Why I Recommend Trialnet

I've seen some questions lately, so I'd like to summarize our experience with Trialnet and explain why I would do it all over again.

The Trialnet Story

January 25, 2008, our lives changed forever with Andrew's type 1 diagnosis.  Our children were given the option of participating in Trialnet, but none of them were pressured to participate.  Kaitlyn immediately volunteered, and she was the only child tested at the next doctor visit.  She wanted to be a part of science and help doctors find out what caused diabetes.  She was so eager that I'm not sure we thought too long about how it would feel if the results came back positive.  Until they did.  I won't lie.  It felt like I'd been punched in the stomach...again.  They explained that it didn't mean she would get diabetes, because some people with antibodies never get diabetes.  They recommended a genetic study for a gene that they have found protects against diabetes and an oral glucose tolerance test.  Her genetic study revealed that she did not have the protective gene.  In 2008, she had four of five antibodies and was placed in the highest possible risk group with over a 50% chance of developing full type 1 diabetes within five years.  The boys all one by one volunteered and tested negative.  Kaitlyn began oral glucose tolerance tests every six months, and fell in love with the nurses who cared for her.  She loved being doted on, and, yes, she loved getting paid to participate. She went every six months until she failed two tests in a row and was officially diagnosed on March 5, 2012.  She is still doing great without insulin though.  Her highest ever A1c has been 5.1.

So, we've lived everyone's worst fear.  First antibodies and then diabetes.  She was diagnosed so early though, that we could still be blissfully unaware.  Do I hate diabetes?  YES!!!  Do I have any regrets about Trialnet?  NO!!! I have several reasons why I'm glad we participated.  But Kaitlyn is 13 now, and I thought you might like to hear first how she feels about it.  I asked her the following questions and typed her responses.

Q: Would you encourage someone to do Trialnet?


I encourage it because it gives you some warning. Sure, it’s sad when you find out, but at least you’ll be prepared for it when it does happen.

Q: Did it drive you crazy worrying about it?

I wasn’t worried. I just kind of enjoyed myself and got to know the really sweet ladies.

Q: Do you ever wish you didn’t know?

No. I don’t wish I didn’t know, because then I’d be more devastated and less prepared. It would seem so sudden.  At least now that I know I’m diabetic, I enjoy the short time that I have. I know I need to cherish things because it will be harder soon.

Obviously I've worried about her over the years.  I grieved a bit when I found out she had antibodies, when she didn't have the protective gene, when she had her first impaired glucose tolerance test, when she failed the first test, and when she was diagnosed.  But I have never regretted being a part of Trialnet. 
Here's why:

1. Trialnet protected Kaitlyn's health and will protect her from metabolic memory.


Sure, we all know the symptoms of diabetes. But, may I add, that we all know the symptoms when the body is already really struggling with diabetes! We don't know when the blood sugars first start to rise. I don't like to think about metabolic memory much because I can see in hindsight that Andrew had symptoms long before diagnosis. His initial A1c proved he had high blood sugars for a long time. However, Trialnet has given me the opportunity to protect Kaitlyn from this very real threat:

"The concept of a “metabolic memory,” that is of diabetic vascular stresses persisting after glucose normalization, has been supported both in the laboratory and in the clinic and in both type 1 and type 2 diabetes. " ( http://jcem.endojournals.org/content/94/2/410.abstract)

It's the idea that once stressed, the body still remembers some of that destructive behavior. I wasn't able to protect Andrew. But I know this - Kaitlyn won't be in DKA at diagnosis. She won't have poor metabolic memory. She will be healthy and get insulin support as soon as she needs it. Her pancreas won't be burnt out like Andrew's was. We will support it and hopefully have a long, wonderful honeymoon. We will do everything we can to keep her as healthy as we can. For me, waiting until she shows excessive thirst and urination is not good enough!

2.  We know much of what we know about the development of diabetes because of Trialnet.

An adult friend of mine was told that he got the flu, it attacked his pancreas, and he got diabetes that weekend.  Now, we know that isn't really true.  An illness may tip Kaitlyn over the edge where she needs insulin, but that trigger didn't cause it.  This process is well under way.  That is also the reason that we have prevention trials now.  There is hope that we may learn how to prevent this disease even before we can cure it.  That means none of my grandchildren will have this horrid disease.  Those trials wouldn't even be thought about if not for what we've learned through Trialnet and similar trials.

