The Plan For Kaitlyn

I can't tell you how much I appreciate the staff of Trialnet.  They are so kind and willing to listen and explain.  I wasn't excited about taking Kaitlyn back to be retested, but I'm also usually one to follow doctor's orders, especially as far as my kids are concerned.  They asked if I'd like to talk to the Doctor, and I really did.  He called yesterday (for free!) and patiently answered my questions.  The primary advantage to a diagnosis before insulin would be if she were to enroll in a study.  What if one of the drugs does halt the disease progression?  She would so benefit from halting the disease right now.  However, there is only one available, and the Lord has been good to give me no doubt that it isn't for us.  The Doctor addressed some of my safety concerns, but some of it comes down to a gut level decision, and he respected that.  He told me I could just watch her, and it is fine to wait and bring her back when Andrew goes again on March 1.  I explained that I was a math person and needed quantifying of "watch her".  We are going to check 2-3 times a week after the highest carb load meal of the day.  If we start to see sporadic high numbers, we will switch to 4 times a day - before each meal and 2 hours after dinner.  Obviously, if she had symptoms or if the numbers go up, I'll know to call.  I want to support her as soon as she needs insulin so that she can keep a strong honeymoon going through these growing years.  I'm not waiting because I'm in denial.  It just wasn't in her best interest to go back now.

The Doctor wasn't excited about my supplements.  He didn't think they'd harm her though.  The DHA had even been tested by Trialnet & given to mothers prenatally to see if it impacted T1D in the children.  It didn't.  I suppose that was supposed to have discouraged me, but I heard, "Even the doctors thought there might be something to it!"  And I didn't hear any concern that it wasn't safe.  He did say to be careful because you can't vouch for the purity in supplements.  I then talked to a pharmacist at a local natural drug store.  She helped me pick out some DHA/EPA with extra Vitamin D for Kaitlyn.  We started her on that last night and the Glucocare this morning.  We will continue with a multivitamin.  I didn't get warm vibes from either the doctor or the pharmacist on the ATP, so for now, this is all we are going to do.

Kaitlyn says she's fine, and I believe her.  When this first happened, I knew I was obsessing because I would go to bed at peace, but wake up feeling like I'd been working hard and dreaming about diabetes.  One of those days, Kaitlyn told me of one her dreams, which was more of a happy working out of school issues.  She is her same happy self.  We are still hoping insulin and highs and lows are a long way off.  She told me awhile ago that she didn't want diabetes, but that she wasn't afraid of it.  Later, she asked, "Mom, what if I do get diabetes?"  Pause.  "We'll probably both cry.  Then we'll take care of it.  You'll check your blood sugar and take insulin just like Andrew.  God will still be God, and you will still be you.  We'll be okay."  She seemed content.  She checked her blood sugar twice today.  We did a fasting because she woke up with a sore throat.  BG 90.  After breakfast and a shower, she said, "Mom, I feel weak.  Could I be low from the Glucocare?"  BG 86.  She felt fine the rest of the day.  She tried testing on her pinky today, something Andrew has never done.  She went and told him that he should really try it because she thought it hurt less.  If nothing else, I'm thankful for that she has had normal blood sugars for six years longer than Andrew.  I still hope it will be even more.