Last September, Livie had her first Oral Glucose Tolerance Test because she tested positive for autoantibodies.
She was 143 at the 2 hour mark and less than 140 is considered normal.
She missed qualifying for the oral insulin trial by 3 points.
THREE MEASLY POINTS
So last Wednesday we tried again.
Starting Sunday night, I carb-loaded her as if she was preparing for a marathon.
Pizza, bananas, pasta - if it had a lot of carbs, she ate it.
Momma wasn't messin' around this time.
Wednesday morning I loaded her arms up with "Magic Princess Paste sent from Cinderella that protecsts skin from ouchies" (aka EMLA cream) and we headed down to Children's Hospital.
The last OGTT was horrible. Horrible. We had to wrap Livie up in sheets & hold her down to get the IV in. And the nurse missed the first time, so they had to repeat on the other side.
There was a lot of screaming & bribery involved.
This time was so different. The nurse was amazingly calm & had such a way with Livie.
When she asked if she could test her blood sugar, Livie held out her hand, stuck up her little finger and announced:
"I BRAVE"
Yes, baby girl. So brave.
Fasting BG 77. Off to a good start.
Time to get the "shot" (IV).
Livie was sitting in her daddy's lap and she start shaking. I took her little left hand in mine and she extended her right arm to the nurse. I shielded her eyes with my hand, turned her face into mine and told her the story of Princess Livie and her new purple dress.
The nurse was an angel. She nailed it the first try and when it was all done, Livie said, with surprise:
"It didn't hurt! I didn't feel it!"
Thank you, Cinderella, and your princess paste. Thank you.
She sucked down the "yummy fruit punch" and then snuggled into Daddy's lap and watched the new Lalaloopsie movie she got at Christmas...twice...lah lah lah, lah lah lah...
Time to get the "shot" (IV).
Livie was sitting in her daddy's lap and she start shaking. I took her little left hand in mine and she extended her right arm to the nurse. I shielded her eyes with my hand, turned her face into mine and told her the story of Princess Livie and her new purple dress.
The nurse was an angel. She nailed it the first try and when it was all done, Livie said, with surprise:
"It didn't hurt! I didn't feel it!"
Thank you, Cinderella, and your princess paste. Thank you.
She sucked down the "yummy fruit punch" and then snuggled into Daddy's lap and watched the new Lalaloopsie movie she got at Christmas...twice...lah lah lah, lah lah lah...
I brought my trusty Accu-check Aviva with me so I could get some real-time info because in this day & age waiting a week for lab results is just torturous and last time it was only 1 point different from serum results.
She was 150-something at the 60-minute mark. Eh.
She was 174 (we checked twice) at the 90-minute mark. Ack.
And then, perhaps sensing that I was going to have a nervous break-down if they didn't wake up and get to work, her little islets of langerhans kicked into overdrove for a beautiful 124 at the 2 hour check.
At which point Livie screamed: BANANA.
She was 150-something at the 60-minute mark. Eh.
She was 174 (we checked twice) at the 90-minute mark. Ack.
And then, perhaps sensing that I was going to have a nervous break-down if they didn't wake up and get to work, her little islets of langerhans kicked into overdrove for a beautiful 124 at the 2 hour check.
At which point Livie screamed: BANANA.
Then we took her to "HotDonalds" for her post-OGTT Treat
Where DD indulged in a nasty McRib seeing as how it's only available for a limited time.
I declined his offer to "try a bite."
I declined his offer to "try a bite."
So what does this all mean?
Well, once we get the real lab results back we should also get a profile that tells us much more about her risk factor. Right now all we know is that she is in the "highest" risk category. Thanks a lot. I need numbers. I need a timeline. My brain doesn't operate off of "most likely sometime in the next 10 years."
Second, because her first OGTT was abnormal, the oral insulin trial requires 2 normal OGTTs in a row. However, because I work in clinical research I know there's this little thing called a pre-enrollment eligibility deviation where the doctor can submit, on your behalf, a request for a waiver from certain inclusion/exclusion criteria. In Livie's case, the 3 measly points could very easily be attributed to standard lab deviation. So, fingers crossed it gets approved and we don't have to put her through another OGTT.
Third, it means I go crazy while I wait. Wait for results. Wait for when the big IT is going to happen. I am driving myself insane looking at her & wondering how many more days, nights & holidays we have left with her as a non-diabetic. I feel like ever since we got the initial TrialNet phone call I've been in this downward emotional spiral and I don't know how to stop it.