3.  Simple blood tests are giving clues to find a cure for our diabetic children.

They have found people who have antibodies but never get diabetes.  They have found a protective gene that most of these people have in common.  Within that is a clue.  What does that gene do to protect them?  Can we do the same thing for others to protect, treat, or cure???  They have learned to predict diabetes well with antibody testing.  Surely, the functions of those antibodies hold clues as well.

4.  Trialnet offers trials for prevention.

Trialnet has prevention trials for people who qualify.  For example, oral insulin was proven to not prevent diabetes, except that it did have a delay effect in a small subgroup with high levels of a certain antibody, the only one Kaitlyn didn't have.  The oral insulin has no side effects, at least that I know of, and may delay onset of symptoms by almost five years!  Ask any diabetic if they would have taken a pill every day to have five more years before diabetes!  There are a couple of new trials out now.  I started Kaitlyn on some supplements after her diagnosis that my other children are not on.  Her high bgs regulated and she has been doing great.  She wouldn't have that support if we didn't know. 

5.  Trialnet set a positive framework in place for Kaitlyn before she needs it.

She loved, loved, loved the people at Trialnet.  They were so positive and great models for her.  She has been curious about diabetes and willing to learn long before she needs it.  I'm not sure my other non-d kids can carb count, but she can because she wanted to learn.  She has had the opportunity for a gentler intro into diabetes.
I wish I could take diabetes away from Andrew and keep Kaitlyn from getting it altogether.  I have grieved in stages and will grieve again when Kaitlyn starts insulin.  I know it isn't over.  I can completely understand why some aren't willing to know.  To me, the protective benefit of knowing early is so worth it.  I don't check my other kids.  Until diagnosis, I wouldn't check Kaitlyn unless I saw symptoms.  Now, we check about two fastings a week and two after meals a week.  We will call if either of those numbers starts to creep up.  Hopefully, that will still be a long way away!!!

Rising Numbers For Kaitlyn

Kaitlyn has a cold, and has lost her voice.  We watch her numbers more closely when she's sick.  Everything seemed fine until last night.  BG 158 after dinner.  Normal is under 140.  Her fasting this morning was fine, so we hoped it was a fluke.  We set the timer after dinner to get a good two hour reading.  153.  We tested again at 3 hours - 145.  These aren't horrible numbers.  They just aren't NORMAL ones.  Maybe they'll go back to normal when she gets well.  Or maybe the cold will be the straw that broke the camel's back for her struggling pancreas.  She goes to Vanderbilt next week.  Please pray for God's Hand to protect her!!!  Thank you!!!!

A Poem Written Before Last Year's Walk

It's time to walk again to raise money to find a cure for type 1 diabetes, but I haven't sent out any emails yet  about the walk!  I found this poem that I scribbled down one night last year as I prepared to organize last year's walk team.  I'm definitely not a poet, but it still conveys much of what I feel:

Will you walk with me again?
I really hate to ask.
Would it hurt to skip a year?
Should last year be the last?

But then I think of when...
We first learned that life had changed
For precious little Andrew
...Not the life that we had planned.
How every day is fraught with peril
Highs and lows that come so soon
And I think of complications
   that always seem to loom...

I think of Kaitlyn and her carefree life
Despite her antibodies.
Despite the oral glucose test that
   proves her body's fighting.
I think of the sad look
   in the researcher's eyes
As he reminds the stats suggest
   it's just a matter of time.

She too will join the ranks of those
Who fight this mighty beast.
 She too will poke herself
   too many times a day.
Try to plan for each and every thing
   that might could come her way.
They count each carb, plan every bite,
   and inject for every morsel.
They wear contraptions just to live
   as close as they can to normal.

Will you walk with me again?
It really isn't in vain.
They've come so far since
   this race for a cure began.
We have good meters and better insulin.
Better pumps and even better
   continuous glucose meters.
We're running trials not in mice
   but in real, live human beings.
There's even one they hope to use
   for people such as Kaitlyn.
One that might stop this disease
Before enough damage is done.
It might not fixed the diagnosed,
But prevent it so there's none.

