tag:blogger.com,1999:blog-46745567482294584722024-03-12T21:08:36.504-06:00Tales from two TEDDY momsTEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-4674556748229458472.post-28557286707666525542023-03-02T14:34:00.004-07:002023-03-03T14:09:52.724-07:008th Grade Capstone Project - Data Newsletter<p><br /></p><p></p><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsIBcj6Q-f8P7ml72Hz2wJ6e32X64TGvVdGaUtHooumPUnWBIlpRFRxp8mMeNUnAaQ2VwV7QXltEpP_t7atYz6Cam2ikF_a2xfhzs0I3NRKwpUFaOcoF4nUZxTxBjxpjPDtmBvDwRcZ4MAFxXRIyK1mOBzKjEkJZ8-C0mP8BtgEVf4hQCiZ8ms1WQ7/s625/2C51C75D-EBB5-422D-AB26-BA0B2B201A02_Original.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="625" data-original-width="419" height="124" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsIBcj6Q-f8P7ml72Hz2wJ6e32X64TGvVdGaUtHooumPUnWBIlpRFRxp8mMeNUnAaQ2VwV7QXltEpP_t7atYz6Cam2ikF_a2xfhzs0I3NRKwpUFaOcoF4nUZxTxBjxpjPDtmBvDwRcZ4MAFxXRIyK1mOBzKjEkJZ8-C0mP8BtgEVf4hQCiZ8ms1WQ7/w83-h124/2C51C75D-EBB5-422D-AB26-BA0B2B201A02_Original.jpg" width="83" /></a><span style="text-align: left;">TEDDY participant Marissa created a TEDDY Newsletter for her 8th grade Capstone Project in spring 2022. We have included it with our emailed 2023 TEDDY News it is also viewable below. Marissa chose to learn more about TEDDY data and interviewed Dr. Kendra Vehik one of our TEDDY researchers who analyzes data and writes publications. Please check it out! If you are interested in TEDDY being a focus of your school project, please let us know!<br /><a href="https://medschool.cuanschutz.edu/docs/librariesprovider48/clinical-epidemiology/teddy_8thcapston_news.pdf?sfvrsn=e08252bb_2">PDF link for Marissa's TEDDY Data newsletter</a></span></div><p></p><div><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi3BhM8zu2LPgZtsaWa8f8Aq2mW3P27DTXqhCVjZRQCGVxQrVDwnW-Ot2drDH74KG7K-aI19MlVx5TofKGQCBbHdfb8zs5sj-5IjlDqLNwVReNNfqe1LgeoEbnIGhDi6wRUl44iaNwYxdpaDtR-MaKXNxhFwdhrwRruH3DSnuQ7_RezNpuexkep-Hbk" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="898" data-original-width="700" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEi3BhM8zu2LPgZtsaWa8f8Aq2mW3P27DTXqhCVjZRQCGVxQrVDwnW-Ot2drDH74KG7K-aI19MlVx5TofKGQCBbHdfb8zs5sj-5IjlDqLNwVReNNfqe1LgeoEbnIGhDi6wRUl44iaNwYxdpaDtR-MaKXNxhFwdhrwRruH3DSnuQ7_RezNpuexkep-Hbk=w499-h640" width="499" /></a></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgfd7XvdV_AQcpK44PbbIbhSqRpV40k6fcb_VeDJbSWcuKxE-PpcdjwVNdIHhnqDP2TyMzUi13_Xwg_5U00NAaWSplThlkukNeFaimtDuS6h1j-q6EPn3-eHPDJOIuaUw-S28phTeZjUuwN39UvqwL0I7n8ARh-EcvYkOvXlmC-ebeah7bBkyYxfKWp" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="900" data-original-width="696" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEgfd7XvdV_AQcpK44PbbIbhSqRpV40k6fcb_VeDJbSWcuKxE-PpcdjwVNdIHhnqDP2TyMzUi13_Xwg_5U00NAaWSplThlkukNeFaimtDuS6h1j-q6EPn3-eHPDJOIuaUw-S28phTeZjUuwN39UvqwL0I7n8ARh-EcvYkOvXlmC-ebeah7bBkyYxfKWp=w496-h640" width="496" /></a></div><br /><br /></div><br /><br /></div>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-56861455009193409042023-03-02T14:21:00.000-07:002023-03-02T14:21:10.906-07:00Colorado’s TEDDY Study Manager Retires!<p></p><div class="separator" style="clear: both; text-align: left;"></div><p></p><div class="separator" style="clear: both;">Below is a letter from Judy Baxter, our TEDDY Colorado Study Manager 2004 — 2022. Judy is a one-of-a-kind person who helped many TEDDY staff members grow in their professional lives over so many years. We are all stronger with her wisdom and guidance! We will miss her leadership but she has taught us well and we will finish the study strong. </div><div><br /></div><div>———————</div><p>It was about this time in 2004, when I joined the TEDDY Colorado study team that was just forming. Dr. Rewers, who I had worked with on two other big studies, had told me about this incredibly important collaborative study that he, together with others from around the world, were starting with funding from NIH. It was a pivotal time in my career and life. When Dr. Rewers asked me to step in and step up, I only hoped I could make a difference for TEDDY as he had made in offering me the job. Creating, implementing and helping oversee the TEDDY protocol for 19 years with an incredible team has made the second half of my career a joy, giving me a sense of accomplishment, community and yes, family. Moreover, you, the TEDDY kids and families, who have been on this journey, are the heart of this family and the mission of discovery that is TEDDY. Though I have met very few of the 1375 families that enrolled in TEDDY Colorado, I know well of your efforts on our behalf. I am so grateful to all of you, for the patience given, stamina in completing protocols, feedback to make us better, and dedication to making a difference in ways you may never see. Working with this incredible TEDDY family of staff, investigators and participants has been an enormous privilege and the adventure of a lifetime. From my heart, I thank you all. Warmest Regards—Judy Baxter </p><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhJFcpD__rUHQSy1DjQoG3KwcpA6ZczWRFeoAMOWIwFuToW82yXbdgBnOMepEzdusFKNqRYYvYsrt8gOlNFtc-G8KuT11XRKt9_RbZLXdLv57Hs4dTflritaC70pMNMoZ2_e_bo23XtnUrTAspPhZLcjLfM3KUkjfZdTV8xmJtQKb_xxU9_wOW7Y5t6" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="219" data-original-width="154" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhJFcpD__rUHQSy1DjQoG3KwcpA6ZczWRFeoAMOWIwFuToW82yXbdgBnOMepEzdusFKNqRYYvYsrt8gOlNFtc-G8KuT11XRKt9_RbZLXdLv57Hs4dTflritaC70pMNMoZ2_e_bo23XtnUrTAspPhZLcjLfM3KUkjfZdTV8xmJtQKb_xxU9_wOW7Y5t6" width="169" /></a></div><br /><br /></div>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-82893636974727991362022-01-26T13:28:00.008-07:002022-01-26T13:28:51.561-07:00Interview with a TEDDY participant<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnox6lvB-sqeEnBPc5CDtFjaTLTA7serG3zqvNtbmbWaZmnfpP0y3-SmH0mJdP1yxozmIvcOB_6jxfBRLVa5NVISY36SSIeqlU5HzXUWD3zdoxahIp9oWQzS5pSsjm_xpZv40fxeHBAwY/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" data-original-height="129" data-original-width="129" height="121" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnox6lvB-sqeEnBPc5CDtFjaTLTA7serG3zqvNtbmbWaZmnfpP0y3-SmH0mJdP1yxozmIvcOB_6jxfBRLVa5NVISY36SSIeqlU5HzXUWD3zdoxahIp9oWQzS5pSsjm_xpZv40fxeHBAwY/w121-h121/image.png" width="121" /></a></div><p></p><p class="MsoNormal" style="margin-bottom: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">Interview with Chelsea, 14 years old, a TEDDY participant who is soon to be a TEDDY Graduate<br /><o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What is your earliest memory of the TEDDY study?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">One of my earliest memories was sitting in the chair playing with a fan. I remember being in the room with my dad and playing with the fan to distract me. I remember it not being painful at all, according to my mom I haven’t cried at a TEDDY blood draw, so I feel that has been a great success. I remember the playroom a lot, it would distract me and would take away all of my nerves and chills. I was about 3 or 4 years old. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What was your favorite part of being in TEDDY?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">My family would tell me being in TEDDY would help people and help myself, so I was super excited to be helping others and helping the study. I was also really excited for the prizes at the end of the visit. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What did you find most challenging?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">The most challenging part was thinking about the needle going into my arm and being so nervous before they put the needle in but then it would be relaxing because I couldn’t feel anything. Each time I thought it was going to hurt but it doesn’t. The last few visits I had to come in more frequently, every 3 months instead of every 6 months, and I wasn’t use to feeling that anxiety as often so I was scared. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">If someone asked you, “What is TEDDY?” what would you tell them?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">I would tell them it is research that can help children who are at risk for getting type 1 diabetes, figuring out why people get type 1 diabetes. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What was the most important thing you learned from TEDDY?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">The most important thing was getting to know more about myself, getting to know a part of me that I didn’t know before and learning about type 1 diabetes. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What do you hope TEDDY has learned from your participation?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">I would hope that TEDDY learned new and interesting facts about type 1 diabetes, about the positives and negatives between my tests (blood draws) and how type 1 diabetes progresses. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">How did you feel differently when you learned about your positive autoantibody result?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">When we got results that I had my first positive it was pretty nerve racking. I immediately started freaking out and started over thinking it too much. I was pretty nervous until it was explained in depth about what it was and what it meant. That explanation took a giant weight off my back. <o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; font-weight: bold; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">What would you tell other TEDDY kids about getting a positive test with TEDDY?<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan;"><span lang="en-US" style="color: black; font-family: "Gill Sans MT"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-bidi-language: ar-SA; mso-ligatures: none; mso-style-textfill-fill-alpha: 100%; mso-style-textfill-fill-color: black; mso-style-textfill-type: solid;">I would tell them don’t over think it, it doesn’t mean you are 100% prone to get type 1 diabetes. I thought about it so much and I created so much stress about that one autoantibody that wasn’t necessary. <o:p></o:p></span></p>
<p class="MsoNormal" style="mso-pagination: none;"><span lang="en-US" style="language: en-US; mso-ligatures: none;"> <o:p></o:p></span></p>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-42469850955411137922020-03-19T14:38:00.002-06:002020-03-19T14:39:12.569-06:00 15 Year Visit - Thoughts on the end of TEDDY: Interview with Tricia Gesualdo <div class="p1" style="font-family: Helvetica; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin-top: 3px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX_87chbo7nu6qxNcptEJobWMGzmYVRg-2-vGQ0oFao-o1H_hZkrqxbXIXU6uBSEFdvsC40bnYqcSCmVNn4pkW1eaeIi_-v-A5YTwWarY89fa3RrKZFfJrBLvV8i2vp_L9ERwiIWMN4nU/s1600/Keller.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1249" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX_87chbo7nu6qxNcptEJobWMGzmYVRg-2-vGQ0oFao-o1H_hZkrqxbXIXU6uBSEFdvsC40bnYqcSCmVNn4pkW1eaeIi_-v-A5YTwWarY89fa3RrKZFfJrBLvV8i2vp_L9ERwiIWMN4nU/s320/Keller.jpg" width="249" /></a><span style="font-size: 10px;"><b><i>All participants finish the TEDDY research study with their finial visit at age 15. </i></b></span></div>
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<b style="font-size: 10px;"><i>What considerations go into ending a study? <span class="Apple-converted-space"> </span></i></b></div>
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I think of ending a study from 3 different perspectives: you have the TEDDY child, the parent(s) and the study clinician. We are not only ending a protocol, but really, while it’s not intentional, we are actually ending a life-long relationship and that’s definitely a tear-jerker.</div>
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Emotions aside, there is a careful attention to detail that goes into ending a protocol.<span class="Apple-converted-space"> </span>“Oh no, what if we miss something?” or “What if we don’t get to ask _____?”.<span class="Apple-converted-space"> </span>We have actually strategized how to prevent this and put into place a lot of quality assurance checks with the data long before the 15 year visit.<span class="Apple-converted-space"> </span>We are confident we have done our best.</div>
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<b><i>How should a family prepare ahead of their final visit?</i></b></div>
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Please talk to your TEDDY child and remind them this is their last visit.<span class="Apple-converted-space"> </span>How does that make them feel? <span class="Apple-converted-space"> </span>15 years is a long time! TEDDY has been part of every stage of their lives so far and now it is coming to an end.<span class="Apple-converted-space"> </span>Encourage your kids to ask us questions.<span class="Apple-converted-space"> </span>The TEDDY clinicians will be having these conversations at least a year before the final visit; maybe your discussions beforehand will help identify areas of concern we should address. <span class="Apple-converted-space"> </span></div>
