I Love Today!

I had butterflies in my stomach all morning.  Scary, nervous butterflies.  C’s endo apt was today.  We’re supposed to get the results of his Thyroid Antibody test.  His thyroid was enlarged and he had a few other symptoms.  Not really a big deal in the long run, but still.  He’s tired of being diagnosed.  He’s so great at keeping a totally normal attitude despite the fact that he can’t eat most of the foods (gluten) that people eat around him, the fact that he has to prick his finger all day, the fact that he’s attached to a machine that delivers his insulin instead of his pancreas doing it.  It just rolls off his back like nothing.  But when he heard the idea of one more diagnosis when his life was just getting back to normal, he got pretty upset.  The idea of having to take pills scared him as much as the thought of needles did when he got the news about diabetes.  It was heart breaking.  Today we went to the Dr. and I was prepared to be as positive and light-hearted as possible to ease his pain when they broke the news.  Only they didn’t.  His levels were perfectly normal.  We cheered of course.  What a crazy relief!!
Then, onto the next order of business.  The last 3 nights C’s had some unexplainable high blood sugars.  I changed his infusion site and they got worse.  But… in the daytime they’ve been great.  Until today.  He came home from school about 9:30am with small ketones and BG 346.  I did not give a correction dose.  Dr. likes us to correct only at meals and bedtime and there would be no getting away with it even if I tried since we were going to see her.  Except and hour and a half later, while in the waiting room, he drops to 65.  What the?  Ok, so apparently the site is ok and the insulin’s working still?  Whatever, I’m still confused, but she was really excited to see the rest of his numbers doing so well!  She decided to wait before making any basal changes this time.  We’re just going to try a new vial of insulin.
Here’s the icing on the cake.  His A1C was 7.4.  It was 8.2 in November.  Before that, they did it in the hospital and didn’t bother tellling me what it was.  I wouldn’t have known what it meant at that point anyways…  BUT, I’m so excited because he’s been on the pump for a month and it’s changed everything.  I know that the majority of what brought it down happened in this last month.  Just imagine how much more improvement we’ll see on his next one!



When C was 15-16 months old, he’d had this unusual diarrhea for about 2 months.  It was orangey colored and very mucousy (sp?).  I nursed him until 14 months.  It was right after I stopped nursing that it started.  I took him to the doctor and they thought it must be parasitic.  They did a stool sample and there were no parasites.  They then decided it was probably an allergy to milk since he had just started on cow’s milk.  Removed the milk and it eventually got better.  They wanted me to reintroduce milk, but he was fine on soy milk and rice milk so I left it alone.  Until he was very underweight.  We had moved back to California and his new doctors were concerned with his weight and wanted him to start trying milk.  I added it back in his diet and there were no problems.  He was usually floating around the 10th percentile for weight and 50th – 75th for height (birth was about 50th/75th).  When he was about 4, his weight dropped down to the 4th percentile and I was looked at harshly for having him on a vegetarian diet.  He has never eaten meat and now at 10 years old I can SOMETIMES bribe him to try some for money…  Anyway, his weight and the way doctors look at me about it have always frustrated me.  When he was diagnosed with diabetes, I had brought him in to the doctor’s office.  I called and said I needed him tested for diabetes.  We got there and the Dr’s first idea was that he was malnourished.  Wanted to know what I was feeding him, what a typical day was meal-wise.  Then, came back in the room and informed me that I was correct and he was in DKA.  Handed me some printed papers about what that meant and told me to drive straight to the hospital.
Two months later, he was still losing weight and the blood work came back saying it was celiac disease.  I had never even heard of this before.  The word “gluten” sounded a little bit familiar, but I never would have guessed what it meant.  The more I read about it and it’s atypical symptoms, the more I wondered if C had suffered from this his entire life.  Moody, irratible, generally not feeling good… These were all very normal for C.  Not that he didn’t have plenty of great, happy, fun times in his life, but moody was definitely something people could use to describe him.  Changed the diet, changed the kid.  Granted, he’s back to being moody, although I still think less than ever, but his ever changing blood sugars probably have a lot to do with that also.
Anyway, I just read an article about a little boy who’d accidentally been eating gluten (with celiac disease) and had mucous is his stools.  This got me thinking.  I’ve meant to look it up, but keep forgetting.  Sure enough, I’m reading that problems having to due with inflammed intestines will cause stools to contain mucous.  Examples given are Krohn’s Disease and Celiac Disease.  Other possibilities are parasites.  It broke my heart that 10 years ago they were quick to test for parasites, but nobody thought to check for Celiac.  It breaks my heart that recently I’ve read two articles suggesting that untreated Celiac Disease could actually be a cause for Type 1 Diabetes, not just a related autoimmune disease.
I guess I shouldn’t be suprised.  They say that it typically takes 10 years for a person to have symptoms of Celiac Disease before diagnosis and we’d be right on target for that.  I just really hope that it changes soon.  I hope doctors start testing for this more routinely.  My other son and I were tested.  Just a vial of blood and under $100 and it was done.  Why are more people not being told they should get this blood work done?  One in 133 people have it?  There is a serious lack of awareness going on.

a day late. but still appreciated.

Only a day after my total panic with E yesterday and forcing him to test for ketones I received a letter in the mail.  I had taken him to TrialNet at Children’s Hospital LA a few weeks ago for the “Natural History study for the development of Type 1 Diabetes” where he was tested for diabetes-related autoantibodies.
The letter was the results.

“The result of E’s screening test was negative.  This means that no diabetes related autoantibodies are present at this time.  This is not a guarantee that E will never develop diabetes.  It does mean that E is currently at a lower risk than if the test was positive.  TrialNet offers annual re-screening to all participants up to age 18 since autoantibody status can change.  We will send a reminder letter to you and encourage you to have E re-screened in one year.”

I’ve been really scared to get this info.  It’s scary thinking what if you get the letter that says it was positive?  Well, then they sign you up for a clinical trial trying to delay onset, but that’s some serious information to have inside you.  I’ve spoken to another family about this locally.  In their family, Dad and one son have it.  Younger son doesn’t and neither does Mom.  I asked if they’d considered testing their other son and they said no.  They just always watch him closely for any symptoms.  I’m such a panicker, I think I’m thankful for this news.  It will definitely allow me a little peace of mind.  I’m fully aware that it could change, but at least I won’t be forcing him to test for ketones again today.