8th Grade Capstone Project - Data Newsletter

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!
PDF link for Marissa's TEDDY Data  newsletter

Colorado’s TEDDY Study Manager Retires!

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. 

———————

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  

Interview with a TEDDY participant

Interview with Chelsea, 14 years old, a TEDDY participant who is soon to be a TEDDY Graduate

What is your earliest memory of the TEDDY study?

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.

What was your favorite part of being in TEDDY?

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.

What did you find most challenging?

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.

If someone asked you, “What is TEDDY?” what would you tell them?

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.

What was the most important thing you learned from TEDDY?

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.

What do you hope TEDDY has learned from your participation?

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.

How did you feel differently when you learned about your positive autoantibody result?

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.

What would you tell other TEDDY kids about getting a positive test with TEDDY?

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.

 

15 Year Visit - Thoughts on the end of TEDDY: Interview with Tricia Gesualdo

All participants finish the TEDDY research study with their finial visit at age 15. 

What considerations go into ending a study?  

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.

Emotions aside, there is a careful attention to detail that goes into ending a protocol.  “Oh no, what if we miss something?” or “What if we don’t get to ask _____?”.  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.  We are confident we have done our best.

How should a family prepare ahead of their final visit?

Please talk to your TEDDY child and remind them this is their last visit.  How does that make them feel?   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.  Encourage your kids to ask us questions.  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.  

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.  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.  

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.  Your feedback is very important to us; we don’t want you to feel pressed for time when completing the questionnaire at the visit.  

What can a family expect during their final visit?

The staff is booking an hour and a half for the 15-year visit.  It is really important to us to be able to celebrate this huge accomplishment with our families!  The visit may not take that long, but we don’t want it to be rushed.  We want to make sure you all have the time you need as well.  

What options are there for families after the final visit?

We recognize families are accustomed to having the close monitoring every 3-6 months.  Families have shared concerns that they are not going to have the TEDDY test results anymore.  We recommend checking in with us in 6-12 months.  We can let you know what research study options we have at the Barbara Davis Center for autoantibody testing. 303-724-7577 teddy.study@ucdenver.edu 

Why is it important for the final visit to be at the BDC for those living in the Denver Metro Area?

TEDDY clinics at our offsite locations offer a convenient and quick visit for families.  However, it is not going to be enough time for the final visit.  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.   We have Saturdays or we could schedule after school. We will do our best to be  flexible since we are asking you to make the drive to Aurora,

How many subjects have graduated from TEDDY to date?

By the time this goes out, there will be over 15 kids completing TEDDY in Colorado! 

How do you, as a clinician, feel about the end of TEDDY and saying goodbye to families?

That’s a tough one! OMG! There’s definitely mixed emotions. Professionally, I am SO 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.  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.  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! 

Overall, I feel like we have grown up together. I’m not very fond of goodbyes.  So I won’t want to think about it quite yet.  For now, THANK YOU for your commitment to T1D research and your dedication to the TEDDY Study.  

Tricia Gesualdo has been a lead clinical nurse coordinator for the Colorado TEDDY study since 2004 

Guest Post A TEDDY Staff member at the Seattle TEDDY Center: Follow-up Q&A

How do you manage Greta’s diabetes while she is at school? 

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.

What is the biggest challenge for you and your family with Greta’s diabetes? 

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.

How do you talk to your son about what Greta has gone through and continues to live with? 

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.

Does Greta have a role in the management of her care? How has that evolved over the years? 

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.

What advice would you give to families in introducing ownership of this disease to their children? 

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.

What technologies or tools have you and your family found to be the most useful in managing Greta’s care? 

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. 

Guest Post — A TEDDY Staff member at the Seattle TEDDY Center

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.  

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.

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.

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!”

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

 

 

Guest Post — A “Rita Visit”

For those of you who haven’t met me, my name is Rita Trujillo Hughes.  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.  I meet with kids who have experienced fears or lots of anxiety about getting their blood drawn.  This is a pretty common and normal fear, but one that can be really distressing to kids (and parents!).  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.  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!