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If you and your TEDDY child have a preference in your clinician, please let us know so we be sure they are available to see you.<span class="Apple-converted-space"> </span>Also, please remember to bring in an up-to-date vaccine record and confirm both parents and all siblings have participated in the Parent/Sibling DNA protocol. <span class="Apple-converted-space"> </span></div>
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Lastly, it would be very helpful for parents and the TEDDY child to complete the End of TEDDY Questionnaire through the TEDDY portal before the visit.<span class="Apple-converted-space"> </span>Your feedback is very important to us; we don’t want you to feel pressed for time when completing the questionnaire at the visit. <span class="Apple-converted-space"> </span></div>
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<b><i>What can a family expect during their final visit?</i></b></div>
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The staff is booking an hour and a half for the 15-year visit.<span class="Apple-converted-space"> </span>It is really important to us to be able to celebrate this huge accomplishment with our families!<span class="Apple-converted-space"> </span>The visit may not take that long, but we don’t want it to be rushed.<span class="Apple-converted-space"> </span>We want to make sure you all have the time you need as well. <span class="Apple-converted-space"> </span></div>
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<b><i>What options are there for families after the final visit?</i></b></div>
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We recognize families are accustomed to having the close monitoring every 3-6 months.<span class="Apple-converted-space"> </span>Families have shared concerns that they are not going to have the TEDDY test results anymore.<span class="Apple-converted-space"> </span>We recommend checking in with us in 6-12 months.<span class="Apple-converted-space"> </span>We can let you know what research study options we have at the Barbara Davis Center for autoantibody testing. <span class="s3" style="color: #6633ff;"><b>303-724-7577 teddy.study@ucdenver.edu<span class="Apple-converted-space"> </span></b></span></div>
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<b><i>Why is it important for the final visit to be at the BDC for those living in the Denver Metro Area?</i></b></div>
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TEDDY clinics at our offsite locations offer a convenient and quick visit for families.<span class="Apple-converted-space"> </span>However, it is not going to be enough time for the final visit.<span class="Apple-converted-space"> </span>Once again, we want to celebrate your child’s accomplishment and we don’t want to be hurried. We recognize that it is a drive - it’s definitely going to take time - but we would just really appreciate that quality time with you and your child. <span class="Apple-converted-space"> </span>We have Saturdays or we could schedule after school. We will do our best to be<span class="Apple-converted-space"> </span>flexible since we are asking you to make the drive to Aurora,</div>
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<b><i>How many subjects have graduated from TEDDY to date?</i></b></div>
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By the time this goes out, there will be over 15 kids completing TEDDY in Colorado!<span class="Apple-converted-space"> </span></div>
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<b><i>How do you, as a clinician, feel about the end of TEDDY and saying goodbye to families?</i></b></div>
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That’s a tough one! OMG! There’s definitely mixed emotions. Professionally, I am <span class="s2" style="text-decoration-line: underline;">SO</span> proud to have been a part something as big as TEDDY...it has truly been an honor to be on this team and contribute to T1D research. Personally, I have treasured this time watching your kids grow up and being part of your TEDDY life.<span class="Apple-converted-space"> </span>It is hard to believe our first contact could have been as early as 2 months of age when I called to share the genetic results and invited your family to be in TEDDY.<span class="Apple-converted-space"> </span>I love to see the expressions of your kid’s face when I remind them that we have know each other since they were 3 months old and they were in diapers!<span class="Apple-converted-space"> </span></div>
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Overall, I feel like we have grown up together. I’m not very fond of goodbyes.<span class="Apple-converted-space"> </span>So I won’t want to think about it quite yet.<span class="Apple-converted-space"> </span>For now, <span class="s2" style="text-decoration-line: underline;"><b>THANK YOU </b></span>for your commitment to T1D research and your dedication to the TEDDY Study. <span class="Apple-converted-space"> </span></div>
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<b><i>Tricia Gesualdo has been a lead clinical nurse coordinator for the Colorado TEDDY study since 2004<span class="Apple-converted-space"> </span></i></b></div>
TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-41906428982460189072019-02-07T13:48:00.000-07:002019-02-07T13:48:00.184-07:00Guest Post A TEDDY Staff member at the Seattle TEDDY Center: Follow-up Q&A <div style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin-top: 6px;">
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<b><i>How do you manage Greta’s diabetes while she is at school? </i></b></div>
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We are lucky to have an elementary school with a full-time nurse, and it’s been the same person the last 4 years. So far, we have intentionally not set up any remote monitoring for me, although we may in the future. Greta independently tests her blood sugar and gives insulin through her pump at lunch time. We pack lunch each day, so she doesn’t have to guess on the amount of insulin she needs. The nurse checks in each afternoon to make sure her numbers are on track.</div>
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<b><i>What is the biggest challenge for you and your family with Greta’s diabetes? </i></b></div>
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Our biggest challenge, at age 10, is finding the right balance of independence and autonomy for Greta, while making sure that she is keeping herself safe and healthy. Sometimes, she wants to be a normal kid, not having to worry about her diabetes. Our job is helping her find the right strategies to manage her diabetes independently so she can participate in opportunities that come along as kids get older.</div>
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<b><i>How do you talk to your son about what Greta has gone through and continues to live with? </i></b></div>
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That’s such a great question. He was 11 months old was Greta was diagnosed, so it’s all he’s ever known. It only dawned on him at age 4 or 5 that not ALL families have someone with diabetes. He sometimes says he wants to have diabetes too. This makes Greta SO MAD. We tell her it’s because he loves her and looks up to her. I think living around her has made him more empathic. And he can tell you A LOT about diabetes.</div>
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<span style="color: black;"><b><i>Does Greta have a role in the management of her care? How has that evolved over the years? </i></b></span></div>
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<a href="https://www.blogger.com/blogger.g?blogID=4674556748229458472" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>She has a huge roll in her care. While we sometimes do it, to share the burden, she can do all her finger pokes and do all her dosing on the pump. We insert her new insulin pump and Continuous Glucose Monitor (CGM) sites. She’s getting close to being able to do it, but logistically being able to reach those parts of the body is tricky. She can read food labels and is getting good at guessing the carb count on more common foods (handfuls of crackers, or a baked good). Her endocrinologist is also good about engaging Greta in her visits. When she was very little, we would do her shots. She started entering the amount of carbs eaten on her pump by age 5 or 6, but with a grownup checking her before hitting ‘go.’ And it slowly evolved over the years.</div>
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<span style="text-indent: 36px;"><b><i>What advice would you give to families in introducing ownership of this disease to their children? </i></b></span></div>
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<span style="text-indent: 36px;">Diabetes is a marathon, not a sprint. Additionally, it's not a one-way road. There will be times that kids 'grow' in taking control of their management, and then want or need their grown-ups to take more of a lead again, and then later they want to take on more again. It's not a steady progression of steps towards independence. Sometimes they will need you to step back up and help. And that's okay. I am also (because of my background) a strong proponent of making sure kids understand what diabetes is. An auto-immune process has stopped your pancreas from working. It is not your fault. It is not your parents' fault. And, it is really hard to mimic an entire organ! And "dia-buddies" - friends their age who also have diabetes, are really important! Finding that social network for them is important.</span></div>
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<span style="font-family: "arial";"><b><i>What technologies or tools have you and your family found to be the most useful in managing Greta’s care? </i></b></span></div>
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<span style="font-family: "arial";">We are currently on Medtronic's integrated CGM/pump, and it's been a great system for us. It's hard for me to pick just one tool. The continuous glucose monitor has allowed us to understand and respond best to what Greta's blood sugar numbers are doing. But the insulin pump allows Greta to eat more naturally (snacks, not having to commit to eating her entire plate), and, especially when she was young, made it much easier for others to care for her. </span></div>
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TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-10389364815126601422018-05-15T16:07:00.000-06:002018-05-15T16:42:29.480-06:00Guest Post — A TEDDY Staff member at the Seattle TEDDY Center <br />
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<span lang="en-US" style="color: black; font-family: "gill sans mt"; font-size: 10pt;"><span style="font-size: small;">I fell into diabetes research completely by accident. But I ended up loving my job and my co-workers, and it was a great place to be while I navigated the steps of young adulthood – getting married, buying a house, and starting a family. My daughter was born in 2008, and my son in 2012. My daughter was screened for TEDDY, but didn’t have the high risk markers so she was not eligible to participate in the follow-up part of the TEDDY Study.</span> <o:p></o:p></span></div>
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<span lang="en-US" style="color: black; font-family: "gill sans mt"; font-size: 10pt;"><span style="font-size: small;">A big part of my job as a TEDDY Study Clinical Coordinator is educating families about the signs and symptoms of type 1 diabetes. So when my almost-5 year old daughter was suddenly peeing like crazy, drinking like crazy, and super cranky, I thought I was imagining things (like the way they say med students end up thinking they have each condition as they learn about it). But over the course of a weekend, I couldn’t stop thinking about it, so on Monday, I brought a glucometer home from work. When I checked her blood sugar that night, she was 400. Diabetes.</span> <o:p></o:p></span></div>
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<span lang="en-US" style="color: black; font-family: "gill sans mt"; font-size: 10pt;"><span style="font-size: small;">We hopped in the car, and went down to Seattle Children’s Hospital. We caught it very early, and she was relatively healthy at diagnosis. We completed our diabetes education over the next few days. Having the background of working at the TEDDY Study for 8 years was such a blessing. To understand the auto-immune processes at play, and to know that environmental triggers are yet to be found removed much of the shock and guilt that seems to sometimes accompany a type 1 diabetes diagnosis. We hit the ground running. <o:p></o:p></span></span></div>
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<span lang="en-US" style="color: black; font-family: "gill sans mt"; font-size: 10pt;"><span style="font-size: small;">Today, Greta is a healthy, happy 9 ½ year old. She manages her diabetes with a pump and continuous glucose monitor. Diabetes is exhausting. The constancy of needing to manage it, day in and day out, is draining. But I have faith that technologies will get better and better, making management easier and easier. In the mean time, we live by one of our favorite expressions from Type 1 Diabetes Camp: “Type 1 may be along for the ride, but it DOESN’T get to drive!”<o:p></o:p></span></span></div>
