On the Horns of a Dilema

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Originally uploaded by amberthyme.

I recently contacted Stanford University to become a participant in the TrialNet Natural History Study. In this study, if you have a family member with type 1 diabetes they draw some blood and test to see if you have any markers that indicate that you might develop type 1 diabetes. This study is open to parents, siblings, cousins, and more. If you're interested just follow the link.

This study to me is a no-brainer. Give some blood. Give more blood if markers are found. Hey if Brenna can get poked EVERY DAY I can do it when needed to allow scientists to learn more about diabetes.
So where does the dilema come in? If I want to have Therin participate he has to sign an assent form. He is 7 years old and must legally agree to a blood draw and even if he signs the paper he can back out at any time. I can't force his participation in a blood draw when it is medically necessary. If by some bizarre chance he developed diabetes I'd have to hold him down for his A1c anyway (they still do blood draws rather than finger pokes at my daughter's doctor office). But even THAT isn't what's bugging me. Therin gets to choose whether he helps but if I were to enroll Rowan, because he's 5, all I have to do is sign the consent form and force him to do it. How fair is that? Not at all. I think he's more likely to follow through than Therin but should I ask it of him? Should I demand it of both?

But, that is only the first horn. The second horn is should I enroll Brenna. She fits the criteria to join some studies regarding the testing of CGMS (continuous glucose monitoring system). One of the studies seems fairly non-invasive. Keep the CGMS device attached and download her pump information, CGMS information, and send in her daily food log (that is something we've been doing already). But to join this study she'd either have to have a CGMS device already OR I could enroll her in a study that would give her one as part of that study. The other study basically would hook her up to an IV and induce hypoglycemia. It is in rigidly controlled circumstances and once she got to 60 they would give her a glucose tab or hummingbird juice in her IV (my wording not theirs). She'd end up having to go do this twice, maybe more, if I'm reading this right. Now, Brenna doesn't always present with "symptoms" when she is going low. Sometimes she's really cranky. Sometimes she asks for peanutbutter or a glucose tab. She really likes glucose tabs and will ask for them at any given time. I'd say that she's low about half the time she asks though. Do I just miss the signs when I'm busy? I think it would be facinating to find out what is going on and see what happens in a controlled enviornment. But . . .experimenting on my baby girl seems so callous. Putting her through that kind of stress on purpose seems mean. But. . . if I can get more information in a controlled enviornment then I will be better able to help her if a severe hypo develops. Maybe? I don't really know about that one. When in a stressful scary situation sometimes information flies right out of the brain. Chances are that she'll have icky stressful diabetes related situations at some point in her life and will have to deal with them. But . . .if we could be a part of the solution . . . part of the group that says that CGMS is not only helpful but a necessity for people with diabetes of all ages especially the youngest when their numbers are all over the place and you can take one look and know if she's going up or coming down. To have access to that device for just a few weeks to keep an eye on trends and figure out what's going on with some of her weird spikes.

So, my plan of action. Have Al read through the Research Consent Form and get his opinion. If he doesn't think it would be torture for Brenna then we inform her Endo & diabetes nurse of our plans and see what they say. Then, if all is well, contact Stanford and see if the studies are still happening and go from there. As for the boys? I thought I'd tell them that my husband and I will participate but we're not sure about our two sons..