Damned if I do, damned if I don’t — Contemplating TrialNet
About a month ago, I put out a call to other D-parents who may also confess to living vicariously though their non-D kids. A year ago, I confessed how scared I was of passing down the diabetes gene to my kids (I know … there is no diabetes gene … that we know of).
What’s a parent to do? Here’s another call out to D-parents to ask for your suggestions.
I could live with the understanding that my kids are more “at risk” (God, how I hate those words) for diabetes than their friends. I could hope and wish that they don’t get it, but that would be like building an ornate sandcastle ahead of a giant wave — a pointless waste of effort.
I could bury my head in the sand, ashamed that I worry about a mere possibility, while so many other parents handle the reality of having kids with diabetes — and they do it with an abundance of grace and elegance and patience. I could be a hypocrite, preaching that “it’s only diabetes and it’s not that bad…”, while quietly whispering to myself …as long as it doesn’t happen to my own kids.
I feel ashamed and embarrassed and hypocritical by writing those thoughts I just enunciated in the last paragraph.
But at the same time, I’m going to keep on checking my kids’ blood sugars at anything that even remotely resembles a symptom. If one of my kids feels sluggish and thirsty, he’s getting his finger stabbed. If he’s losing weight, he’s going to bleed a little. If the diapers are soaking wet, he’s getting checked.
My insurance company pays for test strips for me and me only – not for my family. I don’t care. I won’t put a possible diagnosis in the hands of a doctor. With all the screaming and yelling that I’ve done about how pediatricians should be more proactive in identifying diabetes in their patients, I’ll be damned if I’ll wait for a doctor to tell me that my kid is throwing up because he’s going into DKA. If it’s going to happen, I’ll find out myself.
Which brings me to the end of this long prelude and on to the regular topic of this post. The Type 1 Diabetes TrialNet “Pathways to Prevention” screening. If you’re not familiar with it, it’s a clinical trial where they check the blood of immediate family members of people with Type 1 (children, parents, siblings) and look for certain antibodies that could indicate the person is more “at risk” (there’s that term again). Of course, the presence or absence of those antibodies don’t guarantee whether the person is destined to a life using synthetic insulin, but it is believed to indicate susceptibility. That’s part of what the “trial” part is all about.
If the person being tested is shown to have those antibodies, than they can be invited to participate in further tests. Those further tests lead to the “prevention” part of the study.
My wife and I discussed this a bit over the weekend — about whether or not we should have our two kids tested. About whether we should subject the 19-month-old to having blood drawn from his vein. About whether we WANT to know the chances of them getting diabetes in the future. If the absence of the antibodies will make us feel better. If the presence will make us feel worse.
I have flashbacks to a Just Talking Podcast featuring Meri of Our Diabetic Life. Somewhere in the interview (it’s an hour long, and I can’t find it right now) she discusses a conversation she had with her non-D son (three have diabetes, one does not) where she asked if he wanted to participate in TrialNet and the response was in the negative. The words “ticking time bomb” were used, and the resonate in my mind as I think about it as well. (I’m pretty sure my memory’s right on that one, but I apologize if they’re not).
If it’s destined to happen, it’s destined to happen. But living each day with test results that instill the belief that it will happen, but not knowing exactly when, has got to be incredibly discouraging. It’s a reason to be pessimistic rather than optimistic, and it’s no way to enjoy life. So, despite the possible reassurance it could give, the possibility of the less-common test result is reason enough not to participate at all.
But on the flip side of the coin, it’s a clinical trial. It’s for scientific research that could ultimately prevent future generations from getting Type 1 diabetes. If I have one wish in this world, that would be it. (And, it costs nothing to participate). I’m all for researching anything and everything relating to Type 1 that shows some promise. (No, I won’t participate in a trial of the subcutaneous cinnamon-infusion pump.) How could I say no?
There’s that feeling again, the one that I mentioned before. Of being ashamed (of whichever decision we make). Of being a hypocrite. Of being afraid of something that I know I’ll be able to do, because I’ve been doing this for thirty-two years.
I don’t know what I’ll do. My wife and I need to discuss it some more.
But if you’ve participated in this trial, or if you have elected not to, (or if you’re indecisive like me), I’d love to know what you’re thinking. Of all the free and open diabetes discussions I’ve had with others in the DOC, this is one that has not yet taken place. And I think it needs to.
Please leave your thoughts in the comments below.