The artificial pancreas is an aid
   for those who wait.
Not a cure.  A treatment sure.
One that ends the swings
   from highs to lows and
The fear and embarassment they bring.
Less fear when playing, sleeping,
   pitching, testing.
No future lows when he is driving.
Less chance of complications coming.
Less change of Andrew dying.

Will you walk with me again?
Yes, research needs the money.
But, will you walk with me again
Just because we need YOU coming?
It's our 4th walk
So we're old pros.
But we don't want to be.
The fear set in that this is just
   how it's going to be.
No breaks in sight.  Not one night
When we know for sure
  he'll be alright.

It's not that we haven't learned
The tools and tricks to cope.
We count, measure, calculate
and know just how to dose.
He can go dangerously low
without much adrenalin from me.
Just another story and a dose of reality.

Andrew is amazing.
My little hero man.
He handles all of this as well
   as any young man can.
We're not pathetic.  We're okay.
I'm not telling a lie.
It's just tiring and lonely.
We're thankful for our friends.
Will you say a prayer for
   Kaitlyn and Andrew?
Will you walk with us again?
Thank you!

Surprise Ketones

Andrew had very large ketones tonight!!!  We completely didn't see it coming.  At lunch, his BG was 72 (great number), and he ate a slice of meat and some pears.  He rose steadily through the afternoon, so Gene had him do a correction about 30 minutes before dinner.  He was in the low 300's then, but he was coming down before we sat down to eat.  Andrew ate and got seconds, but then said that he didn't feel good.  He was a little nauseous.  So, I asked him to check his ketones.  He looked at it and said, "Time for a site change!!!"  It was black.  The site was two days old and looked fine, but we changed it anyway.  I was afraid to give an injection because he had a large dinner bolus on board.  Or did he?  We checked blood ketones, and they were the highest I've ever seen - 2.2.  I called the doctor just to be sure since I've never seen ketones that high.  She said we were doing everything right and that the ketones should clear.  Push 4 ounces of fluid per hour and give any corrections >300 with a syringe.  Andrew was happy that his last check was 298, so he could do the correction by pump. His last ketone check was also down to small.  Crisis averted.  I'm so glad he wasn't playing ball or exercising tonight.  Once we found the ketones, we put in his favorite movie, The Blind Side, and sat on the couch.  I'm also thankful for Dexcom, because I turned his basal rate of insulin way up until I could see his BG coming down.  His basal rate right now is still insanely high (+120%!), and Dex says 240 and steady.  I don't want to cancel the basal yet, but I can't sleep with that going either!

General Update

Wow!  I haven't written in a long time!  I think about it often.  This blog has been theraupeutic for me, but I've been so busy that I haven't had time to write. Many of my imagined posts have involved  the Ping and the Pod (insulin pumps) that have been warring for our affection for the last few months.  Both have won battles, and there have been days that I have been ready to claim a victor.  Tonight, however, I'm still not sure of the winner.  So that story will have to wait for another night.  This one will be a ramble just to get past the block of the first post.

Kaitlyn blood sugars are doing great!  She hasn't had "high" blood glucose since diagnosis.  She was a little concerned about a 143 Tuesday night after getting hit in the head with a softball.  It left a scary dent in her forehead, so I took her to the ER.  Despite five kids, I've taken my kids to the ER three times.  1.  When the nurse at church told me too when Will fell out of a swing.  2.  When the doctor sent Andrew to the ER at diagnosis. 3. When Kaitlyn was hit Tuesday night.  She checked out okay, and they didn't even diagnose a concussion.  She looks and feels better.  I still feel a dent though....  As far as diabetes goes, I think she/we have worked through the grief stage.  I, at least, don't think I'm in denial of what will come, but, realistically, what she's dealing with isn't what we know as diabetes.  She checks her blood sugars, and they're always great.  I want it to stay that way a really long time!!!