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<span lang="en-US" style="color: black; font-family: "gill sans mt"; font-style: italic;"><span style="font-size: small;">Follow-up Q&A coming in the next issue. Do you have a question you’d like to ask this mom? Please email rachel.karban@ucdenver.edu<o:p></o:p></span></span></div>
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TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-5394019724589872362018-05-15T14:51:00.000-06:002018-05-15T14:51:15.985-06:00Guest Post — A “Rita Visit”<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: inherit;"><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;">For those of you who haven’t met me, my name is Rita Trujillo Hughes.<span style="mso-spacerun: yes;"> </span>I’ve worked with the TEDDY study the past five years after “retiring” from the BDC Pediatric Diabetes Clinic where I was one of the Clinical Social Workers. I have a unique job with TEDDY.<span style="mso-spacerun: yes;"> </span>I meet with kids who have experienced fears or lots of anxiety about getting their blood drawn.<span style="mso-spacerun: yes;"> </span>This is a pretty common and normal fear, but one that can be </span><span lang="en-US" style="font-family: "gill sans mt"; font-weight: bold;">really</span><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;"> </span><span lang="en-US" style="font-family: "gill sans mt"; font-weight: bold;">distressing</span><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;"> to kids (and parents!).<span style="mso-spacerun: yes;"> </span>My job is to figure out the unique worries and experiences that kids have and teach them some pretty effective coping skills or “tools” to help diminish that worry and fear.<span style="mso-spacerun: yes;"> </span>I’ve had tons of experience working with kids and have had the pleasure of meeting lots of very smart and cute kids—teens too!</span></span><br />
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<span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;"><span style="font-family: inherit;">Have you noticed that your child may be more anxious about TEDDY blood draws than they were when they were younger?<span style="mso-spacerun: yes;"> </span>That there’s more whining and resistance to the idea of getting poked?<span style="mso-spacerun: yes;"> </span>Or that they are outright against it?<span style="mso-spacerun: yes;"> </span>If so, this is not unusual as kids get older and their brains start to anticipate and worry about needles and pokes. </span></span></div>
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<span style="font-family: inherit;"><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;">Our brains are “hard wired” to protect us from perceived threats.<span style="mso-spacerun: yes;"> </span>It’s designed to send signals to release stress hormones (fight or flight) that help us manage an </span><span lang="en-US" style="font-family: "gill sans mt"; font-style: italic;">emergency</span><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;">. But blood draws aren’t an emergency and there are some simple things that we can do to help master the worry that can develop around blood draws.<span style="mso-spacerun: yes;"> </span>Think of these as learning simple coping skills that can be useful in any situation that makes us anxious.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span lang="en-US" style="font-family: "gill sans mt"; font-weight: bold;">Parents:<span style="mso-spacerun: yes;"> </span></span><span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;">Do blood draws make you anxious? Almost everyone has some anxiety, and most of us develop our own coping skills to manage. But if you have a lot of anxiety, kids pick up on that and it will be hard to comfort them.<span style="mso-spacerun: yes;"> </span>Learning some skills might help you.<span style="mso-spacerun: yes;"> </span>Or you may need to have someone who is more comfortable help out.</span></span></div>
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<span lang="en-US" style="font-family: "gill sans mt"; language: en-US; mso-ansi-language: en-US; mso-armenian-font-family: Calibri; mso-currency-font-family: Calibri; mso-cyrillic-font-family: Calibri; mso-greek-font-family: Calibri; mso-hebrew-font-family: Calibri; mso-ligatures: none;"><span style="font-family: inherit;">
<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>Prepare at
home:</strong><span style="mso-spacerun: yes;"> </span>Ask your child about how they are
feeling and what they understand about TEDDY.<span style="mso-spacerun: yes;">
</span>Most kids worry about <i style="mso-bidi-font-style: normal;">shots</i>,
which can be uncomfortable. TEDDY tries hard to minimize any discomfort with <i style="mso-bidi-font-style: normal;">blood draws</i> by using EMLA to numb the
area.<span style="mso-spacerun: yes;"> </span>To minimize worry, be
matter-of-fact (“small quick little ouch and done!”).<span style="mso-spacerun: yes;"> </span>Ask your child what they think would help
keep them calm.<span style="mso-spacerun: yes;"> </span>Sometimes an old stuffed
animal has to be recommissioned for comfort duty!<o:p></o:p></span></span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>Minimize
other stressors:</strong><span style="mso-spacerun: yes;"> </span>Leave other kids at
home with a sitter; avoid rush hour traffic; videos and music in the car are
good distraction; a good old fashioned chat about other fun stuff works too.<o:p></o:p></span></span></div>
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<u><span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">And teach
some simple coping skills.<span style="mso-spacerun: yes;"> </span>These are
designed to prevent stress from becoming overwhelming:</span></u></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>BREATHE:</strong><span style="mso-spacerun: yes;"> </span>Slow deep calming breaths (“blow out the
scared feelings”) helps enormously to calm stress and fear.<o:p></o:p></span></span></div>
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<!--[endif]--><span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>Learn about
how our Brain works:</strong><span style="mso-spacerun: yes;"> </span>I have lots of
ideas to keep our “thinking” brain in charge and not let our “fear” brain take
over.<span style="mso-spacerun: yes;"> </span>We call it using our Wizard Brain
to calm our Lizard Brain. <o:p></o:p></span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>EYEBALL
Distraction:</strong><span style="mso-spacerun: yes;"> </span>Don’t look at the
poke.<span style="mso-spacerun: yes;"> </span>Make your eyeballs do something
else: <span style="mso-spacerun: yes;"> </span>focus on a video or game on an
iPad or phone; read out loud from a favorite book; sip water through a straw or
suck on a lollipop; listen to music with headphones; talk to your mom about
something funny about your friend; comes armed with some new jokes!<o:p></o:p></span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>Avoid the
stalling:</strong><span style="mso-spacerun: yes;"> </span>When kids get anxious, they
become masters at stalling and avoiding.<span style="mso-spacerun: yes;">
</span>Unfortunately this also increases anticipation and cranks up the anxiety.
So be calm and firm that we need to get it done quickly and move on.<o:p></o:p></span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><strong>Special
treat or reward:</strong><span style="mso-spacerun: yes;"> </span>Always a good incentive
to look forward to.<span style="mso-spacerun: yes;"> </span>Some kids like a
food treat or a trip to spend some TEDDY money for their hard work as Jr.
Scientists.</span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-family: inherit;">Ideally, kids should not be
restrained during blood draws because that increases their sense of fear and
loss of control.<span style="mso-spacerun: yes;"> </span>Better that they have
some control and are assured that using breathing and distraction really works!<span style="mso-spacerun: yes;"> </span>Most of the time, techniques like the above
help a great deal.<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: "calibri" , sans-serif; mso-ansi-language: EN-US; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "MS Mincho"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: major-latin;">If
your child really gets overwhelmed with blood draws, talk with your TEDDY staff
to see if we can schedule a “Rita visit”.<span style="mso-spacerun: yes;">
</span>I love meeting new kids and figuring out what we can do to make TEDDY
visits and blood draws much <u>much</u> easier.<span style="mso-spacerun: yes;">
</span>Parents have told me that some of the skills their kids learn are
helpful in other stressful situations too.</span><o:p></o:p></span></div>
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</span>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-18689171385126482372016-07-20T14:18:00.000-06:002016-07-20T14:18:07.672-06:007.5 Year TEDDY Visit
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl4zLIxWLIMe5Up_olnVVY1Z60TQXEc86KAgcqarE-TPnSBNdG1Svov0sVij48NN0Wveov8syKzj2qRsc25ribgizg6pYj8KW8lYdhiRd6TdL56N9VjbMyeEkwgX_FjvlSjaDcPN37-cY/s1600/IMG_7945.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl4zLIxWLIMe5Up_olnVVY1Z60TQXEc86KAgcqarE-TPnSBNdG1Svov0sVij48NN0Wveov8syKzj2qRsc25ribgizg6pYj8KW8lYdhiRd6TdL56N9VjbMyeEkwgX_FjvlSjaDcPN37-cY/s320/IMG_7945.JPG" width="240" /></a>We recently completed my son’s 7 ½ year visit. My son is
happy to go to TEDDY each time because he likes playing on the Kindle Fire,
getting a prize, and receiving the TEDDY money. I also think he likes coming to
my work, seeing my office, and meeting with Kim. When I asked him to draw
something about TEDDY he remembered the new slime with bugs from his most
recent visit. He asked to have his visit early because he was saving up for his
first large purchase and some of the TEDDY money helped him reach the full
amount. He saved money from two TEDDY visits, worked extra chores, and helped
on several house pr<img height="16" id="w9nuqx7vh3z5" src="data:image/gif;base64,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" width="16" />ojects to earn enough money for a new Star Wars Lego. He and
I both have a special connection with TEDDY so I was happy the TEDDY money
helped him buy the Lego set he later built with my brother. </div>
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Though the prizes are fun and the money is awesome, my son
at 7 still does not quite understand why he participates in TEDDY. I have tried
explaining diabetes to him and his risk, using tools like the Junior Scientist
book, but I believe this is a difficult concept to understand for a child of
his age who does not know anyone with type 1 diabetes. I hope to continue the
conversation using the books and videos TEDDY has developed so when he’s older
he can understand why he is in TEDDY and how he and other children are helping
scientists discover the causes of type 1 diabetes. </div>
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<span style="font-size: x-small;">We are lucky that his blood draws have gone very well. A
year and a half ago my son had a reaction to the numbing cream so now they only
uses the cooling spray that numbs the skin for a few seconds. My husband and I
wish it was this easy when he has to get shots!</span></div>
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TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-57208742943544194082016-04-12T12:11:00.000-06:002016-04-12T12:11:19.407-06:00Bye Laraine!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBl5LNiYETPLpz-a7PHxRiM1xyUC7zmFO4RDiwZm2q1yaHsJhgOTmCRVRGZky-vgYS_4i7Caad-zvrQoXbB_6SxfSDqXt-TZ-oHxop5DNcGxHk4jHdqA0dv6N5yKfSnEywLLtjG5BWIrQ/s1600/IMG_5421.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBl5LNiYETPLpz-a7PHxRiM1xyUC7zmFO4RDiwZm2q1yaHsJhgOTmCRVRGZky-vgYS_4i7Caad-zvrQoXbB_6SxfSDqXt-TZ-oHxop5DNcGxHk4jHdqA0dv6N5yKfSnEywLLtjG5BWIrQ/s320/IMG_5421.JPG" width="240" /></a>Hello! My name is Laraine and I have been working as a TEDDY clinician since the fall of 2010. In June I will be leaving the study to pursue a master’s degree in education. The program will prepare me to teach Special Education in Denver Public Schools. My last five years of interacting with TEDDY participants and families has led me to become a teacher. Working with the children and families has shown me that I truly have an aptitude for connecting with children and have developed a desire to teach children in a classroom setting. In this blog I want to say goodbye by giving a big shout out to our TEDDY staff and of course to our families.<br />