Have you noticed that your child may be more anxious about TEDDY blood draws than they were when they were younger?  That there’s more whining and resistance to the idea of getting poked?  Or that they are outright against it?  If so, this is not unusual as kids get older and their brains start to anticipate and worry about needles and pokes.

Our brains are “hard wired” to protect us from perceived threats.  It’s designed to send signals to release stress hormones (fight or flight) that help us manage an emergency. 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.  Think of these as learning simple coping skills that can be useful in any situation that makes us anxious.

Parents:  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.  Learning some skills might help you.  Or you may need to have someone who is more comfortable help out.

Prepare at home:  Ask your child about how they are feeling and what they understand about TEDDY.  Most kids worry about shots, which can be uncomfortable. TEDDY tries hard to minimize any discomfort with blood draws by using EMLA to numb the area.  To minimize worry, be matter-of-fact (“small quick little ouch and done!”).  Ask your child what they think would help keep them calm.  Sometimes an old stuffed animal has to be recommissioned for comfort duty!

Minimize other stressors:  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.

 

And teach some simple coping skills.  These are designed to prevent stress from becoming overwhelming:

BREATHE:  Slow deep calming breaths (“blow out the scared feelings”) helps enormously to calm stress and fear.

Learn about how our Brain works:  I have lots of ideas to keep our “thinking” brain in charge and not let our “fear” brain take over.  We call it using our Wizard Brain to calm our Lizard Brain.

 

EYEBALL Distraction:  Don’t look at the poke.  Make your eyeballs do something else:  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!

Avoid the stalling:  When kids get anxious, they become masters at stalling and avoiding.  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.

Special treat or reward:  Always a good incentive to look forward to.  Some kids like a food treat or a trip to spend some TEDDY money for their hard work as Jr. Scientists.

Ideally, kids should not be restrained during blood draws because that increases their sense of fear and loss of control.  Better that they have some control and are assured that using breathing and distraction really works!  Most of the time, techniques like the above help a great deal. 

If your child really gets overwhelmed with blood draws, talk with your TEDDY staff to see if we can schedule a “Rita visit”.  I love meeting new kids and figuring out what we can do to make TEDDY visits and blood draws much much easier.  Parents have told me that some of the skills their kids learn are helpful in other stressful situations too.

 

7.5 Year TEDDY Visit

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 projects 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.

 

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. 

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!

Bye Laraine!

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.

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!

Science Day

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.

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.

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!

My son’s “job” with TEDDY

My 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

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.

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.

I worry about my son's TEDDY results

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?

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?

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.  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.

Guest post: My daughter’s diagnosis of type 1 through TEDDY

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...

At 33 months, Kyli was diagnosed with Diabetes in our TEDDY facility.

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. 

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.

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. 

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.

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! 

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.

Kyli with her family in 2013

 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.

TEDDY Fun with the Big Bad Wolf

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 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?”

We look forward to this year’s TEDDY event at the Butterfly Pavilion!

Why 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.

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.

While many of the children born to staff members were screened for the high risk genes since TEDDY began in 2004, there had not 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. 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.

 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 teddymomblog@gmail.com or contact your TEDDY site by email or phone.

Busy TEDDY Night with our little pirate!

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).


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

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.

Whoops I forgot about that last Dum Dum as a reward for pooping in the TEDDY hat, better type that in and click save…

Elmo Goes to TEDDY

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 TEDDY staff nurse who has worked for TEDDY for over six years wrote the following about the use of role playing and blood draws.

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.
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.
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.

TEDDY Staff Nurse

Communication is so important, if your child is struggling with blood draws please discuss what options are available with your TEDDY clinician.

The blood draw saga continues...

Despite having a couple of successful blood draws, 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!

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.

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.

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.

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.