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.

Thanks.

Advertisements

Posted on June 6, 2013, in Diabetes, Personal, Type 1 and tagged . Bookmark the permalink. 16 Comments.

  1. My non-D son and I both tested positive for one of Trialnet’s five (is it five?) antibodies and so are part of the follow-up group. I guess people with one of the five (or however many) have a 1 in 10 chance of developing T1D in the next few (two?) years. Neither of us feels more worried about it than we did before, even though our chances are much higher than we ever realized.

    I don’t even think I’d really be sad if either of us developed it. I think I would feel just kind of fatalistic and capable.

    I’d like as much information as possible, and the benefit to Science and the Community at Large is the icing.

    We also get a free night in a hotel in Boston in July, (in order to have fasting glucose blood drawn) so it’s really win win win. Win win win until suddenly it’s not.

    Like

    • Wow, I’m glad to hear that the results didn’t make you feel any more worried. I’m not sure that hearing of a 10% chance in the next two years would make me feel any better … unless it meant that they were “off the hook” after the two years were up (which it doesn’t). But I like your attitude nonetheless – and the benefit to the scientific/research community is just evidence that this thing is bigger than just me.

      Like

  2. My wife and I don’t have kids at this point, but we have discussed this at length and decided that in that hypothetical situation, for us, participating “to know” isn’t what we’d be in it for. We would be in it for the scientific future-benefit. If a child’s going to be dx’d, there’s nothing we can do. But someday, that might not be the case and by knowing what we learn from this kind of research, something could be done. Not about us, but about the future generations. But of course, it’s a family decision and there’s really no wrong answer. Very emotional topic, especially for those of us with this lingering fear. Thanks for sharing and discussing this, Scott.

    Like

    • Yes, that’s the whole point of trials– for scientific future-benefit. And a simple blood-draw is quick and easy… it’s just my concern about knowing the results. Maybe I’d do it for the research value and never ask to know the results. It’s a tough call.

      Like

  3. I asked my younger brother and sister if they would participate a year ago (you have to be under 45 to participate), and their answer was a flat no. Since I don’t have kids, that ended the discussion.

    I agree with Mike that there’s no wrong answer. And it’s okay to have one answer today and a different answer in a week. Gotta do what’s right for you. When it’s right for you.

    Like

  4. A flat “no” — sounds like it was pretty definitive. I wonder what the reasonings were. Thanks for the insight, Stephen. Good to know someone else didn’t want to know.

    Like

  5. I have 9 yr old fraternal twin girls. One has diabetes, the other does not. I’ve been on the fence as to whether is should have the non-D one tested for the antibodies. I do worry occasionally that she has diabetes when she’s gotten sick and have tested her blood sugar to check.
    I think one of the reasons I don’t want to have her tested for the antibodies is because it’s not my body. I don’t want to put the burden of knowing on a 9 yr old. For me, I’d like to do it for the scientific reasons, but it’s not my body so it’s not my decision to make and 9 yrs old is too young to decide. Maybe when she’s older she’ll get tested but for now, I’ll watch her closely for any symptoms.

    Like

    • Thank you. One thing that I somewhat selfishly didn’t consider (other than the physical discomfort of the blood-draw) is whether my sons would even WANT to have this done, and whether they’d WANT to know if this is something their future might include. The 6-year-old is too young to make that decision, and the 19-month old is most definitely too young as well.

      I’m thinking more and more of doing the test but declining receipt of the results – permitting it just for the scientific value. But, I suppose the request to perform follow-up tests would give away the result anyway.

      Like

  6. I hear you! I wish there was someone in the DOC that could just answer this question for you, as I know it is far from an easy one. But this is one of those things that in the end, is 100% up to you…mostly because everyone is different. I’ve had friends test negative, and then had a diagnosis shortly thereafter. I’ve had friends test positive, and then worry for years, only to have nothing come to fruition. You hit the nail on the head with damned if you do, and damned if you don’t. Having things up in the air can be disabling for some people. Especially when the up in the air has to do with the one person you adore more than anything in this world. But there is the scientific side of it all…so weigh your options and then find a way to make peace with your decision. You’ll make the right one for your family. I promise. It all works itself out in the wash.

