Thursday, June 6, 2013

Little Ticking Time Bombs - LADA, Addison's, Vitamin D, and Trial Net

The boys and I had blood drawn for TrialNet last week.  We're supposed to hear something back from them in 4 to 6 weeks.  I'm not the least bit concerned about myself.  I think it's pretty obvious that the genes for the T1D came from Michael's side, although I've obviously contributed my own share of autoimmune woes, with my arthritis.

I'm trying to decide how I even feel about the results of the TrialNet autoantibodies tests.  Of course the real bottom line is that we participated in the test because it might help uncover means to prevention or a cure.  It's nice that we also get personal information from it, but that was not my motivation.  Well… maybe a little.

I'm worried about the boys' results.  I don't want them to face this, and yet, there's this funny part of me that doesn't want to admit that I don't want them to have type 1, because to admit that would be to admit that there's "something wrong" with Eleanor.  I know it's all complicated and twisted up with my feelings of fairness.  It's the same way I feel when someone sees our diabetes management and says, "Oh my gosh! I could never do that!"

Yes you could.  Yes. You. Could.  And you would.  You just don't have to, and it's okay to be glad you don't have to, but maybe you should say that instead.    "Oh my gosh I'm so glad it's you and not me!" But that sounds selfish so you don't want to say it, but that's what you really mean, isn't it?  I don't blame you.

Eleanor's First Birthday at the Hospital
My husband was diagnosed with diabetes 14 years ago.  They said he was Type 2, because he was 34 years old at the time.  But they admitted he was one of the "weird ones."  7 years later he was also diagnosed with Addison's Disease.  Eleanor was a year old, she celebrated her first birthday in the hospital lobby on his floor.  The boys were 7 and 3.  He was in the hospital 10 days, and I was losing my mind because they could not figure out what was wrong with him.  I had actually come up with the Addison's diagnosis the very first night he checked himself into the ER.  I based my conclusion on, among other things, his low sodium level and that in recent years he had developed a nickel sized cafe au lait mark on his face up near is hairline on his cheek bone.  I can't remember every little detail I read, but when I read the symptoms, they all fit.  (I actually diagnosed his diabetes too, 14 years ago.  I started reading up on symptoms and I said, "You have diabetes!" before he ever went to the doctor - I wish I had some other thing to feel smug and vindicated about!)

It took me 10 days to work up the frustration level to tell the hospitalist how he needed to be tested.  I remember that day.  I must have left the kids with my dad or someone, because it was just Michael and me in his room when the hospitalist came in.  That was before the days of mobile devices,  so I had pages and pages of articles and research studies printed out from my research.

I was driven to the breaking point with spinning our wheels in the hospital and I told the hospitalist.  "These are the tests we need to run."  I pointed angrily at my sheaf of papers.  I had a catch in my voice and my adrenaline was pumping like crazy because I was sure I was in for a fight.
Eleanor, well protected from the Sun in Grand Cayman
I think he has Addison's Disease, and this is why… " I carefully made my case, "We need to get an endocrinologist in here."

When she said, "That all sounds very reasonable," and wrote the order, I didn't know what to do with my fight.  I felt like a deflated balloon expelling hot air. When the endocrinologist showed up he was a bit smug.  He said, "I'm kind of proud!  This is my first time to diagnose Addison's Disease."

To which my husband replied by pointing my way, "She's the one who diagnosed it." The endocrinologist reluctantly acknowledged that was the case.

The next part of the story is Eleanor's story.  She was diagnosed with Type 1 on March 10, 2013.

And here's what pisses me off.  AFTER she was diagnosed with T1D, I started really reading and learning, and getting myself educated, and I learned that the combination of Addison's Disease and Type 1 Diabetes is probably a form of Polyendocrine Syndrome, and that means that our kids have a 1 in 2 chance of developing Type 1 Diabetes.  That's really high.  And I didn't know it.  According to The Joslin Diabetes Center:


  • About 1 in 7 people with type 1 has a condition known as type 2 polyglandular autoimmune syndrome. In addition to type 1 diabetes, these people have thyroid disease, malfunctioning adrenal glands and sometimes other immune disorders. For those with this syndrome, the child's risk of having the syndrome, including type 1 diabetes, is 1 in 2, according to the American Diabetes Association (ADA).


