This is Why I Screen My Children for Type 1 Diabetes
This resource was created in partnership with JDRF through the JDRF – Beyond Type 1 Alliance. Now everyone, regardless of relation to someone with confirmed T1D, is eligible to be screened for T1D antibodies. If you or someone you love is interested in T1D screening, click here.
Until recently, the only way to know if your child was developing type 1 diabetes (T1D) was to check their blood sugars routinely or wait for those telltale signs and symptoms of the disease. But those symptoms—constant thirst and frequent urination, weight loss, being tired all the time—only develop when your blood sugar levels have been high (or dangerously high) for weeks. But it doesn’t have to come to this; we don’t have to wait until we or our kids get dangerously ill.
I have tested both of my young children several times for the earliest stages of T1D using both of today’s T1D risk-screening options:
- JDRF T1Detect
- TrialNet: Pathway to Prevention
- Watch Ginger Vieira and Todd Boudreaux discuss screening her children for T1D here.
I’d like to share with you why this is so important and why anyone (with or without T1D in the family, since at least 93 percent of people with T1D have no family history of the disease) should consider having their children tested.
What we know about T1D has changed dramatically
Thanks to over 20 years of research, we have a completely new understanding of:
- when T1D actually starts developing versus when you develop symptoms.
- the damaging effects of diabetic ketoacidosis (DKA) on the body and brain when T1D isn’t diagnosed until blood sugar levels are dangerously high.
- the potential to delay or prevent the full onset of the disease when it’s detected in the earliest stages—long before there are symptoms.
While it’s absolutely scary to imagine that my children might develop T1D some day—and I hope they never do—I can spot the earliest stages of this disease and protect my children’s future health using the T1Detect screening test kit through JDRF.
Can I totally prevent them from developing T1D just because I catch it early? No, there are no guarantees there—yet. But there are many other reasons why testing my children for the earliest stages of T1D matters.
It’s all about the autoantibodies
When your immune system starts attacking your own body, your body produces specific “autoantibodies” depending on what’s being attacked.
There are five types of autoantibodies related to T1D that result from this attack.
In T1D, the immune system is attacking and destroying the beta-cells produced by your pancreas. Beta-cells are responsible for producing insulin!
Without healthy beta-cells, your body will struggle to produce enough insulin to keep your blood sugar levels in a healthy range. If your insulin production drops to severely low levels—and you don’t begin a daily insulin regimen—you will eventually die.
There are several types of autoantibodies related specifically to T1D and we now have ways of easily detecting and measuring them. If more parents start having their children tested, we can reduce the number of deaths each year that result from undiagnosed T1D.
Why early detection of T1D autoantibodies matters
Through ongoing research over the past 20 years, researchers at TrialNet and JDRF have discovered that most people who develop T1D will test positive for two or more autoantibodies during childhood—even if they don’t develop symptoms of T1D until 5, 10 or 20 years later!
This is huge, for two reasons:
- First, there are several therapies in ongoing clinical trials that are successfully delaying or potentially preventing the full onset of T1D in children who test positive for two or more autoantibodies. Even if the delay is by only two years (for some it’s longer), that’s still the difference between managing your child’s blood sugars at age 5 versus age 3, or age 10 versus age 8.
- Second, if you know your child has a high risk of developing T1D based on early autoantibody results, you can monitor blood sugar levels more closely and start them on insulin much sooner. When we aren’t expecting a diagnosis of T1D, blood sugar levels can persist at well above 300 or 400 mg/dL for weeks along with life-threatening levels of ketones. Not only has research found that DKA causes permanent damage to the brain, it also makes blood sugar levels in the future more difficult to manage.
Testing my own children for T1D autoantibodies
I worried about my children developing T1D before I was even pregnant. I think it’s something most people with T1D consider and worry about before deciding to become a parent.
In my teens and early 20s, I used this fear as one of the reasons I didn’t think I should ever become pregnant and have biological children. After seeing so many other people pursue pregnancy and parenthood with T1D—and learning more about tighter blood sugar management—I decided it was something I wanted, too.
But in the early years, if either child seemed a little off their routine or sick, I definitely smooshed urine ketone strips into their diapers. I also pricked one child’s heel to measure her blood sugar levels because of other symptoms she was experiencing. (Turns out she had a structural issue with her bladder/kidneys.)
When I first learned about autoantibody testing, I was skeptical. If I can’t prevent T1D from developing, do I really want to know about it years before it needs to be managed? The worry? The stress?
It turns out that I was wrong, because knowledge is power.
Knowing if your child has autoantibody levels that indicate they are in the earliest stages of developing T1D can enable you to protect them from some of the potential harms of the disease AND potentially delay the full onset of the disease, too.
- At age 3: Both children tested negative for all three types of autoantibodies related to T1D.
- At age 5: My oldest child tested positive for 1 type of autoantibody related to T1D.
- 6 months later: I retested this child and her results were negative across the board. Further discussions with lead researchers from JDRF taught me that mild auto-immunity can come and go, explaining the presence of one autoantibody. This child had a very major surgery on both her bladder and kidneys just a few months before the test that came back with one autoantibody.
