Sam’s TrialNet

I took baby Sam to his first TrialNet appointment today. If you haven’t heard of TrialNet, it’s a program that aims to prevent Type 1 diabetes and preserve insulin production before and after T1D diagnosis. They conduct clinical trials related to this goal and they screen individuals with relatives who have T1D for autoantibodies. The testing is free and does not go through your insurance at all. Screening can start at age 1, and can be done yearly for siblings up until age 18. (Side note: I was screened, too, last year. I had no antibodies.)

TrialNet has screening locations set up all around the country. We’re lucky in that our local Children’s Hospital houses a TrialNet location. If you don’t have a location nearby, you can order an at-home kit, or a lab kit that you take to Quest Diagnostics.

So what does a TrialNet appointment entail? A simple blood sample. For Sam, it specifically was 2 cc (2 mL) of blood. This sounds simple, but with a small child, the process of giving blood is likely a new experience, and a potentially painful one.

Here are some things that really helped our experience:

  • I made sure to arrive at the appointment a bit early to have time to confirm any personal information or sign any hospital forms.
  • Once in the exam room, I got out a few of Sam’s favorite toys and got down on his level to play. This helped get him comfortable with the room.
  • I rubbed a bit of EMLA cream on each elbow pit to help numb the area.

The study coordinator came in to go over and sign forms. She then had a child life specialist paged. A child life specialist is someone who helps families emotionally in medical settings. For Sam, this means providing age-appropriate distraction. The two nurses then started popping in. Sam was a bit wary of them at first, but warmed up to their presence. Once the child life specialist arrived, we took several minutes to just interact with her while the nurses finished getting set-up.

One thing they did was use this really cool light that let them look for veins in his elbow pits and his hands. This helped them pick a location that would likely work well for the blood draw. We then sat in a big chair together with Sam on my lap and board over top, so sort of like a high-chair. On one side were the nurses, on the other was the child life specialist. We worked together to distract Sam as the nurse worked. They sprayed a teeny-tiny amount of numbing spray, which I doubt did much, so I was glad I had put EMLA on earlier. They quickly had the needle in and his blood draw was over within a minute or two. Sam really only had one moment where he tried to grab at what the nurses were doing, but other than that he was great! No crying at all!

And what will they do with that blood? They will test it for specific autoantibodies associated with T1D. When testing is done they will send a letter, or give us a call, depending on what they find. Results take four to six weeks.

So now we wait.

Good Morning

Coworker: “Hey. Good morning, Alicia. How are you doing?”

Me: “Oh, hey. Fine.”

What I’m Actually Thinking: I was up all night battling a high blood sugar. I almost washed my face with my conditioner this morning. I have spit-up on my undershirt but I was too tired, lazy, and running late to change it. And I have dried, crusty banana on my sleeve. So please just let me sit here and sip some coffee in peace.

Charlie’s Diagnosis

This is the story of our son’s diagnosis of Type 1 Diabetes (T1D).

It started in mid-October 2016. I made a last minute decision to go camping with friends, just my son and me. (My husband had other things going on.) The first night, Charlie woke up screaming for water, having completely soaked the bed. Luckily, I brought so many blankets, sheets, and PJs that it didn’t matter. I didn’t realize it was all urine, since crazy mom was afraid he’d get cold and had covered him in several blankets. I thought some of the dampness was sweat. In hindsight, it was due to a super high blood glucose, probably from the carb-heavy dinner of pudgie pies, with s’mores for dessert. His thirst continued during the day, and I diligently changed many diapers.

The same thing happened, but less intense, the second night. Then we went home, where his thirst and urination fluctuated for about a week.

After two weeks of this, I called the pediatrician, because if you Google “toddler increased thirst” the first thing that comes back at you is T1D. I didn’t think he had any other signs or symptoms of T1D, so the pediatrician subdued my fears with “it could be related to a growth spurt.” He grew, his bladder didn’t… he can hold it awhile, so he leaks through diapers at naps and nighttime… Our solution was to buy nighttime diapers, a size up. And that mostly solved the problem. We thought he’d grow out of it. And we had his two-year checkup already scheduled, so could always check glucose in the urine then.