What I didn't see coming was how seeing her normal BGs make me feel like a failure with Andrew.  I'm not only fine, I'm happy with a fasting BG of 120 for Andrew.  If it were Kaitlyn, that would be horrible!  I think I've stepped backwards emotionally in handling diabetes.  Don't get me wrong.  It's better than the beginning because I don't think about diabetes every minute.  In between, our life is peaceful and joyful.  There are days too that diabetes doesn't get any more attention than a neccessary inconvenience.  Then it a second, it takes your breath away again.  I hate diabetes more today that I hated it at the beginning.  I hate what it does to my boy.  I hate that I can't fix it.  I can't even regulate it well.  I'm tired of poking him.  I'm tired of seeing him high and low.  I'm tired of worrying about complications that may come if I don't do a good enough job helping him now.  Or complications that might come even if I do everything right.  I'm tired of the stories that I didn't write here.  The pod failures, the dex graphs, the bad baseball low, the forgotten diabetes bag, the swim party with friends....There are far worse things than diabetes, but I'm just tired and see no end in sight.  I think I have "diabetes burnout"!

One unwritten post would have told the story of Andrew participating in a research study to see if patients with type 1 for over three years still make any of their own insulin.  Andrew does not.  Those who do still make some of their own have fewer complications and usually lower A1c's.  Bummer, but not a surprise.  Andrew gets sick if his pump comes out in his sleep.  We didn't really think he was making that much of his own insulin! 

On a happier note, Andrew is actually doing great!!!  He finished elementary school with all A's all the way through!  He played travel baseball this Spring, and his team won the state tournament!!!  He is growing well in every way, and is headed to middle school this Fall!

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! 

He Just Looks Like A Normal Boy To Me

You've been there since the beginning of this journey.
Yet, you commented yesterday that Andrew
Seems like a normal boy from your point of view.
Thank you.  I think.
I'm glad that's all you see.
I've worked hard for that.
I want you to see Andrew.
His giftedness.  His personality.  Who he is.
He isn't diabetes.
I don't want people to fear having him over.
I don't want coaches to be afraid to have him on his team.
So, I'll tell you that it is all fine.
We check his blood sugar and treat and say that he can do anything.
I'm not lying.
He can.  I'll move heaven and earth to be sure he can.
We still live life, full of joy, just like anyone else.
I'm glad you don't see all the things
We do just to keep him alive.
I'm glad you don't see him when an injection hurts more than normal.
You didn't see him look at me yesterday after putting a site in his leg
And simply say, "I wish I didn't have diabetes."
Did you see the tear slip from his eye
At the party on New Year's Eve
When his blood sugar was so low
That he could only sit with his dad
And hope he would feel better soon?
I'm glad you don't know that we were up
for an hour and a half Friday night.
He played basketball for the first time since Christmas.
It must have made him more sensitive to insulin.
We turned down his basal.
But he still went low.  And stayed low.
I got it to 74 & crawled back into bed.  Dex buzzed & Gene went in.
He was low again.
At six, I tiptoed into his room.  The covers were over his head.
Dex read ??? instead of a number.
Why was my first thought, "Is he dead in bed?"
I hated to take his blood sugar & wake him up.
It's hard to go back to sleep if woken at 6 am on Saturday morning.
So, I touched him, just to see if he was breathing.
He was.  So I said a prayer and let him sleep.
I'm glad you don't see his face change color
When his blood sugar is high or low.
That you don't know how hard his body fights this disease.
I'm glad that you watch him on the ballfield
And see a normal boy.
Only he and I should wonder
Is his blood sugar okay?
Is he tired like all the other boys?
Or is it something more serious?
Does he need sugar now?  Or insulin?
Is that fatigue an adrenaline high?
Or did the site come lose and he's on the way to DKA?
I'm glad you don't see him when he is sick.
When ketones must be checked often
And a stomach virus can easily mean an ER trip.
I don't want you to think these things.
Yes, they are a part of our lives.
But Andrew is more than these things.
He loves baseball, football, and basketball.
He can play basketball on a ripstik.
He entertains his little brother.
He is the sportsman for his school news network.
He gives up his P.E. time to help a special needs buddy play.
And he loves every minute of it.
He loves the Lord.
He makes me laugh everyday.
So, thank you, Friend.
I'm glad he looks normal to you.
We must give Diabetes its due respect.
After that, you're right.  He is just a normal boy.