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.