    Like

    • Thanks for your input, Meri! And I hope I didn’t misspeak when referring to that podcast. Knowing these things are far from definitive (or maybe you’ve got thousands upon thousands of friends who you’ve surveyed and have done the test) makes me feel a little better about it – and the need for the scientific research it will be used to benefit.

      Maybe I should stop worrying, and just prepare to deal with whatever life may or may not throw at me. Keep carrying the umbrella even though the dark cloud which could form overhead may never produce rain. I sincerely hope you weren’t bothered by the thoughts I expressed at the top of the post.

      Like

  7. Our whole family was tested the first summer we attended the CWD conference. That was when we first discovered our oldest son has a very serious needle phobia. We all had negative results and we have never been tested again. For now we are just praying that our oldest son doesnt get T1 … Lord knows he will never be able to deal with all the needles!

    Like

    • Fortunately, getting stuck by an insulin needle hurts less than getting stuck by a pine needle. I think the underlying message is that you (and me, and everyone) can deal with whatever comes our way. The question is if we want to know ahead of time.

      Like

  8. Absolutely not bothered at all! I’m appreciative of your thoughtful post. It is one that needed to be put out there. It isn’t an easy decision. I feel for you!

    Like

  9. Your post hits the nail on the head of the emotions that I and many others go through. I have had T1D for 31 years, my younger brother for 27. To say the least, there is something going on in my family related to diabetes risk. I have two daughters (11 and 13) that I hope will not be diagnosed, but that fear will probably never go away.

    My girls have been in TrialNet for 4 years, and so far, no antibodies. They were just screened this week for their annual visit (6 months late as I procrastinate addressing the emotions you describe). I would be lying if I said I was not on pins and needles waiting for the results. Yet, positive antibodies happen less than 5% of the time, so the possibility is still small. How do researchers know that the risk is 5% of family members? Data from TrialNet.

    Myself and many others have been told when diagnosed that a cure would come in 10 years. Though there are exciting things happening in diabetes research, a cure is still a ways off. Why? Research participation. It is estimated that TrialNet has screened less than 4% of family members of those with T1D. How do you begin to find a way to prevent/stop diabetes if you don’t know who is at risk? Every result (whether positive or negative) from every participant in TrialNet is telling the researchers something. And then researchers create new studies based on their findings.

    A big part of curing those that have T1D is knowing how to keep it from returning. For example, if my daughters have antibodies, they may be eligible for the Oral Insulin study which is being studied to see if it stops or slows the progression of T1D. If I have options that may stop diabetes, why would I not consider it? What if it works? What if it doesn’t work but gets them through college without T1D? What if it makes their T1D easier to control in the long run? In the future, if they find a way to cure me, maybe a pill like this can keep it from coming back. Or, it may do nothing, which still tells researchers something.

    Here’s the kicker, it takes 20,000 people to be screened in TrialNet to find 50 people to participate in the Oral Insulin Study. And then those 50 participants have to be monitored for years to see if it worked. It is a long process.

    Participating in research is much bigger than me, you, our emotions, or the potential 15 seconds of discomfort when the blood is drawn. It is one way that we can play a role in finding a cure. Though the fear of my children getting T1D will probably never really go away, I am not accomplishing anything by watching and waiting on the sidelines. I know that my family’s participation is for the greater good. We feel empowered by getting involved in research, to determine risk, and to find a way to stop T1D, maybe before it starts. My girls participate because they want a cure for diabetes. Are they scared that they may get it? Sure. But they also know the bigger picture. In the end, the decision is still up to us.

    Full disclosure, I work for a Diabetes Center that conducts TrialNet screenings and prevention research. My experience above is both personal and something that I deal with every day with 100s of parents and others affected by T1D.

    Like

  10. I have conflicting thoughts about this as well, Scott. Thanks for spurring on a discussion about it.

    Like

  1. Pingback: It’s not fair | Rolling in the D

Discuss.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s