Tutti Frutti

 

blindfold

Last week Alicia shared a picture of herself under this sign and I half-expected she would still be standing there. But the only other test subject on the clip board was there for something called Fish Oil, PM

Yesterday was TrialNet day. For Jack’s Anti-CD3/teplizumab thing.

This will make no sense if you aren’t a d-person and might not make sense if you are. It’s written for an audience of an imaginary, time-traveling me considering whether or not to participate in a drug trial. (Participate here = signing up a child.)

Yesterday, Jack had a Dexcom on. Not for science, for personal use. Earlier in the week he’d been on and off feeling kind of sick/tired and sometimes crazy hungry, and we wanted to see if this could be related to BG. It kind of was, but not in an actionable way. Also we were curious what would happen to him post-OGTT, i.e. would he crash like his ancestor? (Requires stat visit to Shake Shack.)

During the test I was watching the mayo and mustard and the movies How to Eat Fried Worms and The Muppets.

Fasting 94 mg/dL. Nice.

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Drink at 9:15.

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An hour after the drink, BG squeaked past 200. That seemed reasonable, especially since it wasn’t double ups.

An hour after that, the test was about to end and I thought there’s still time. He’s probably crashing really fast and will be under 200 on the meter and the Dexcom is just having a normal lag. 

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And then even at the very end he was still 240+ and the Joslin meter said so too and I thought maybe the Dexcom is having a normal lag and Joslin’s meter is broken.

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By this point we were gathering up our things to leave.

So. 2-hour pp OGTT result >200 mg/dL. For someone with autoantibodies, that’s Type 1 diabetes. If you are >200 mg/dL twice in a row, that’s it. You are a diabetes people. The next step for us is to get called back for a repeat OGTT. Pfffft.

This is not my bag. I’m no Tina. I’m no Meri. I’m no Laura, although I might like to be. This is dumb. Jack is just so, so different from his brother, in terms of demeanor, body type, idiosyncrasies. How could they have something like this in common? It’s ridiculous. My surprise is ridiculous too, since there have been ample clues, vibes, and lab values pointing to this for years.

And then, while we were at lunch, I looked at the past 24 hours in blood glucose, mostly to console myself that he’d had a fantastic fasting BG of 94, and it had come after a long, straight line. From the three hour view I pressed back to six, and from six to twel—uh.

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That midnight though.

Maybe he’d had a vivid, prescient dream of the OGTT?

Clarify these dangles:

  • Will he be >200 mg/dL at the follow-up OGTT? Proly. We’ll see. No one knows.
  • Would you recommend being in a drug trial like this to a friend? Yes. You have a 50% chance buying your kid some non-d time and a 100% chance of being science.
  • Shouldn’t he start taking insulin as soon as possible to preserve his beta cells/prolong the honeymoon? I don’t think so, because of the risk of lows. I mean I don’t think any doctor would prescribe that yet.
  • Shouldn’t he start eating a low-ish carb diet so he won’t be high? I think so. Maybe.
  • No, you should let him eat whatever he wants now, since he’ll be a food math person soon enough, right? Probably. Maybe. I don’t know. This is going to be hard.
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14 responses to “Tutti Frutti

  1. Ohh, I’m sorry. I’m not a parent of a type 1, simply one myself for 40 years now. I know it’s a huge benefit to have all the technology we do now, and I love it personally. However, I think it places a greater burden on parents to ‘get it right’, and it must be incredibly stressful.

    I’m so impressed with how well you handle it, and love your sense of humor and thoughtfulness! Best wishes on this next phase of your journey with the big D.

    Liked by 1 person

  2. Shoot! Shoot! Shoot!

    Liked by 1 person

  3. Oh, Katy… I’m sorry. That really stinks. 😦

    Liked by 1 person

  4. Lisa

    Ugh. That stinks. Wish there was a magic 8 ball that led you in a surefire right direction.

    Liked by 1 person

  5. Although you knew it was coming, still kind of crappy that it’s here.

    Liked by 1 person

  6. On behalf of all our children and children’s children thank you for participating in Trialnet. It is the most important science we can do today if our children are known to have a family connection to diabetes. I am sorry your son experienced this and i agree with your assessments at the end.

    I referred your blog to the TUDiabetes web page for the week of April 18, 2016.

    Like

  7. Mary Margaret

    Behind you 100%. You got this, you are strong.

    Liked by 1 person

  8. What im going to say is absolutely horrible and I don’t suggest you follow a word of it, but I’m going to be absolutely honest here: if it were my child I’d probably bury my head in the sand and pretend it wasn’t really happening until such a point that the doctors told me I couldn’t ignore it anymore.

    Could a person live on the borderline for ten, twenty years before T1D takes over? I don’t know — it’s rather uncommon to pre-diagnose before diagnosis so I doubt there’s conclusive evidence one way or the other.

    And finally (and this is the part I DO hope you follow); you’re right in saying that you’re not not Meri and you’re not Tina. Be Katy. Always be Katy.

    Liked by 2 people

  9. shannon

    well, shit

    Liked by 1 person

  10. Oh no, I’m so sorry. You were brave to even find this out. So many people would rather hide their heads in the sand and wait for it instead of worry especially if they can’t do anything about it. I couldn’t disagree more. One of these treatments just may pan out. And some of the islet transplant treatments might be promising, and what if a certain treatment works better in someone with at least some beta cell function left? Preserve that shit. Sounds like you have a tough choice re diet and instituting changes now. But at least you can do what you can to lessen risk of further autoimmune attack, ditch gluten, up the Vit D…. But you guys already do, huh? Anyhow, bla, bla, not what I mean, what I mean is sorry, friend. Diabetes seems a strange fit on your other child, doesn’t it? Must be surreal.
    Man, some day there will be a cut off- people diagnosed before a certain time will have diabetes forever, and those diagnosed later, after one of these things finally works for really, will not. I will be so sad for our little diabetes-forever guys. Oh my god, what if you have one of each?
    They are so lucky to have you.

    Like

  11. Laura G

    Oh, wow, I’m so sorry to hear this news.
    But–he has an incredible, smart, supportive family to take care of him.
    I think the way you handle all this is balanced and wise. You’ll find a way to preserve not only some of your kid’s beta cell function but his good general health and his sanity and happiness. Like everyone’s saying…they’re so lucky to have you.

    Like

  12. I know I commented on Facebook but I’m compelled to comment here as well. UGH. NO. So sorry! You got this and we have your back. And also fuuuuuuck this!

    Like

  13. Oh no! And you’ll feel guilty no matter what you do re: food. It’s an impossible choice. May the artificial pancreas come on the market before he has to learn how many carbs there are in grapes.

    I just filled out the paperwork for my son for TrialNet a few days ago. Here goes…

    Like

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