<br />The TEDDY staff has been a huge part of my life the last five years. I have grown both as an individual and as a professional because of the support of our team. I value their friendships and appreciate their support of my decision to become a teacher. I will miss them! I will miss the energy the TEDDY kids bring to the clinic, the funny things the kids say, and watching them grow up. I have learned a lot about dedication by watching the TEDDY families throughout the years. I admire families’ commitment to TEDDY and finding the causes of type 1 diabetes. My experiences have helped me to pursue new dreams thanks to the support and encouragement I’ve received here at TEDDY. Now, onward to the next step in my journey. I will be sure to bring my professionalism, dedication, and determination to help others, to a new place of work where I can explore special needs and help children reach their full potential. Thank you TEDDY for all you’ve done and for all you’ve been for me and for the research community. Farewell!TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-53822245591027131562015-09-10T13:57:00.000-06:002015-09-10T13:57:08.963-06:00Science Day<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JfN8nkoFcNzi3jl6X_JI3aRxOz3iI-LcJZn3cprguUnr75hKQHpfcvrmIX8SPC8-B3MIPSFKfWiAxooQ_aARVzyc3Goe8xqpjPUpvDSwV9jOi7TImPueYDBI908uVNnTRklFDyuB62E/s1600/IMG_5983.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JfN8nkoFcNzi3jl6X_JI3aRxOz3iI-LcJZn3cprguUnr75hKQHpfcvrmIX8SPC8-B3MIPSFKfWiAxooQ_aARVzyc3Goe8xqpjPUpvDSwV9jOi7TImPueYDBI908uVNnTRklFDyuB62E/s200/IMG_5983.JPG" width="200" /></a></div>
TEDDY Science Day was a blast for my son and daughter this spring. They both loved participating in the experiments. The bouncy ball station was a big hit followed by the candy blood components station. Our bouncy ball actually lasted a few days even though it flattened out and had to be reshaped several times. My favorite was the strawberry DNA followed by the lava lamps.<br />
<br />In addition to the experiments my son enjoyed helping me at the Science Day. I brought him early to help setup. He was eager to assist and watch all the TEDDY staff getting ready. He also volunteered to stay late with me as opposed to leaving with his sister and dad so he could help with the cleanup. Since he was about 4 he has been very interested in what I do at the TEDDY events even if it was just putting food out. It was so enjoyable to be able to go through the experiments with my son and daughter and watch the other TEDDY children have a good time.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0bYNqHyaSdjhNK8Q_x6kBp1dqQdYc2590PcuhjxnqJh2g6gCzLDNoM4JvVGW3vEvVh1_xFvoQflzd3Ywi8CnocNRhxo9CQqceNTQVVeqfZKbS16LsJH78ccy7GZj2A0bfbFWeQOSd6RM/s1600/IMG_5920.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0bYNqHyaSdjhNK8Q_x6kBp1dqQdYc2590PcuhjxnqJh2g6gCzLDNoM4JvVGW3vEvVh1_xFvoQflzd3Ywi8CnocNRhxo9CQqceNTQVVeqfZKbS16LsJH78ccy7GZj2A0bfbFWeQOSd6RM/s320/IMG_5920.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXgYGt91j72x5I8Qw-KhhuKuQgOAK91kOTVk1yerEARwyvEChlI3j7YfIPPmdGaKlcmPV6xZDirW1rRQSwIzDskGiQyiRNmysnJ0qx6NaaLXi9Gg4ZPb1nkOCegzo9OzZ_OtEDnxcX0v8/s1600/LavaLamp3.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXgYGt91j72x5I8Qw-KhhuKuQgOAK91kOTVk1yerEARwyvEChlI3j7YfIPPmdGaKlcmPV6xZDirW1rRQSwIzDskGiQyiRNmysnJ0qx6NaaLXi9Gg4ZPb1nkOCegzo9OzZ_OtEDnxcX0v8/s200/LavaLamp3.JPG" width="200" /></a>A lot of planning went into the TEDDY Science Day and it was fun to see all the TEDDY staff get so involved. Almost everyone was on an experiment team. Teams were first assigned an experiment but then had to figure out all the materials that would be needed, cost for the budget, write instructions, and create posters. The creativity was awesome! Some of the posters will be displayed in the clinic rooms and hallway starting this fall. We hope this will be an event we will run once a year as TEDDY is always trying new ways to keep you and your child engaged in our study. If you attended we hope you had a great time, if you could not attend we hope to see you next year!TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-25110935316827837012015-03-26T15:19:00.000-06:002015-03-26T16:50:39.216-06:00My son’s “job” with TEDDYMy son has enjoyed many parts of participating in TEDDY over the years. We have been lucky because blood draws have been easy for him. He is someone who thrives on being the center of attention, feeling special, and TEDDY visits are all about him. He loves playing with the toys, using the Kindle Fire during the visits, and picking out prizes. This past visit was even more exciting <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikb4CBdhpJrBAy3v2IJSSADY1UQl1dUzKZQhkz1z4aoslxNj1CFeLbj0CEivVCD79Xua4IqJLmjxCI90jllbasBzloRTEECz4zoGCVmkUogc3j6Zsf_IJc2LqCjSrNliU1AA9tpf5k-tQ/s1600/IMG_4839.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikb4CBdhpJrBAy3v2IJSSADY1UQl1dUzKZQhkz1z4aoslxNj1CFeLbj0CEivVCD79Xua4IqJLmjxCI90jllbasBzloRTEECz4zoGCVmkUogc3j6Zsf_IJc2LqCjSrNliU1AA9tpf5k-tQ/s1600/IMG_4839.JPG" height="150" width="200" /></a></div>
because one week before his appointment he spent an evening with me in the Wal-Mart toy section picking out new toys for the playroom and clinic rooms. He asked every day that week if the next morning was his TEDDY visit because he wanted to play with the Transformers he picked out for the clinic. <br />
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A benefit of participating in TEDDY is he/we are paid for participation for visits, stool samples, and completing diet records. Thus far my son has not been actively involved in the payment from TEDDY. We set up a bank account for him when he was 6 months old and put all his TEDDY checks in that account. Over the years he has received over $1,000! We were able to use $500 of that money to start a college 529 savings plan last year. Now that TEDDY will be switching to paying in cash for in-person visits, my husband and I are excited for this opportunity to teach him about his “job” with TEDDY. Participation in research is key to learning more about the science of a problem or disease, but it takes time and effort on the part of those who participate in the study. Many research studies pay subjects for their effort, just like TEDDY. My son is old enough to understand money and has a goal to save up for another Transformer. He does extra chores to earn money for his Transformers, but at his next TEDDY visit we are excited to teach our son how his job with TEDDY pays him cash. We will help him divide the money to purchase the Transformer, deposit some in his savings account, and add some to his Christmas gift wallet. We know that not only will this be a good learning experience, but he will be even more excited to go to his next TEDDY visit.<br />
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TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-12491337054902207902014-07-30T14:48:00.000-06:002014-07-30T14:50:32.333-06:00I worry about my son's TEDDY results<div class="MsoNormal" style="margin-bottom: 0pt; margin-top: 4.0pt; mso-pagination: widow-orphan; text-align: justify; text-align: justify; text-justify: newspaper; text-justify: newspaper;">
<span lang="en-US" style="font-family: Arial, Helvetica, sans-serif;">Since finding out my son’s increased risk for developing diabetes, there has always been the thought and worry that he may one day get the disease. Even now we are waiting on his most resent antibody results. I always hold my breath as I’m finding out his results. Will they still be negative? <o:p></o:p></span></div>
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<span lang="en-US" style="font-family: Arial, Helvetica, sans-serif;">I've thought maybe my increased anxiety stems from working in this field, surrounded every day by type 1 diabetes research and knowing that some children his age have antibodies or even diabetes. But knowing me, I’d still have some anxiety even if I didn't work for TEDDY. Are other families like me? Do they wait for that letter in the mail hoping that everything is still negative? <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span lang="en-US">Plenty of adults have the high risk genes and never develop diabetes. I’m one of them, I found out years ago through participation as a control in an adult type 1 research study. I was very surprised that I have those genes and now I look at my childhood a little differently. I think how different my life could have been and how lucky I am that I didn't develop diabetes. </span><span lang="en-US" style="color: red;"> </span></span><span lang="en-US"><span style="font-family: Arial, Helvetica, sans-serif;">One day I hope a research study will be able to tell everyone what triggers type 1 and what people should avoid or do to prevent getting diabetes. This information may not be able to help our sons and daughters, but I’m holding out hope for their children. </span><span style="font-family: Gill Sans MT; font-size: 9.5pt;"><o:p></o:p></span></span></div>
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TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-57415491765903395332014-05-01T16:15:00.001-06:002014-05-01T16:16:42.277-06:00Guest post: My daughter’s diagnosis of type 1 through TEDDY<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKzsIMOL1SS-Bj8d8qUErSRwIC7yGHNDfaUbqvdpVLIvxCFY6My-ySmPVxSyJ4dwt3ti4RQHMnnbJBLm-QBVyzaybpevukcozMOIxb19NzPQ2diSN8MLzCZH1v88NhmqgkSa7rgqAtxZ0/s1600/IMG_7331.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKzsIMOL1SS-Bj8d8qUErSRwIC7yGHNDfaUbqvdpVLIvxCFY6My-ySmPVxSyJ4dwt3ti4RQHMnnbJBLm-QBVyzaybpevukcozMOIxb19NzPQ2diSN8MLzCZH1v88NhmqgkSa7rgqAtxZ0/s1600/IMG_7331.JPG" height="240" width="320" /></a></div>
Just like all TEDDY
kiddos, we were approached at the hospital right after Kyli was born. With my
mom being a type 1 diabetic, I figured this was God knocking on our door
telling us to do the study. About 2 months later, we received "the
envelope." In college, this is a
great thing, but from a study, it meant they wanted Kyli in the study. From
this point forward, I knew Kyli was going to develop diabetes...<br />
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At 33 months, Kyli
was diagnosed with Diabetes in our TEDDY facility. <o:p></o:p></div>
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Her 33 month visit
went like any other visit. Ask all the questions, take some blood, nose swipe.
We started discussing a few things she would be able to do once she turned 3
years old. I thought this appointment
was going to be a piece of cake. Kyli did wonderfully, no fighting the blood
draw. We were going to be in and
out. I look back and I still think, I
should never have been so comfortable. I knew something was up the moment Nurse
Ruth (our favorite nurse) came into the playroom and told us Kyli's A1C was
next in line and we would have to wait a few more minutes. I thought it was
odd, but dismissed it. A few minutes later when she asked us to come back to
our room, I got scared. I grabbed Kyli
and held her tight as they then told me her A1C was elevated to 7.4, not bad
for a diabetic, but bad for a healthy child. As I wept silent tears, I listened
as our life began a huge change. They
brought up an endocrinologist from the downstairs Barbara Davis Center clinic
to talk with me and what all this meant. I was asked to watch her sugars
closely for the next few days, let her eat what she wants and test her 2 hours
later, and if she was high, to call them.
<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 0in; margin-right: 0in; margin-top: 4.0pt;">
I packed up Kyli after nurses made sure
I was able to safely drive and I drove straight to my Mom's work, which was
thankfully on the way home. I cried and we went to lunch at Jack in the Box.
Kyli ate a handful of fries, about half of a cheeseburger, and drank some milk.
I went home and waited the longest 2 hours of my life. I did everything to make
that time go faster. The two hour mark
finally came through, she was napping… I went in tested her sugars, 440. I then went to my room and cried, my 2 year
old daughter was now diabetic. I called
the doctor then and asked, "What is too high?" He said 250.<o:p></o:p></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmutB_rzN9XLwL0HrGx2l6QZrhJ0ibkibgpPP-8gXhKThZo7RXuoe1jNO2AWLmZ0VcG8cfCDL-mmDfSCLXiFSvZG2-fErfkwR2wAbtfc6iwyyxzXsvh5Dk5tjjyCiGL3n9q9f1IlXFA4w/s1600/IMG_7814.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmutB_rzN9XLwL0HrGx2l6QZrhJ0ibkibgpPP-8gXhKThZo7RXuoe1jNO2AWLmZ0VcG8cfCDL-mmDfSCLXiFSvZG2-fErfkwR2wAbtfc6iwyyxzXsvh5Dk5tjjyCiGL3n9q9f1IlXFA4w/s1600/IMG_7814.JPG" height="240" width="320" /></a>We then made an appointment for
us to come in the next day, Saturday, to do a quick injection overview to get
us started. Kyli was diagnosed September 21, 2012. <o:p></o:p></div>
<div class="MsoNormal">
This last year has been a blur. We have adjusted to her
having diabetes. Her early diagnosis was a blessing, we are still in our
Honeymoon Phase, which means that her pancreas still works some. She requires
very small doses of insulin, but nonetheless gets 4-8 shots a day depending on
what she eats and when. We have become carb counting machines. We were able to get a Dexcom G4 Continous
Glucose Monitor in June, it is my new best friend. Kyli will be getting her insulin pump in
October, it will be a blessing. <o:p></o:p></div>
<div class="MsoNormal">
Kyli has adjusted to all the changes very well. A month
after her diagnosis, we did our first Diabetes walk with the ADA. We are doing
that walk again this year in November. Go Team Tiny! <o:p></o:p></div>
<div class="MsoNormal">
What we missed before her diagnosis. It was the end of
summer in Colorado, it is still hot then. All of Kyli's symptoms were accounted
for. Kyli slept a lot, 10-12 hours a night and usually a 4hour nap- she was
going through a growth spurt. Kyli was peeing more, we were potty training.