A week before his pediatrician appointment, he vomited. The next day he was fine. Then it was Saturday and we took him out for brunch. He had gluten-free pancakes. Within an hour of leaving the restaurant, he vomited again. We thought he had a stomach bug, but in the backs of our minds we were worried. Then we got the stomach bug. My mom was nice enough to care for Charlie while we recovered for a couple days. He came back to us the night before his pediatrician appointment. He had clearly lost weight. We wondered why we seemed to have recovered from the stomach bug, but he was still sick. So we went to the pediatrician early the next day. We had our normal well-visit, and sealed a bag around my son’s boy parts to collect a urine sample. He wasn’t peeing, so we headed home. Eventually, I got the sample and my husband took it back to the pediatrician’s office for testing. My son was napping in my arms when Josh came home and told me that we were being sent to the Children’s Hospital emergency room right away. They would be expecting us.

At the emergency room, my poor, barely two-year-old son was poked and prodded at least hourly for four to six hours. Hourly blood draws are pretty horrific for a toddler. He was put on IV insulin to help bring down his blood sugar. He was in diabetic ketoacidosis (DKA).

Later in the evening, we were admitted to the hospital. We spent the next couple of days there, correcting his blood sugar, helping his body clear out all the acid, and learning how to keep him alive so we could go home.

We left the hospital on a Saturday morning with insulin pens, two types of insulin, pen needles, syringes (which we didn’t know how to use), a glucose meter, test strips, and glucagon (which we didn’t know how to use).

Little did I know, we had only been given the “Survival Day One” crash course. The following Monday, we had “Survival Day Two”. We met with our amazing diabetes educator, dietitian, social worker, and diabetes APNP. We said goodbye to the wonders of insulin pens, and hello to the scary world of measuring 0.25 units of insulin with a syringe. We were given a fixed carbohydrate diet, and scale to use for dosing, depending on blood sugar.

Whoever thought that a toddler that mainly eats real food can easily get 30 grams of carbs at each meal is CRAZY. For reference, my son now eats roughly 50-70g of carbs in an entire day, total. Raise your hand if you’ve ever fought a toddler to eat. Bananas became a go-to food, since one banana is about 20 grams of carbs. And, luckily, this lasted only a couple of weeks.

The day before Thanksgiving, we had “Survival Day Three” and “Self-Management Day One” education. This meant a flexible carb diet and weighing all of Charlie’s food, so we could use carb factors to calculate how many carbs he ate.

Carb factors are neat. Basically, the carb factor of the food is the percent of that food which is carbohydrate. For example, bananas have a carb factor of 0.22, meaning it’s 22% carbohydrate. So if you eat 100g of banana, you are eating 22g of carbohydrate. Pretty neat. Then we do some fun math with ratios to calculate how much insulin to give him. It’s an imperfect science, but has worked amazing well.

Since then, we’ve done a ton more education classes. We’ve read a couple books, too. “Think Like a Pancreas,” by Gary Scheiner, was the most helpful overall. But the tips in “Diabetes Care for Babies, Toddlers, and Preschoolers,” by Jean Betschart, have proved really useful too.

We got a continuous glucose monitor (CGM), the Dexcom G5, which allows us to remotely see his BG at any time. It’s also helped us avoid low blood sugars. We started him on an insulin pump, the Animas Ping, and then later we switched to an Omnipod. That has been a whole new ballgame, but we’ve gotten even better control of his blood sugar by doing it.

It has been crazy at times. I’m grateful that his diagnosis is something that is manageable. It’s a daily thing, but completely livable. Also, the research going on regarding new treatments, drugs, and cures is pretty amazing. I’m hopeful for my son’s future.

Charles is a champ. He’s a hero. He’s amazing. For all that he’s been through, he’s still a really great kid. He’s taken it all in stride. It truly is amazing how resilient kids can be.