- Going forward: I plan to test my children once a year—for the next few years—using the T1Detect Screening Test-kit.
I still have to remind myself regularly that the presence of 1 autoantibody that did eventually disappear does not indicate the early development of T1D. If it were the development of T1D, it would have stuck around and quickly evolved to the presence of two autoantibodies.
Making your child undergo finger-pricks or blood draws isn’t easy
The next hurdle you have to overcome as a parent is the “Eesh, I feel terrible for making my 3-year-old prick her finger or get her blood drawn!”
I hear ya. I repeatedly reminded myself of two things in order to get past those feelings:
Just like getting my child vaccinated for x, y and z, the physical pain of a blood draw (TrialNet) or a few finger pricks (T1Detect) is for their own long-term safety and benefit.
What I would regret more is if I didn’t do the test and missed the opportunity to keep my children safe from the damage of high blood sugar levels, or the potential to delay the progression of T1D in the future. I would have trouble forgiving myself for that.
What is the T1D autoantibody screening process like?
There are two options these days, and they differ in several ways.
The first in the game, TrialNet has been screening relatives of people with type 1 diabetes for autoantibodies for a few decades!
Cost: It’s free for family members of someone with T1D. TrialNet will screen your child at no cost if you qualify.
You qualify for this free risk screening if you:
- Are between the ages of 2.5 and 45 years and have a parent, brother/sister, or child with T1D
- Are between the ages of 2.5 and 20 years and have an aunt/uncle, cousin, grandparent, niece/nephew, or half-brother/sister with T1D
- Have not been diagnosed with diabetes
- Are between the ages of 2.5 and 45 years and have tested positive for at least one T1D related autoantibody outside of TrialNet and have not been diagnosed with T1D
If you’ve already tested negative for any autoantibodies, TrialNet does not offer re-screening.
- At-home test-kit: While there is an at-home test-kit, it’s a bit tedious—especially with small children. It involves pricking the finger (likely more than once or twice) and squeezing blood into a small test-tube. Then mailing it to TrialNet via a prepaid FedEx envelope.
- At the doctor’s office or lab: TrialNet will send you a test-kit that you take to a blood draw lab or urgent care to be used on you or your children. The lab or urgent care should work with Quest Diagnostics to ensure timely daily pick-ups of blood samples. The results will then be emailed to you.
If you/your child tests positive for two or more autoantibodies, you’ll receive a phone call within four to six weeks.
My experience with TrialNet:
The folks at TrialNet are a wonderful, small, determined team. Very easy to communicate with via phone and email, they are there to answer any questions or concerns you may have. My only gripe with the TrialNet method of testing is that the at-home test-kit is really tedious (for us, impossible) with really small children.
Instead, I had to bear-hug my terrified (both when they were 3 years old) children at an urgent care office.
Yes, we succeeded and survived, but it was no picnic. There were a lot of tears and it was just downright stressful. I’m glad we did it. But it’s very stressful for young children—which is the age when this testing is most important!
Paving the way to make at-home testing easier, this testing process is a game-changer because it’s a much simpler process—especially for young children.
Cost: It’s $55 + tax per test-kit. There is also an opt-in subsidy option for those who need financial assistance, reducing the price to $10 + tax (you’ll see this option during the ordering process).
The best part? Anybody of any age can order a test—and you can take the test again in the future. There are no limitations.
My experience with T1Detect:
Yes, it’s still a little scary for young children to prick their fingers. Yes, there were some tears, but it was much easier. I documented our first time with T1Detect here. I tried using toys as a potential reward for cooperating, but I don’t recommend this approach—my youngest eventually just told me she didn’t want any new toys for the price of pricking her finger. Instead, I was just firm and clear that this was an important part of our health, it would only hurt for a moment, and that I needed them to be brave.
Following the directions in the kit, you simply mail it back to Enable Biosciences via FedEx with the prepaid envelope. You’ll get your results within about four to six weeks. If you/your child tests positive for two or more autoantibodies, someone from JDRF will reach out to you. Having been one of the first people to use this testing kit, I know the JDRF has further improved the communication process around your family’s results. This was a very relatively easy process, and I plan to repeat the test once a year for a few more years.
What if your child does test positive for two or more autoantibodies?
If the test results find two or more autoantibodies related to type 1 diabetes, you may qualify to be enrolled in one of the ongoing trials working to prevent or delay the full onset of the disease.
Even if you don’t enroll in one of these clinical trials, you now have tremendously powerful knowledge at your fingertips.
Knowing that you or your child is in the earliest stages of developing T1D means you can monitor blood sugar levels closely as the disease progresses over the course of months or years. It means you can prevent weeks of life-threatening diabetic ketoacidosis (DKA) before a diagnosis by starting insulin therapy when it’s appropriate.
The Bottom Line…
Screening for T1D is scary—I get it. I will continue to hope that my children never develop this disease.
But the reality is: they just might.
Decades of research and science have given us the ability to keep our children safer, and I’m going to use that research to its fullest. I hope you consider doing so, too.