Kyli was drinking more, it was during a super hot spell in Colorado and she
played outside every day. She never lost weight. Now, when I look back, I
remember thinking her sleeping so much was odd, but I dismissed it. We were
lucky, if a few more weeks had gone by, Kyli could have gone DKA and we could
have ended up in the hospital and Kyli is a coma. Thankfully, TEDDY was there and in my eyes
TEDDY saved Kyli's life. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnOMpvNhyphenhyphenMpp178RbWCuqKbrUtSiGPw21sU9NVha9w6QYgztS8dVBvQLvADxOXifqM6y8fMaS7avW5oSv7a3KlmKhLNUk3a-djWXmrQHRqKQqi0mC92LhbazGizXXM828pYWOACBd6TCQ/s1600/IMG_7427.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnOMpvNhyphenhyphenMpp178RbWCuqKbrUtSiGPw21sU9NVha9w6QYgztS8dVBvQLvADxOXifqM6y8fMaS7avW5oSv7a3KlmKhLNUk3a-djWXmrQHRqKQqi0mC92LhbazGizXXM828pYWOACBd6TCQ/s1600/IMG_7427.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyli with her family in 2013</td></tr>
</tbody></table>
<div class="MsoNormal">
<o:p> <i>We will be doing a follow-up blog post with questions and answers for Kyli's parents. If you have questions you'd like us to ask please email teddy.study@ucdenver.edu include a note referring to this blog and your question.</i></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-80085321943485078982013-08-15T16:45:00.002-06:002014-07-30T14:51:03.634-06:00TEDDY Fun with the Big Bad Wolf<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSRv30z2bKUDgpqnHs4tEBbL2OulYZAqKWl0xKNk7laZgTlOq5fFLR9z4A7_Yu7TnK0pelWPNDZC0DKuKxsCly9OWHQ6dC29wEIf4fySN2CJN7-vSi51C3hjNEZ2MACzW_GcRc9Iu9P0/s1600/2011+156.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSRv30z2bKUDgpqnHs4tEBbL2OulYZAqKWl0xKNk7laZgTlOq5fFLR9z4A7_Yu7TnK0pelWPNDZC0DKuKxsCly9OWHQ6dC29wEIf4fySN2CJN7-vSi51C3hjNEZ2MACzW_GcRc9Iu9P0/s320/2011+156.jpg" height="320" width="240" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><span lang="en-US">At our TEDDY site we were lucky that there was a planned event where families could get together for a free evening of fun and meet other TEDDY families. The tradition for 4 years was a light dinner and free evening at the Children’s Museum. I attended all 4 years and my son has attended 3 years, the 1st</span><span lang="en-US"> party was before my son was born. The last Children’s Museum event was one of my favorites as my son was at a great age to really play. Halfway through the evening we found a wolf costume and he was so excited to be the Big Bad Wolf a character he had learned about on Sesame Street and reading books. He ran around the room and climbed up the tree roots yelling to other kids “I’m the Bad Wolf.” I think he was roaring at kids too, I hope he didn’t scare any young ones! He had so much fun and asked for days, “Go to TEDDY Party again mommy?”<o:p></o:p></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<div class="MsoNormal" style="margin-bottom: 0pt; margin-top: 3pt; mso-pagination: widow-orphan;">
<span lang="en-US" style="font-family: Arial, Helvetica, sans-serif;">We look forward to this year’s TEDDY event at the Butterfly Pavilion!</span></div>
TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-75577736037158471232013-04-23T11:17:00.000-06:002013-04-23T11:17:04.759-06:00Why TEDDY is important to us, why is it important to you?
Why do we participate in TEDDY? I may be unusual in that I
really like research studies. I’ve participated in several studies since I
started working in research. Some studies compensated with money for my time
and some did not, I participated just to help out. I also enjoy reading about
health related research findings in the news. I’m interested in many health
outcomes as type 1 diabetes isn’t the only disease my family is at risk of
developing.<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
After I got the phone call that my son has the higher risk
genes, a call I’ve in fact made to parents countless times, I told my husband
the news. He just said “Sign him up, why wouldn’t we?” I also wanted to have my
son participate for many reasons. Some of my reasons are more selfish than
others. I really want to know those antibody results and I’m a little anxious
each time I receive results. I like that we are a tiny piece of an
international research study, that the information we give about our son may
someday be part of finding the cause or prevention for type 1 diabetes. I know
how important every single TEDDY child is and I’m glad that if my child had to
have the high risk genes at least he can be monitored, followed and help this
important research study.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
While <span style="mso-bidi-font-style: italic;">many of the </span>children
born to staff members <span style="mso-bidi-font-style: italic;">were </span>screened
for <span style="mso-bidi-font-style: italic;">the </span>high risk genes since
TEDDY <span style="mso-bidi-font-style: italic;">began </span>in 2004<span style="mso-bidi-font-style: italic;">,</span> there had <span style="mso-bidi-font-style: italic;">not </span>been a child of a TEDDY staff member eligible for the
follow-up at our site until the results came in for my son and then C’sTEDDYMommy
received results at the same time.<span style="color: navy; font-family: "Arial","sans-serif"; font-size: 10pt;"> </span>Privacy was a concern at the very
beginning but now I don’t mind sharing that we participate in the study. We are
proud to be a part of the TEDDY study and I hope someday in the future my son
is proud too.<span style="color: navy; font-family: "Arial","sans-serif"; font-size: 10pt;"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p> </o:p>Why do you participate in TEDDY? I’d love to have other
parents write why they participate or why TEDDY is important to their families.
If you don’t want to write but are still interested in sharing your experience
we can speak on the phone and I’ll write your story in an interview format.
Please email <a href="mailto:teddymomblog@gmail.com"><span style="color: blue;">teddymomblog@gmail.com</span></a>
or contact your TEDDY site by email or phone.<o:p></o:p></div>
TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-7724950555752491482012-08-13T08:34:00.001-06:002012-08-13T08:34:28.819-06:00Busy TEDDY Night with our little pirate!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ2Ymf_3KuVgObF9cp-zQI-TthqOnISDUzYC_IEIU_2gIU0VcuPIckVyim8ze3yNe6mn1SWlHcJxrJP5_CoqrnECFngElLpyeOQyGEecphx0K3hBdei9OmsOEX5R6d1VuMt20cZ-Pbo0o/s1600/2_6_2012+1397.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ2Ymf_3KuVgObF9cp-zQI-TthqOnISDUzYC_IEIU_2gIU0VcuPIckVyim8ze3yNe6mn1SWlHcJxrJP5_CoqrnECFngElLpyeOQyGEecphx0K3hBdei9OmsOEX5R6d1VuMt20cZ-Pbo0o/s320/2_6_2012+1397.jpg" width="213" /></a></div>
Tonight was Halloween, a fun exciting time that usually ends with too much sugar and tempers running high all around. It also happened to be the 3rd day of our TEDDY 3 day diet record and a stool sample was a little over due. Wow, the whole weekend was full of candy with my husband and me trying to remember exactly what he ate. Earlier in the afternoon on Halloween I had reminded my son we needed a TEDDY sample as the day before he’d gone when we were out. If he pooped in the bucket he’d get a sticker and a Dum Dum pop he really wanted. After trick-or-treating was over for an hour and I was just getting the diet typed up he comes to me, “Mommy, I need TEDDY ‘ample” he was so excited and was reminding me he needed to poop in the bucket so he could get his sticker and blue Dum Dum (as if he hadn’t had enough candy already but a promise is a promise).<br />
<br />
<br />
While I’m collecting the sample he runs back to our kitchen and as my husband was distracted by Monday Night Football my son starts pushing buttons on my computer. I hadn’t saved the diet record and he somehow created an error that shut my computer down<br />
<br />
Tempers were definitely high then as we all know how much work it is to get that diet record complete. I had only written down part of what he’d eaten, all the recipe details were typed in that evening. I was hoping and praying as I restarted my computer and then so relieved that Word was able to recover the document with all that work. Now the diet is complete, the stool sample was collected and scheduled for pick up from our front door the next morning and my little pirate is in bed. <br />
<br />Whoops I forgot about that last Dum Dum as a reward for pooping in the TEDDY hat, better type that in and click save…TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-86946134685980129072012-04-11T11:06:00.005-06:002012-04-11T11:23:10.157-06:00Elmo Goes to TEDDY<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVdM4UYc3TT7geLmxdTS8_y7fPYckOTIRrItIzCL4WfNxtI8bnNN3cJfVBYv0o2HKcp_4CsCs8YeypKTdRTRgfOhp9lZgZdyqVGCAYq4sCwMtMx-dBuFS6hUbGI-u8fmBIGXWZKo173Dc/s1600/Blog1.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 134px; FLOAT: left; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5730192536029244306" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVdM4UYc3TT7geLmxdTS8_y7fPYckOTIRrItIzCL4WfNxtI8bnNN3cJfVBYv0o2HKcp_4CsCs8YeypKTdRTRgfOhp9lZgZdyqVGCAYq4sCwMtMx-dBuFS6hUbGI-u8fmBIGXWZKo173Dc/s200/Blog1.jpg" /></a>We just had another great TEDDY visit! My son continues to amaze me and my husband with how well he does with his blood draws. While I hope for the best I do tend to prepare for the worst, or maybe not the worst but I prepare for some trouble. My son’s “lovey”, or security object, is a stuffed Elmo we bought on a vacation last year. Elmo has made several trips to TEDDY just to help out with the height and weight which has always been the most difficult part for my son. We must weigh and measure Elmo, then mommy, then sometimes the TEDDY staff then it’s my son’s turn. With children who have difficulty or fear during blood draws this type of play can often be the first step to success. Role play is a powerful tool to use with children to conqueror their fears. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbjW1w4aJkWu62aIuQ7bdA9HHU1N9JCVJFaOme2MgZz-8Ejm6fWHtXyMxL3qRRi4BmXONLEVRnEG7JqoR8dU4hyphenhyphenXjw0Krsj0kdfYZ_THiMD43mQG8qcUsM2ZFTnpNuO9n8Ly-JUmvgTEg/s1600/Blog2.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 134px; FLOAT: right; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5730192755770201538" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbjW1w4aJkWu62aIuQ7bdA9HHU1N9JCVJFaOme2MgZz-8Ejm6fWHtXyMxL3qRRi4BmXONLEVRnEG7JqoR8dU4hyphenhyphenXjw0Krsj0kdfYZ_THiMD43mQG8qcUsM2ZFTnpNuO9n8Ly-JUmvgTEg/s200/Blog2.jpg" /></a> <br /><div><br /><div><br /><div><br />A TEDDY staff nurse who has worked for TEDDY for over six years wrote the following about the use of role playing and blood draws.<br /><br /><em>We have a really wonderful child development specialist, Donna, who works with TEDDY in helping some of our children who are EXTREMELY scared of needles and blood draws. When Donna works with these kiddos, among other things, she uses role playing and modeling as a way to help our TEDDY children deal with their fears and concerns. We, as the clinic staff, have been using some of Donna’s role playing and modeling techniques ourselves at the TEDDY clinic visits. For those older toddlers and younger school-aged children who are anxious about having their blood drawn, role playing is a great way to get them to understand the blood draw process so they can prepare for it and feel a sense of control over how they react to it and a sense of accomplishment after it’s over.<br />We use a stuffed animal for the role playing and go through the blood draw process just like we do with the kids. We apply the tourniquet, we wipe the arm with an alcohol swab, we use a capped needle and syringe to draw some blood, and then put on a band-aid. Then we have the TEDDY child try that same process with the stuffed animal. During this role playing, we also have points in time where the stuffed animal cries or acts really scared. We ask the TEDDY child what he/she could say to the stuffed animal to make it feel better. When it comes time for the TEDDY child’s blood draw, as we’re going along we remind him/her about each of these same steps we did with the stuffed animal. Most of the time, this role playing technique works great – the TEDDY child responds really well to the blood draw (or much better than they had been)! We also give a tourniquet and capped needle and syringe to the TEDDY child to take home and practice with their own stuffed animals or family.<br />Blood draws are a part of life. We’ll always need them as a way to monitor our health. For children, having blood drawn every 3-6 months in TEDDY isn’t enough time to forget about what a blood draw is, nor does it happen so often that they get totally used to it and comfortable with it. Therefore, we can only empower our TEDDY children with ways of dealing with their anxiety and being proud of what they can do.<br /><br /><strong>TEDDY Staff Nurse<br /></strong></em><br />Communication is so important, if your child is struggling with blood draws please discuss what options are available with your TEDDY clinician. <img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 134px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5730193014308949762" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXAlBXU-Ydi63_Q8VTjfV1z-XUcSCI5x1KiKrhaFJ0qhKB3iFhBzIdtGz4kQfAE0wxYJXp4GDFRiMG7AZucCVQXSYig3zAxFslUZtBXp0vFTTCZLjEz9AV56RGM1YDNN4kLLvpm3gbz8w/s200/Blog3.jpg" /></div></div></div>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-84047235662030023782012-02-09T14:56:00.008-07:002012-02-09T15:05:01.541-07:00The blood draw saga continues...<div align="justify"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5707259196373436722" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW181NyKPUt4Igapv1mvDsECH2jPJlAQ97OaYOvmDPQeybnXy8fx9g83UouvwayrVG7OHizI9TFb9NtJ6JKNXaj3vi1POLotafZBdwiVSAtIQRd6uXu2iUTt7cWiqddxdJBurNa5k3Icxp/s320/TEDDY+blood+draw.jpg" />Despite having a couple of <a href="http://teddystudymom.blogspot.com/2011/03/two-successful-blood-draws-in-rowcould.html">successful blood draws</a>, unfortunately the trend did not continue with C’s next TEDDY visit. The 27 month visit started off with a big struggle putting the EMLA cream on at home. He had calmed down by the time we arrived at the TEDDY clinic, but he was still hesitant to come into the building, and when we got to the clinic room, he wasn’t his usual cheerful self but was very clingy and didn’t want to play with the toys. He wouldn’t even smile for the picture!