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



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!

Thursday, September 10, 2015

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!

Thursday, March 26, 2015

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.