Wednesday, January 26, 2022

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.

 

Thursday, March 19, 2020

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 

Thursday, February 7, 2019

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. 

Tuesday, May 15, 2018

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.

 

Wednesday, July 20, 2016

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!

Tuesday, April 12, 2016

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!