<br /><br />Eventually he settled down while we were going over the questionnaires, and he did great with height and weight, but when it came time to do the nasal swab, he got very upset again. Throughout the winter he has been sick a lot, so has had to go to the doctor when he’s tired, sick and cranky. At his most recent doctor visit, they did their own nasal swab to check for flu, but the way it was done was much more invasive than the TEDDY nasal swabs. I think that C remembered how painful it was, and he wasn’t happy to have to go through that again. He continued to cry throughout the blood draw, and couldn’t be soothed, even with a sucker, until it was time to leave.<br /><br />Needless to say, I was frustrated that it didn’t go well, and I began to wonder if we should stop the study or take a break for awhile. I talked to some of the TEDDY clinic staff members about it and they recommended trying another no-ouch visit with some role-playing next time. It was possible that taking a long break would make it even harder when we did come back, and having another no-ouch visit would be a chance to show C that it doesn’t have to be painful to come to TEDDY. The role-playing would give C a chance to be in control (a big thing for 2 year olds!) and also demonstrate that the nasal swab and blood draw don’t have to be painful.<br /><br />When we left the house for C’s 30 month visit, he said, “NO TEDDY!”, but he says NO to pretty much everything these days anyway, so I wasn’t too worried. This time there was no EMLA, so he was pretty happy when we got there and started playing with the toys right away. He actually wanted to do height and weight several times—I think he liked pushing the buttons on the scales. Instead of doing a blood draw, TEDDY staff member B demonstrated the blood draw on a teddy bear, and then C got to draw the teddy bear’s blood. He really liked “drawing” the blood, and putting the band-aids on the bear. C also gave nasal swabs to the bear, B, and me. However, he wouldn’t give a nasal swab to himself. I think it’s the nasal swab that he dislikes the most.<br /><br />We took the pretend blood draw kit home with us, and plan to practice with stuffed animals at home before the 33 month visit. I’m really glad to have learned about this technique to help with the TEDDY visit and I can’t wait to see how it goes next time. </div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5707259344618944098" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAZCalI0tx0bZRjYisofmPJ9N8WQP8xMQAYnGmZAhBVpP5F9fdYD8w-fopKhfgWeFbWS21K_7oTo8f8o83Aus1wKE94tuqpJWlxhh-H5yGClx0Qm2_VOOvsXZsdNSDtdgyPaYuoMMyyQzg/s320/Teddy+bandaid.jpg" />C'sTEDDYMommyhttp://www.blogger.com/profile/14021654280022601554noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-14188607573948960932012-01-20T11:56:00.001-07:002012-01-20T11:58:29.627-07:00Interview with a parent of a child diagnosed with celiac disease<em><strong>At what age was your child diagnosed with celiac disease? About how long ago was that?</strong></em><br /><em><strong><br /></strong></em>My son was diagnosed at the age of 3, almost 4. He is now 5 so it’s been a year and a half since his diagnosis. He had elevated antibody levels for Celiac Disease at his 3 year TEDDY visit. So, they tested for Celiac again at the next visit 3 months later, and the antibody levels were even higher at that time. We decided to go ahead and do the blood screening one more time at the next TEDDY visit just to be sure, while at the same time consulting with a gastroenterologist to set up an endoscopy and biopsy.<br /><br /><strong><em>Describe how your child was diagnosed</em></strong><br /><strong><em><br /></em></strong>We had the endoscopy and biopsy done a month after our third elevated antibody test at the TEDDY study, and it was confirmed that he had some damage to his intestines. But, it was not significant. The gastroenterologist thought that we had caught the Celiac really early, so we didn’t see the severe damage to the intestine wall that is usually a tell-tale sign of Celiac Disease. But, he felt there was enough evidence to support the diagnosis.<br /><br /><strong><em>Did they have symptoms of celiac before diagnosis? Please describe.</em></strong><br /><strong><em><br /></em></strong>The only symptoms we saw were my son complaining of having stomach aches a lot. He would always say, “My tummy hurts” after eating. Then, when he began potty-training, he would refuse to go and become constipated. At the time, we thought it was a potty-training issue, but now we think it was all connected to the Celiac Disease. He also used to be a great eater, eating all kinds of food and flavors. Now, every meal is a struggle trying to find something that he’ll eat. The dietician we consulted with told us he may have some food aversion to different foods/textures because everything made his stomach hurt before. She said that he would hopefully grow out of it, but so far, getting nutritious and balanced meals in him continues to be a battle.<br /><br /><strong><em>Has anyone in your family been diagnosed with celiac before or after your child?</em></strong><br /><strong><em><br /></em></strong>No. I had never even heard of it before. However, I have since been tested because I was having some digestive issues. The test was negative, but I went ahead with a gluten free diet to see if it helped and it has helped me to feel better. So, I seem to have a gluten intolerance.<br /><br /><strong><em>What has been the most challenging part of your child’s celiac disease?</em></strong><br /><strong><em><br /></em></strong>Eating gluten free has become rather easy in our house, but there have been many challenges and some that still continue. The ones I’ll mention here are the ones that continue to plague us.<br />1) I mentioned before that getting a balanced diet in my son has been a challenge. He won’t eat fruits or vegetables without a lot of coaxing. So, we do a lot of fruit smoothies where I hide some extras like spinach and flax seed. Luckily, he likes the other types of gluten free foods that I make, and it’s getting easier to find convenient boxed items that are gluten free so I’m not spending so much time in the kitchen any more. <br />2) Going on vacation has also been somewhat of a nightmare, depending on where you go. I have learned to appreciate living in the metro area with all of the options close at hand. But, even with trusted stores, they carry different products regionally. We were staying somewhere on the western slope of Colorado one time (either Grand Junction or Fruita) and I went into a City Market there (which is like King Soopers in Denver) and I couldn’t find any of the gluten free products I was used to getting quite easily at King Soopers, even though it’s virtually the same store. The good part is that things continually get better. It seems that if someone doesn’t have something one week, the next time I go in, it’s there (or at least a few months down the road it’s there). Going out of state, I have to arm myself with the booklet the dietician gave us and resort to reading food labels all over again. We try to bring some snacks with us so in a pinch, we’ve got something on hand.<br />3) Some people ask me if it’s hard for my son when there is a birthday party or something where only gluten-filled treats will be offered. Usually this is not an issue because I make sure to send a favorite gluten free treat of his to the party so he doesn’t feel left out (there are so many options now). He has been a pretty good sport about it and he does really well on his own asking if something is gluten free before he eats something that is offered to him.<br />4) The only other thing that is a challenge is having to make his lunch EVERY day. The schools offer healthy lunches, but unfortunately, there is something with gluten offered as the meal choice almost every day. Each month, the only time my son can buy the school lunch is if he can get a burger with no bun or a hot dog with no bun. This leaves us packing his lunch 18-19 days out of the 20 days of school per month. And for a kid that doesn’t like to eat the healthy stuff, it is a challenge to keep the lunches interesting and healthy. This past year, he was in preschool, so the teachers would help to coax him to eat and he still brought home whatever wasn’t eaten so I could see. Next year, he’ll start kindergarten which means he’ll be more independent at lunch time. I’m wondering how long it’s going to take him to realize he could just throw away his food so I won’t know how much he really ate.<br /><br /><em><strong>What do you know now, that you wish you knew when your child was diagnosed with celiac disease?</strong></em><br /><em><strong><br /></strong></em>How easy it is to eat gluten free. It’s really not a big deal any more. I remember when we met with the dietician, we got the booklet that lists all of the additives to food labels that you should be aware of that might contain gluten. Armed with this information under my arm, I ventured out to go grocery shopping at King Soopers. I remember once I got to the aisles with all the packaged food, I was reading food labels and questioning everything and it was so overwhelming. Then I saw all the packaged convenience products we were used to getting that we no longer would be able to have and I just started to cry. I didn’t think there was any way we were going to be able to make this work, or at least I didn’t see a way to make it work without me making every food item from scratch. Don’t get me wrong, I love to cook. But, for a working family, it’s not always feasible to make home-made EVERYTHING every day! After this experience, I learned that King Soopers denotes gluten free products with a “no wheat” label that makes it easy to spot products we can have.<br /><em><br /></em><strong><em>Did you change your whole family to gluten free food?</em></strong><br /><strong><em><br /></em></strong>We eat gluten free for any meals that we eat together as a family which includes dinner every night and any time I cook breakfast items (like pancakes). Otherwise, for lunches or eating out, my husband and daughter continue to eat gluten. Neither of them of shown any signs of intolerance to gluten.<br /><br /><strong><em>Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?</em></strong><br /><strong><em><br /></em></strong>We taught my son if anyone offers him food, he needs to ask if it’s gluten free. If the item is not gluten free or if the person doesn’t know, he is supposed to say, “no, thank you” and eat his own food. He has been very good about asking this on his own ever since the beginning. We pack his lunch every day. Special events, we’ll pack a treat for him like gluten free brownie bites or gluten free cupcakes.<br /><br /><em><strong>What resources have you found to keep your child gluten free?</strong></em><br /><em><strong><br /></strong></em>There are many good websites that have recipes and blogs that are helpful. On Facebook, I have “liked” these pages and they always post good recipes or interesting topics that come up in your news feed. I also have learned a lot from reading the comments of others on these pages, too:<br />· Gluten Free Recipes for Celiacs<br />· Udi’s Gluten Free Foods (love this because they are always asking for your opinion to make their products better or to come out with new products)<br />· Gluten Freely<br />· Rage Against Gluten<br />· Glutenista<br />· Gluten Free Mom (also a website)<br />· Glugle Gluten Free<br />· Gluten Free for Good (also a website)<br />· Denver Celiacs (also a website)<br />· The Celiac Diva<br />· Celiac.com (on Facebook, and website)<br /><br /><em><strong>Would you share a recipe for a gluten free treat your child enjoys?<br /><br /></strong></em><em><strong></strong></em>This recipe is from <a href="http://www.celiac.com/">www.celiac.com</a>:<br />These brownies are better than the gluten-filled variety. I usually don’t even bother with the frosting, but I’m sure they are that much better with it. Enjoy!<br /><br /><strong>Here Comes Trouble Brownies (Gluten-Free)</strong><br /><strong><br /></strong>This recipe comes to us from Valerie Wells.<br />(1) Melt 1 stick of butter, 2 squares of unsweetened chocolate plus 1 tablespoon coconut oil or other cooking oil in an 8 square baking pan (I put them in the oven for 4 or 5 five minutes while it preheats and I assemble the other ingredients. Be careful not to over heat it and burn the chocolate).<br />(2) Add to pan:1 cup sugar1 tablespoon unsweetened cocoa powder¼ cup gluten-free flour (half <a href="javascript:void(0)">rice flour</a>/half <a href="javascript:void(0)">corn starch</a>)¼ teaspoon <a href="javascript:void(0)">xanthan</a> gum (optional)2 tablespoons Jell-O Instant pudding mix (I used vanilla flavor)2 eggs1 teaspoon vanilla<br />(3) Stir until smooth. Bake 27 to 30 minutes at 350F. Cool before frosting.Frosting: Gently soften ½ bag semi-sweet chocolate chips plus 2 tablespoons butter in the top of a double boiler (or a metal or glass mixing bowl set over boiling water). When thoroughly melted, stir in a few tablespoons of powdered confectioners sugar until smooth. Spread over <a href="javascript:void(0)">brownies</a> and sprinkle with chopped nuts while still warm.TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-25132943209776667922011-11-14T15:31:00.004-07:002011-11-14T15:41:32.915-07:00Down and dirty, potty trained stool samples<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit3wV9eGU7WQJ_xmKHIWIn_KBcr02XwiAAdPYAEfmQ2hhr3t7ExNApp_pY-sYidYE6xMpjq-SRe10P78h9-y2-fLsujISRPX0WbGp49Imi6cRItBICRI456JLg2xeM-7whyfcqz1L4Q0I/s1600/Collection+Device.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 200px; FLOAT: right; HEIGHT: 134px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5674983891952889666" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit3wV9eGU7WQJ_xmKHIWIn_KBcr02XwiAAdPYAEfmQ2hhr3t7ExNApp_pY-sYidYE6xMpjq-SRe10P78h9-y2-fLsujISRPX0WbGp49Imi6cRItBICRI456JLg2xeM-7whyfcqz1L4Q0I/s200/Collection+Device.JPG" /></a> <br /><div>The following blog post is not for the faint of heart. While I will try and limit the grossness as much as I can I’d like to give as many details that may help others. I’ve written before, click <a href="http://teddystudymom.blogspot.com/2011/04/potty-trained-much-easier-for-parents.html">here</a> to read that blog, about my son potty training early and that I thought TEDDY stool collection would become more difficult. As of writing this we are 5 months in collecting samples with what we fondly call the “TEDDY poop bucket.” So far collection is going much better than I imagined, it is definitely more difficult than diapers and has required some thinking outside the box.