T1d the III

tnet

It was a pretty long run. The big brother had been TrialNet-ly *not* having diabetes for long enough that the little brother has had time to outgrow all of the clothing worn by the big brother in this photo.

This isn’t so bad, but I’m feeling morose. Joslin called. It was our TrialNet doctor. He said something like, you remember Jack had an abnormal result, and as you know, we had him repeat the test, and that result was also abnormal, and in fact the results both times were high enough (253, 256) to meet the ADA criteria for diagnosis with Type 1 diabetes. 

That part was not a surprise. This part was more new:

This is different from your diagnosis, in that things usually happen much faster with kids, I mean it’s not an emergency, but I recommend you get him in to see a pediatric endocrinologist, definitely within, say, the next few weeks. Do you have someone you could see?

Our endo is moving away at the end of June. (Wahhhh.) So maybe Jack can slide in to see her once before she leaves. Even though he’ll be immediately passed along to a new endo, I’m hoping Dream Endo will give him a dazzling, witty introduction to T1d, and tell him some concrete thing like maybe…

  • Get a Dexcom and watch how what you eat affects your blood glucose, then avoid foods that give you highs or rebound lows.
  • Test your fasting BG a few times a week and then call for an insulin prescription when it’s over 120 mg/dL more often than not.
  • Take insulin starting now to preserve beta cell function. Here is a syringe. Here is an orange.
  • Since you’re in the middle of the growth spurt, your blood sugar is higher than usual. Take this insulin for a week, and then your diabetes will go away until after college or maybe forever.

But I think it is more likely the suggestion will be something like…

  • Just eat/do what you enjoy. You’ll have to deal with it all soon enough, and there is no proof that you can delay things anyway.
  • What are you even doing here, in my office? You are fine. Go home.

Whatever the suggestion is, I’ll take it. I just don’t want the suggestion to be follow your gut. There is no gut. My gut is done, dried up like the gut of a roadkill squirrel.

One bright spot: now that Jack’s diagnosed, the big secret can be revealed. Drug or placebo? We’d all bet on drug, since he had the weird side effects of teplizumab, including the skin peeling off of the palms of his hands, and also there was the (not small) matter of a return to normal blood glucose during OGTTs for over two years. But maybe there will be other secrets revealed; maybe his A1c’s or c-peptides will be interesting, or we will find out we’ve won six million dollars.

The morose part: It was fun to be in a research study when my child was getting a special thing that not everyone could have and he was super-lucky. Now we’re just bleh, bruised banana, grumblelumps with no secret passageways or fancy shortcuts in sight.

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10 responses to “T1d the III

  1. 1. (Sad-face emoticon)

    2. Thank you for your valuable contribution to science.

    Liked by 1 person

  2. I’m sorry Katy. This sucks.

    Liked by 1 person

  3. Anonymous

    I am so sorry ((hugs))

    Liked by 1 person

  4. Polina

    This post is worth a million dislike buttons on Facebook. Maybe more.

    Liked by 1 person

  5. So sorry… Sending you big hugs.

    Liked by 1 person

  6. Your son and family are a new breed of T1’s where you have to/get to watch it develop. At least you know the drill so he will be able to escape a DKA diagnosis. I would probably touch base with the current wonderful endo so that he becomes an established patient of the practice. Hope the replacement endo is just as wonderful. Sending hugs to Rhode Island:-)

    Liked by 1 person

  7. It is actually not morose at all. I completely understand how it feels to like something really good might come of something not so good. When I was Dx’d my mom said son, I envy you, you will live to see the end of this disease. My mom and her sister were both type 1’s. That has not happened in 42 years, but I often think you know it is a blessing. I wish you and your family all the blessings.

    I referred your blog to the TUDiabetes blog page for the week of May 23, 2016.

    Liked by 2 people

  8. I’m with Reyna. It sucks. I’m sorry. Not one of us ever wishes this disease on anyone.

    Like

  9. Sorry to hear this, Katy. He’s in good hands (SuperMom’s and Superstar Endo’s), but T1D is still a #JerkFace and I’m sending this empathy card: http://emilymcdowell.com/collections/empathy-cards/products/what-doesn-t-kill-you-empathy-card

    We absolutely must have a “welcome to the club” GF chocolate cake eating party sometime soon to celebrate our newest member in style.

    Liked by 1 person

  10. g

    This calls for a “book club” meeting soon! xoxoxoxo

    Like

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