Happy Mother's Day!

Happy Mother's Day to all mothers!  Check out this amazing blog post by another D mom!  http://www.ourdiabeticlife.com/2012/05/we-are-d-mothers.html

A Timeline For Kaitlyn's Journey

Kaitlyn's story began after Andrew was diagnosed with type 1 diabetes on January 25, 2008.  She was the only one of the kids at that time to volunteer for Trialnet's Natural History Study.  She was so excited to be a part of real science and to have the opportunity to help doctors learn about type 1 diabetes and move us closer to a cure.  Since then, the other boys have all volunteered and are all negative for autoantibodies.  I thought a timeline might be interesting, but I've struggled with the formatting.  I hope you can read it okay!

 

• January 25, 2008 Andrew’s type 1 diabetes diagnosis

• February 18, 2008 Kaitlyn volunteers for Trialnet Natural History Study

• April, 2008 We learn that Kaitlyn is positive for 3 antibodies: GAD65, ICA512, and ICA

• June, 2008 Kaitlyn takes her first oral glucose tolerance test (ogtt) and is tested for the protective gene. She does not have the protective gene, but her ogtt is normal and A1c is 4.8.

• December, 2008 Kaitlyn has her first impaired glucose tolerance test. She finished with a two hour reading of BG 164.

• June, 2009 Normal ogtt. 120 minutes BG 131.

• December, 2009 Impaired glucose tolerance. 120 minute BG is 174.

• June, 2010 First time I asked for readings and realized she had impaired glucose tolerance. She went over 200 for the first time and ended at 194! 

• July, 2010 We add Vitamin D to her daily multivitamins.

• December, 2010 Better ogtt - Final BG 141

• June, 2011 Final BG 134. Under 140 is normal, but since her blood sugar climbed to 208 at one hour, it is classified as indeterminate rather than normal.

• November, 2011 Kaitlyn has a minor toenail surgery, which doesn’t heal well. It infects on Thanksgiving and continues to give her problems for the coming months.

• December, 2011 Final BG 257, which is definitely diabetes. Since she has no symptoms, the test has to be repeated to confirm. Her A1c is 5.0, the highest it has ever been, but still normal.

• Late December, 2011 I talk with the doctor and we decide to watch her and not return for a repeat ogtt until Andrew’s next appointment. We begin random after meal checks and occasional fasting BGs to keep her safe.

• In addition to the Vitamin D, Kaitlyn begins taking DHA and Glucocare.

• January, 2012 Final toenail surgery and confirmed bacterial infection.

• March 1, 2012 Ogtt. Final lab reading 200. A1c back down to her normal 4.8. Results didn’t come in until Monday.

• March 5, 2012 Official diagnosis day when the second lab reading 200 or over came in. So close!

 

Kaitlyn's Official Diagnosis - 3/5/2012

Kaitlyn was officially diagnosed with type 1 diabetes today.  Her ogtt came in at exactly 200.  Her A1c is back down to 4.8 though, which makes me feel better.  Maybe the supplements are helping prolong the honeymoon.  I asked to be sent the antibody numbers too when the labs come in.

She won't go on insulin yet.  We just need to take a couple fasting blood sugars and a couple after meal (high carb ones) per week.  She has taken a fasting BG every day for the last week, so in some ways we're backing off.

Kaitlyn is doing okay.  She's had a few good cries and has texted her friends.  It's good to know that she has friends at school and church supporting her too.

Andrew has had a really hard time with diabetes and sports lately.  I'm too tired to tell the stories from the weekend.  Yesterday really scared me.  I really hate the idea of Kaitlyn fighting this battle too.  Today was another step in that direction, but the reality is that she isn't fighting the same fight, at least not yet.  Please pray that this honeymoon stage lasts a really long time!  And please pray that the Lord comforts her though this stage.  She is an amazing young lady!

Maybe Not!

I expected it to be clear cut, but it is possible she passed!  Her fasting was 82.  I asked for a meter number at 90 minutes and two hours.  90 minutes BG 180.  2 hours BG 185.  Still going up - bad sign.  Under 200 - good sign.  I asked to check our meter to see if it's just reading high.  201.  Everything depends on the lab readings, so we will have to wait and see. We should hear Monday.

Thank you so much for your prayers!  We can feel them!