<br /><br />A potty trained TEDDY stool sample kit includes a round plastic tub with a lid and triangle frame that the tub is supposed to sit in. The whole contraption goes under the toilet seat. The child sits on the toilet and poops directly into this “hat.” Then the parent collects the stool from the tub. In my experience collecting the stool from the tub isn’t that much different than collecting from the diaper. The problem is getting the stool into the tub. We have been successful on each attempt but used a couple different methods. My son has yet to let us collect his stool in the traditional way by pooping in the “hat” under the toilet seat. Instead we’ve floated three times and scooped twice.<br /><br />I simply float the tub in the toilet water and hope it is in the correct position to catch something. This worked flawlessly for us on our first and second month. I then discovered the tub needs to be put in the toilet discreetly and with no fuss on our third attempt. We were a week past the due date and on my first attempt that evening to collect stool my son missed the tub. Later that night my husband forgot to put the tub in as he got the potty seat ready for my son. I tried to have him stand up and sneak it in but he wasn’t having any of that and refused to poop. We quickly removed the tub and I put a layer of toilet paper in the water to catch the stool. The toilet paper worked well and after my son left I easily scooped the stool out with the tub and collected the sample. I always put the tub directly into a grocery bag to avoid dripping any toilet water.<br /><br />The next month, as soon as he said he needed to go, I sprinted down the hallway ahead of him with the tub in hand. I got it into the toilet without him seeing but he knew something was up. When I left, he was seated on his potty seat but about 10 seconds after I shut the door I heard the sound of the plastic tub hitting the floor. I tried the toilet paper and scooping again that time and that’s how I collected that month.<br /><br />The following month I collected only a few days after his TEDDY visit so TEDDY was fresh in his mind. I tried a new approach when my son told me he had to go and said, “Do you want to poop in the TEDDY bucket?” with lots of enthusiasm, like it would be a lot of fun. He was excited and said yes and waited for me to get it out of his closet and float it in the toilet. Success!<br /><br />Well, we definitely haven’t found a rhythm yet but I think we’re heading in the right direction.</div>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-90444918106236158492011-10-20T17:08:00.003-06:002011-10-20T17:11:41.745-06:00Diet Records: A Note from the TEDDY Staff -- Part 2<em>This is part two to the questions and tips on recording diet, part one can be found <a href="http://teddystudymom.blogspot.com/2011/09/diet-records-note-from-teddy-staff-part.html">here</a>.</em><br /><br /><strong>What if I just can’t get two weekdays?<br /></strong><br />As noted before, we request two weekdays and one weekend day for each diet record because we feel this will give us the most accurate picture of your child’s diet. However, we understand that there may be reasons why this isn’t possible for you. For example, there are a few daycare providers who do not have the time or inclination to assist with this portion of the study. We do not want any of our TEDDY families to jeopardize their relationships with their daycare providers in an attempt to get this information! There may also be other reasons why you are unable to complete a diet record according to these specifications. If the ideal diet record of two weekdays and one weekend day is not an option for you, we do understand. The computer system mentioned before is unable to analyze days that are incomplete – for example, days with breakfast and dinner only, but no information about lunch and snacks. So our preference in this case would be to use days when the child is with you all day or with someone who is willing to help you keep track of what your child eats. If, at the time of the visit, you do not have all three days completed, please just bring us the days that you have. We can always work with you to get the remaining day(s) at a later (hopefully more convenient) date, or we can use the data that you do have. We would not want to waste the effort that you put into a diet record simply because it does not meet our guidelines exactly. And for those of you with children who will be starting school soon (or are already in school), we are currently working on some tools and tips for collecting diet information from the time your child spends at school. Please feel free to ask your clinician for an update at your next visit!<br /><br /><strong>Does my diet record reflect a normal diet for my child?<br /></strong><br />Finally, some parents are concerned that the diet records they are giving us are unrepresentative. Possibly without even meaning to, they think they are giving their child foods that are more easily measured, or using recipes with fewer ingredients, to help them more easily report what their child eats. Of course, we all know that the idea behind the diet records is to provide the study with an accurate picture of your child’s eating patterns. And we would like to extend an extra thank you to those families who are making a conscious effort not to change their child’s diet for ease of reporting. However, if you do worry that changes like the ones mentioned above are showing up on your child’s diet records, please do not feel bad. Even though these kinds of changes may seem substantial, the truth is that those changes are probably not making as big of a difference at the micronutrient level as you might think. Your basic philosophies regarding food preparation and eating are still in place. A family who usually uses salt only sparingly will not add large amounts of salt to their child’s food on a diet record day.<br /><br />Other related concerns involve the days on which a diet record falls. For example, we heard a lot of comments around Halloween that the candy eaten around this time of year really does not represent the child’s candy intake during the rest of the year. We understand this. It might help to not think of us analyzing any one particular day, or any one particular diet, alone. When we look at the data, we will be looking, not just at your most recent diet record, but at all of the diet records you’ve given us in the past, and all of the diet records that you will give us in the future. Imagine throwing all of these days into a big pot, and then adding all of the past and future diet record days that we have received and will receive from thousands of other children, and then stirring it all up. We will look at that big soup of diet records for our analysis, not at any one particular record or day. So even though your child’s diet record may have fallen on Halloween this year, someone has to represent Halloween in order to give us the bigger picture of TEDDY children’s diets around that time of the year. But there are many, many other diet records that we receive all year round from days other than Halloween, so those other days will be represented in our analysis, too.<br /><br /><strong>Why am I doing this, again?<br /></strong><br />To conclude, we know that diet records can be difficult. We do not want you to regret your participation in this study because of them. Please, first and foremost, do what you need to do to maintain your sanity! Hopefully the paragraphs above will give you some peace of mind about what many families consider to be “imperfections” in their diet reporting. We at the TEDDY Study do not expect you to be superhuman when it comes to diet records. All we ask for is your best effort, and that best effort may look a little different from day to day, and from family to family. We admire each and every one of you for the help you give us toward the ultimate goal of preventing diabetes. The diet records you complete are an incredibly important step in achieving this goal. Researchers believe that certain elements in a child’s diet could possibly play a key role in determining whether or not a child with high risk genes for type 1 diabetes goes on to develop the illness. Unfortunately, we still do not know which elements of a child’s diet are the determining factors. We would love to be able to tell all of our TEDDY parents that, by increasing or decreasing their child’s exposure to certain foods or nutrients, or by altering their feeding patterns, they can improve their child’s chances of never developing diabetes. I know everyone in this study wishes that we had that kind of information at our disposal. But it is the work that you do in maintaining these diet records that will give us the best shot at being able to provide this kind of information to parents in the future.<br /><br /><em>Sincerely,<br />The TEDDY Study Staff</em>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-37862487637592508512011-09-09T15:16:00.003-06:002011-09-09T15:22:07.896-06:00Diet Records: A Note from the TEDDY Staff -- Part 1On behalf of the TEDDY Staff, we want to thank everyone for all of the work you do to benefit this study. And we want to give you a special thank you for completing the 3-day Diet Records. Trust us, we understand that these can be tedious and labor-intensive. We know that they are always inconvenient, and often frustrating. And we want you to know that your work does not go unnoticed. We would like to take this opportunity to address some of the most common challenges involved in keeping the diet records.<br /><br /><strong>I don’t know exactly how much my child ate!<br /></strong><br />First, we know that it is difficult to know for sure exactly how much a child eats. Many of us who work for TEDDY have children at home, too, so we see that not everything you give a child ends up in their mouth. We know that it is very difficult, for example, to estimate how much applesauce a child may have in their hair after a meal, and that you may not discover the ¼ cup of cheerios that mysteriously ended up in your child’s diaper until the next diaper change. All we can possibly ask from you as TEDDY parents is to give us your best estimate when it comes to the amount of food that your child ate. Of course, there will be some “human error” (as the scientific community puts it) involved with “self-reporting”, but this study is designed to accommodate that. Some of you may have no problem reconciling yourselves to this fact, but for the perfectionists out there, this may be a continued source of frustration. But please know that, from the standpoint of the study, estimates and “best guesses” are expected, and this will still provide us with the information that we need to reach important conclusions regarding the causes of diabetes.<br /><br /><strong>What about daycare?</strong><br /><br />Second, we know that some of the meals that your child receives may be outside of your control. And not only that, you may not even have been present for some of the meals! By requesting two weekdays and one weekend day, we know that, for many of you, this requires getting information from daycares and schools. In fact, this is the idea. To get a really good picture of what your child eats, it makes sense to not only include the meals they get at home, but also the meals they eat away from home, especially if this is a regular part of their diet. A child’s diet is impacted greatly by who is offering them their meals, and a daycare may provide foods that are different than those you give your child at home. Some daycare providers do a wonderful job helping us with this portion of the study, and are even happy to be given the opportunity to participate in something they view as important. We have received feedback that giving a daycare provider some information about the study and what these diet records are helping to achieve may make them even more willing to help out. (How much information you share with your daycare provider is, of course, completely up to you.) Even the most enthusiastic daycare providers may need a little direction from you, at first, though. It is a good idea to tell them specifically what kinds of information we need. For example, tell them that we need to know how much of each food item your child ate, not just what was on the menu. They will feel less frustrated with the process if they know what is expected and can feel like they are doing a good job.<br /><br />Other daycare providers, although they try to help, are unable to provide us with all of the details that we ask about. When reviewing your diet record, please know that we have to ask clarifying questions, but we expect that your knowledge of the meals that your child receives outside of your care will be limited. We never mind if you have to tell us, for example, that you don’t know how your child’s oatmeal was prepared because they ate that meal at daycare. We enter the diet records that you give us into a computer system that gives us very detailed information about the calories and nutrients a child receives throughout the day. Generally speaking, this computer system requires a great deal of detail regarding the type and preparation of foods in order to provide us with this kind of information, which is why we ask so many questions when we review the diet records. However, this computer system also has ways to accommodate some “unknowns”, meaning that meals eaten at daycare, even if you don’t know some of the specifics, can still provide us with very useful information. Foods eaten at a restaurant, or at a friend’s party, or any time when preparation details are not known, are entered in the same way.<br /><br /><br /><br /><em>The above post was written by a TEDDY staff member who is involved with the diet collection both locally and over all 6 TEDDY sites. Part 2 will be posted in a couple weeks.