No one told me my kids were sitting here like ticking time bombs.  I didn't know.

We always took great care to avoid sunburn
Unlike my diagnosis of Michael, I did not suspect diabetes when I took Eleanor in to urgent care that Sunday afternoon.  In fact, I even told the doctor that I was worried it was leukemia.  At least I made it clear that I was VERY concerned.  I knew full well this was not just  a bug.  I still have the text messages saved on my phone that I was sending to my mommy friends that day.  I argued with them that she wasn't acting like she was because she was still getting over the virus she'd had the weekend before.  I just knew. Funny how that intuition works so well when it comes to our babies.  I am thankful for that intuition.

But why didn't someone tell me?

this is the only kind of swimsuit
my kids have ever worn
And you know what else?  No one told me that vitamin D deficiency can increase the risk of developing Type 1.  Ironically, I was so anxious about sunburn and skin cancer that I exercised more than typical care in keeping my kids out of the sun.  They all wear wide brimmed hats.  They all wear long sleeved SPF factor rashguard style swimsuits, because I had a third degree sunburn in the mountains as a two year old, so I was more cautious about sun exposure than most of the mothers I know.  They'd get slathered with sunscreen every single time we were out in it.  Was my concern excessive?  Did my fear of the sun contribute to Eleanor's developing T1D?  Maybe.

Just a couple of weeks ago, my rheumatologist told me my own vitamin D levels were deficient and she put me on a prescription strength supplement.  There's a pretty good chance that Eleanor was also deficient.  Michael was diagnosed with his diabetes about 2 years after moving to the Pacific Northwest where there is a lot less sunlight.  The closer to the equator you get, the less common are diagnoses of Type 1 diabetes.  More cases are diagnosed in the winter months than in the spring and summer. Hmmmm… interesting.

They are well programed.  They always ask for sunscreen.
From the Mayo Clinic:Geography. The incidence of type 1 diabetes tends to increase as you travel away from the equator. People living in Finland and Sardinia have the highest incidence of type 1 diabetes — about two to three times higher than rates in the United States and 400 times that of people living in Venezuela.

and now she is excited to get
her first Omnipod shipment
If I had known that our kids had a 1 in 2 chance of developing type 1 diabetes, I would have watched more closely, and I would have read more about it, but I didn't know.  If I had read more about it, I might have been a little more careful to get them some sun exposure each day before we put on the sunscreen, but I didn't know.  If I had known that having Michael for a dad meant they were eligible to participate in TrialNet, we would have been doing that too.  But I didn't know.

I've read that patients who present at diagnosis with DKA (diabetic ketoacidosis) have a higher rate of complications than patients who are not in DKA at diagnosis.  Is that cause, effect or correlation?  I don't know,  Eleanor was in moderate DKA at diagnosis.  I can't help but wonder if we'd known her risk of T1D was so high we might have caught it sooner and she might NOT have presented in DKA, in which case, maybe her risk of complications wouldn't now be higher.  But I didn't know.

Now the boys are taking Vitamin D supplements,  I'm trying to make sure they all get a little sun, but not too much, and we are waiting on the results of those TrialNet tests. It's already too late for Eleanor.


6 comments:

  1. Oh, love, you also don't know if some sun exposure and/or vitamin D supplements would have made *any* difference for Eleanor! Please, please don't blame yourself, or beat yourself up in any way. The amount of research you do, the amount of self-education you take upon yourself, your proactive planning for the best course of treatments for your family are above and beyond what I've ever seen or heard of any parent doing. In Michael or Eleanor's situations, I would not have known as much, or done as well as you have. They're lucky to have you. You are an amazing wife, mother, friend and person. You do your absolute best, and your best efforts yield results others can't attain.


    Love you, (((Julie)))

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  2. I appreciate your support, but I think you are confusing what I have said here as self blame. I don't think I've said that at all. I hope you can see the difference between lamenting that I did not have the information, with blaming myself. I don't blame myself at all. I don't think my post reflects guilt. It was not meant to.

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  3. Our 23andme testing showed Owen at about 650% greater risk of developing type I. I think I'll give him vitamin-D. Have to go to Costco and pick-up some.

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    Replies
    1. That's a pretty high risk. I figured, the vitamin D is a low cost investment, and while there is some risk of over dose, as long as you are mindful, that shouldn't be a problem. What's the harm, right?

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