It's Time

So, I've worried about diagnosing Kaitlyn too soon, eliminating her from trial opportunities and saddling her with diabetes tasks before they were necessary.  I was concerned enough to consider not taking her tomorrow.  Then she had the sniffles this weekend.  This week her fastings have been higher, usually around 117.  Normal is under 100, and diabetes is over 125.  I guess she's starting to struggle.  So, it's time.  Her two hour number was high last night (144), so we're not hopeful that she will pass the oral glucose tolerance test tomorrow.  I thank God for the clarity, even though it wasn't the way I wanted.  Please continue to pray for Kaitlyn in the coming days.  Thanks!

Kaitlyn's Getting Nervous

Please pray for Kaitlyn!  We are scheduled to return to Vanderbilt March 1 for her confirmation glucose test.  Kaitlyn is getting more and more nervous as the date gets closer.  I don't blame her.  We can withdraw from the study at any time, and I gave her that option.  She wants to go.  And she doesn't.  I so understand.  Realistically, we know she's progressing toward type 1, but a true diagnosis is so much scarier.  Taking supplements every day has been a constant reminder of where she is.  That part has hurt.  Yet, if they help, taking a few supplements and avoiding D for a little longer is worth it.  Maybe the test will show how much they are helping.  Then maybe they won't.  Once that 2 hour number shows over 200, there is no turning back.  We want to know, and we want to run away and hide our heads in the sand a little longer.  At home, her fasting and 2 hour after meal numbers are normal.  If she tests normal, I'll be so glad we went!  I'm also curious as to whether the antibodies have improved.  I want to think positive.  But then she thinks she's been low a couple times lately.  On Sunday, she felt "low" and was 79 a few minutes later when we could test.  I thought she might be hungry, but she said she knew because she felt it in her thighs not her stomach.  I think lows can be another predictive sign of not regulating glucose properly.  So, please take a moment and say a prayer for Kaitlyn please!  It's a lot to face for a 13 year old.  For anyone.

Oh, and Ben ran a high fever Friday and Saturday.  Today, Ryan came home with a stomach bug that's going through the middle school.  Please pray they keep their germs to themselves! Thanks! :)

Two days of Omnipod

Wow!  Things were so crazy around Christmas with Kaitlyn and Andrew switching insulins that I can't find any mention that we bought an Omnipod!   It's a tubeless pump that holds the insulin right at the site so there is no cord and no pump to keep in your pocket.  You can see more here:  http://www.myomnipod.com/about-omnipod/  We took advantage of the out of pocket purchase program for several reasons.  First, Andrew's Ping goes out of warranty the end of this year.  However, several new pumps should be coming out in the next year or so and may be worth waiting on.  The Omnipod comes with a two year guarantee, so it helps bridge the gap.  Andrew didn't think he'd like the Omnipod, but he is interested in a potential tubeless pump, so it made sense to give one a try before committing for four years.  Last, he wants to play football in the Fall and you can't do that with a traditional pump on.  I know the textbook answer is to disconnect and reconnect and bolus as needed.  Realistically, where can you put a site that you can easily connect & disconnect with all those pads on?  Shots or the omnipod seem like the only choices for football.

The Cut the Cord program said it ended in 2011, so we bought it the very end of December.  Andrew said he wanted to do this, but he was in no hurry to get started once it got here.  We had plenty of others things to do around Christmas, so finally we scheduled it for this weekend.  Friday night, he counted, "One, two, .... (desparate) I really don't want to do this!"  He was so scared that I wanted to cave too.  A younger child at school who uses the pod told him that it really hurt when it went in.  We had numbed the area since he was so nervous.  We'll run out the pump supplies before we can reorder if we don't use at least a couple weeks worth of pods.  So, I told him he had to.  Afterwards, he said that he didn't feel a thing!  I think I was as relieved as he was.

Tonight, I asked him to give the Omnipod a grade.  B+.  I asked him to grade the Ping.  B-.  He admitted that he likes it much more than he thought he would.  He intended to wear it only during the two weeks I'm insisting on now and during football.  He thinks he might just switch.  There are pros and cons to both, which I'll write about another time.  He has to take insulin, but he can choose how it gets there.  For today, it's through the Omnipod!

I will tell one story before signing off.  Andrew went to a roller skating party today.  One of his friends was having a hard time staying up on his skates.  Andrew came over and handed me Dex saying, "Here. I'm going to go fall down so Friend doesn't feel so bad." and took off before I could warn him not to break an arm or something.  We really don't worry much about the pump, but it was nice to have the feeling that if something happens to it, we'll just peel it off and put on a new one!