</em>TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-7338586738306335062011-07-26T13:18:00.003-06:002011-07-26T13:22:55.803-06:00Recording my child’s diet, how hard could that be?Because I work for TEDDY, before C was born I knew about the diet collection. I even helped out during the training phase by recounting my own diet to be entered into the computer. But honestly, the most difficult parts of the diet collection seemed to be entering it into the computer and uploading it to the main diet database. I guess that IS the worst part from a staff point of view—little did I know how complicated the diet records could actually be!<br /><br />At C’s first TEDDY visit when he was 3 months old, I knew in advance that there would be a 24 hour recall of his diet but I didn’t give it much thought. How hard could it be—C was exclusively breastfeeding every few hours—no measuring needed! When B said it was time to do the diet record I said confidently, “Just breastmilk!” Then she said, “OK, starting after midnight, what time did he first have breastmilk”? HOLD ON—I have to remember what TIME I dragged myself out of a deep sleep to feed my 3 month old? I’m trying to block out those middle of the night feedings from my memory! I don’t WANT to remember that my sleep was interrupted 3 times last night! It was then that I knew the diet record would not be my friend.<br /><br />When C’s 6 month birthday rolled around we still hadn’t started solids and to be honest, I was resisting it because I loved being his only source of nourishment. Then I got the 3 day diet record in the mail. Flipping through the pages, I knew that I did not want to have to include bites of cereal that he may have eaten, or may have dribbled down his chin into the chubby folds of his neck. Problem solved—no solids until after the 6 month TEDDY visit!<br /><br />When it was time for the 9 and 12 month visits I knew I had to bite the bullet—C was well into solids by that point and I was going to have to suck it up and record it. Fortunately he was pretty good at keeping it in his mouth by that point and the store-bought jarred food was easy to record. Maybe this diet thing was going to be okay after all.<br /><br />Then we got to the 18 month visit. The first day of the 3 day diet I had such good intentions. I put all his food into a measuring cup before giving it to him. I even copied recipes to bring to the visit. On day 2 I was feeling so ahead of the game that I gave him his painstakingly measured food, neatly wrote it all down, and then turned around to smile at C in his high chair, only to see him feeding all the food I had so carefully measured to the dog!<br /><br />It’s nice that the diets are only collected every 6 months now that C is older but I can already see the 2 year diet record will be a challenge. Often throughout the day C will stop his playing to pry open the pantry door in search of Cheerios or animal crackers. Sometimes he asks politely for them but he really prefers just grabbing the box, shoving in his little hand and taking out a huge handful, some of which makes it to his mouth and some that the dog snatches as it falls to the floor. I never thought I would give so much thought to the amounts of food my child eats!<br /><br /><em>Coming up next—a two or three part series of posts about diet collection tips from a TEDDY staff member</em>C'sTEDDYMommyhttp://www.blogger.com/profile/14021654280022601554noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-69272485329611360382011-06-28T15:08:00.005-06:002011-06-28T15:21:11.628-06:00Interview with a parent of a child diagnosed with celiac disease<strong><em>At what age was your child diagnosed with celiac disease? About how long ago was that?<br /></em></strong><br />My daughter was diagnosed at a little over age 3. We officially made the diet change the day after Thanksgiving, about 3 months ago.<br /><br /><strong><em>Describe how your child was diagnosed.<br /></em></strong><br />I received the dreaded call from a TEDDY Study phone number about 6 weeks after our TEDDY visit. I was convinced they were going to tell me that one of my kiddos (I have two in TEDDY) was showing antibodies to insulin because I am Type 1 Diabetic. When she said that Madelyn had celiac antibodies I was surprised. I didn't know much about celiac except that I had been tested before and I didn't have it. The TEDDY study likes to have two elevated levels in a row before sending you to a gastroenterologist. I don't like to wait around – especially when it comes to health related items – so I immediately called my PCP to see what we needed to do. I was driving when I got the call, so as soon as I got home I started researching online what the numbers meant. I wanted to see how likely her levels meant she had it. The problem was that TEDDY uses state of the art laboratories that most hospitals don't have access to...so the internet didn't have anything about what her levels actually meant. When I saw my PCP he said, if her levels are elevated she has it – the blood tests are over 95% accurate. I asked if we should see a GI doc and he put a call into them. We went to see the GI doctor and he did an endoscopic biopsy. The doctor could see some damage right away and said he was very confident she did have it. When the pathology came back two weeks later we had our answer...she has celiac disease.<br /><br /><strong><em>Did your child have symptoms of celiac before the diagnosis?<br /></em></strong><br />Yes and no...We didn't know and weren't looking for the symptoms so we didn't notice anything before the call from TEDDY. After learning some of the symptoms we found she had several. She is tiny and after each meal she had bloating – she looked like the children on TV that are in poor countries and starving. We just thought that because she was so small the food had nowhere to go but out. She pooped three to four times a day and they were loose and floaty. I heard stories of how hard it was to potty train for pooping and I was so glad it was easy for us...she went all the time. We never dealt with constipation – I thought we were lucky. She was always tired. She took long naps and slept at least 12 hours every night – even then she acted tired. She didn't like sandwiches. It sounds weird but I could never get her to eat them. I am told she may have known that she didn't feel good after eating them so she refused them.<br /><br /><strong><em>Has anyone in your family been diagnosed with celiac before or after your child?<br /></em></strong><br />So, our GI doctor said that celiac runs so strongly in families that you should test any first degree relatives. Both my husband and myself were tested. The doctor was convinced I had it because it is also linked to diabetes....but it was actually my husband who has it. We don't know how long he has had it but he had very extensive intestinal damage by the time we caught it. They also found a liver and thyroid problem that they feel is connected to untreated celiac disease. He then had his Mom tested because she has several autoimmune diseases and she also has it. Our son is younger, 18 months, and the testing isn't reliable until around 2 but we think he may have it as well.<br /><br /><strong><em>What has been the most challenging part of your child’s celiac disease?<br /></em></strong><br />I think the mental piece – I LOVE bread and gluten filled items and I grieve that for her. But she doesn't mind the diet one bit. She never complains about not being able to have something – even when we skip out on the Costco samples. It is also scary because I feel like you can never control it enough. They say even one crumb can cause an immune response. How do you ensure that one speck of gluten didn't accidentally make its way into her food. At this point, we control what we can and do the best we can. In three months we have only eaten out twice – restaurants are still scary places, but I think in time we will find acceptable places.<br /><br />As far as the practical side of things, lunches and snacks are the hardest day to day items. We always have the car full of snacks just in case we are out longer than we expect. We can no longer just swing by the closest restaurants and grab a quick bite – so we always need to have something to tide her over until we get home. Lunches are a quandary everyday because we can't do quesadillas – her old favorite – or sandwiches. We are left with hotdogs without a bun or nachos. I hope to build up some more ideas here soon.<br /><br /><strong><em>What do you know now, that you wish you knew when your child was diagnosed with celiac disease?<br /></em></strong><br />That kids adjust so much better than we give them credit for. Madelyn polices things herself already at 3 ½. She asks if things are gluten free. She doesn't eat anything she doesn't know is safe unless she has asked an adult. She hasn't mourned the loss of gluten for even a second. She accepts this as her reality and is ready to take on the world.<br /><br />Going gluten free is a whole new way of thinking and eating. But once you make the change- I would say about 6 weeks in – it isn't that hard. You do a little more baking, a lot of cooking at home, and you grocery shop in a whole new way – but these aren't bad things, just different.<br /><br /><strong><em>Did you change your whole family to gluten free food?<br /></em></strong><br />Yes and no. I make one dinner every night and it is of course gluten free. I struggle with the idea of allowing crumby gluten filled items in the kitchen – regular bread, bagels, treats – just out of fear of contaminating my kitchen. So, I bake gluten free bread and treats and we all just eat those. There are some snack foods that are gluten filled in our house for our 18 month old – goldfish, graham crackers.<br /><br />Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?<br /><br />We are enrolling her in preschool next year. This was and is a stressor – again the idea of how do you know the snack table was cleaned before snack time. But, I researched a ton of preschools and found one that I feel like can keep up on her dietary needs. I will provide all of her snacks. Now, she also goes to a mom's group where she is in daycare for 3 hours a week and they give the whole class Fritos for snack – which are gluten free. Honestly, we haven't had any birthday parties to attend yet. With family gatherings I usually bring bread or something to add to the meal. I also have in-depth conversations with the cook to make sure they understand what to look for and so I know what's on the menu.<br /><br /><strong><em>What resources have you found to keep your child gluten free?<br /></em></strong><br />I found the <strong>University of Chicago Celiac Disease Center</strong> soon after we got the TEDDY call. They have an amazing website, as well as hotline. They wrote a children's book called <em>The Trouble Jack Had</em> that does a great job of explaining to kids what celiac is. They also sent her a great gift basket with samples when she was officially diagnosed. Their website is: <a href="http://www.celiacdisease.net/">www.celiacdisease.net/</a><br /><br />I was lucky enough to distantly know someone whose daughter also had been diagnosed with celiac disease two years before me. It was great to have someone get me pointed in the right direction. I would highly recommend seeking out <strong>other parents of celiac kids</strong> to get started.<br /><br />The <strong>Gluten Free Living</strong> magazine is full of great information about celiac disease, but it's a little expensive and only published quarterly.<br /><br />We also order a lot of our snack and baking items from <strong>Amazon.com</strong>. I didn't even know they sold food until she was diagnosed! They often have the best prices and I enjoy being able to order in bulk.<br /><br /><strong>Pamela's Products</strong> and her website <a href="http://www.pamelasproducts.com/">http://www.pamelasproducts.com/</a> are a great place to start when you need baking mixes and recipes.<br /><br />There is only one book about kid's and celiac disease and I found it to be worth the read. <em>Kids with Celiac Disease</em> by Danna Korn<br /><br /><strong><em>Would you share a recipe for a gluten free treat your child enjoys?<br /></em></strong><br />This is an awesome Chocolate Chip Cookie Recipe from Pamela's website:<br /><br /><strong>Toll House® Style Chocolate Chip Cookies</strong><br /><br />1/4 cup butter<br />1/4 cup white sugar<br />1/4 cup brown sugar<br />1 egg<br />1 teaspoon vanilla<br />1-1/2 cups Pamela's Baking & Pancake Mix<br />1 cup semi sweet chocolate chips<br />1/2 cup chopped walnuts<br /><br />Cream butter and sugar, add egg and vanilla and beat. Add Pamela's Baking & Pancake Mix, incorporate slowly and then add chocolate chips (and nuts). Place scoops of dough on a lightly greased cookie sheet. Flatten. Bake at 325° for approximately 12-15 minutes. Let cookies cool slightly and use a spatula to remove from cookie sheet.TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.comtag:blogger.com,1999:blog-4674556748229458472.post-88981308137085284282011-06-15T11:51:00.002-06:002011-06-15T12:07:04.583-06:00Another good TEDDY visit!Another great visit! At least I didn’t jinx us like I thought I might <a href="http://teddystudymom.blogspot.com/2011/01/blood-draws-piece-of-cake-at-least-so.html">here</a>. My son did great with his blood draw again, so well that my husband didn’t understand why another child was upset. He’s only been able to make it for a couple of visits and missed the visits where during the height and weight you’d have thought we were torturing him. Both visits he attended our son was an angel for the entire visit and was fascinated watching/popping bubbles and looking at the blood come out of his arm. I’ve explained to my husband that not every child’s blood draw is this easy and we’re very lucky the visits have gone so well for our son.<br /><br />I know at some point in the future the blood draw may scare him. It’s been great having blood draws go well so that I know it doesn’t hurt. We think the numbing cream is amazing. He’s almost at the age where I expect him to remember the drill and get excited about picking a prize and our fun trip to the zoo or museum after his visit. I only hope the visits continue going so well for our son as it makes our participation in TEDDY so easy.<br /><br />Now the hard part, waiting for the antibody results…TEDDYMomhttp://www.blogger.com/profile/10361465982192298656noreply@blogger.com