Yes, Tom Petty: The waiting IS the hardest part.
Oh don't let it kill you baby, don't let it get to you
Don't let it kill you baby, don't let it get to you
The problem, Tom, is that I don't know how to not let it get to me.
I'm desperately trying to figure it out.
Because I get this text in the middle of writing this post:
Well, once we get the real lab results back we should also get a profile that tells us much more about her risk factor. Right now all we know is that she is in the "highest" risk category. Thanks a lot. I need numbers. I need a timeline. My brain doesn't operate off of "most likely sometime in the next 10 years."
Second, because her first OGTT was abnormal, the oral insulin trial requires 2 normal OGTTs in a row. However, because I work in clinical research I know there's this little thing called a pre-enrollment eligibility deviation where the doctor can submit, on your behalf, a request for a waiver from certain inclusion/exclusion criteria. In Livie's case, the 3 measly points could very easily be attributed to standard lab deviation. So, fingers crossed it gets approved and we don't have to put her through another OGTT.
Third, it means I go crazy while I wait. Wait for results. Wait for when the big IT is going to happen. I am driving myself insane looking at her & wondering how many more days, nights & holidays we have left with her as a non-diabetic. I feel like ever since we got the initial TrialNet phone call I've been in this downward emotional spiral and I don't know how to stop it.
Yes, Tom Petty: The waiting IS the hardest part.
Oh don't let it kill you baby, don't let it get to you
Don't let it kill you baby, don't let it get to you
The problem, Tom, is that I don't know how to not let it get to me.
I'm desperately trying to figure it out.
Because I get this text in the middle of writing this post:
And I shove smarties into my child's mouth when she should be sleeping.
And I worry about the cavities.
And I worry if it's enough sugar...or too much.
And I worry what if she'd already been sleeping. Would she have woken up?
And she says she feels the low in her heart, but not in her fingers yet.
And not in her brain yet.
And I think:
Dear God WHY does she even have to deal with this???
And my heart breaks.
And I don't know how it will possibly manage when there's two.
You BRAVE too!
ReplyDeleteI know this is an old post, but as a parent, I can (almost) understand how you must feel (I say this as I quickly look through subsequent blog posts for anything newer). I hope it's because of a cold coming on, or yummy-fruit-punch residue on her fingers, or lab deviation. SOMETHING.
ReplyDeleteBe strong... you can work through this... however it turns out.
Well, her Risk is 7.5 which means she's placed in the "between 35 and 50% in the next 5 years" category. I believe a diagnosis of T1D is not IF but WHEN at this point. We've accepted that reality. It's just realy hard knowing it.
Delete(Sorry this is so long.) I really do understand some of what you're going through. Our oldest daughter is T1, she's 11, and was diagnosed at age 7. We went through TrialNet April 2012. Our second oldest daughter, now 10, came up with 4 out of 5 autoantibodies positive. Some were barely over the range and her GAD was really high (to us). She had a normal OGTT then we changed research locations so she could be enrolled in the oral insulin study. It's still a headache, what medicine is she getting? What are the effects? Will it do anything? What if she has the placebo so she's really not getting anything? Lots and lots of ongoing (no real answer) questions. Our daughter already was taking an allergy pill nightly so adding a capsule medicine hasn't been difficult (what about kids that aren't used to medicine??). I think the best part is the six month OGTT to get an idea of how her body is responding and that way you can "catch" anything early (ability to compare to previous test).
ReplyDeleteMy husband passed the testing fine and our son and youngest daughter passed fine (yes, that makes 4 children - girl with T1, positive AB girl, son, and daughter). I also flunked with 3 out of 5 autoantibodies positive. Argh! I started taking my blood sugar and it would range from 70-386. I struggled through a type 2 diagnosis to a different endo and finally getting an answer that made sense, "slowly developing type 1" last Oct, short-acting insulin at dinner. In Jan, I started short-acting insulin everytime I eat, still no "basal" insulin. So, I'm thankful to TrialNet for the surprise of my life! :) No DKA or emergency hospital visit for me.
We want to take this away from our children but we can't. As your daughter gets a little older, I think it will be easier b/c you'll understand how she's feeling and she can tell you if something is "off".
Thank you. Trial Net is requiring her to perform another OGTT within 7 weeks to prove she's eligible. I'm on the fence. I honestly don't know if I want to go through this. I know we'll keep up the OGTTs...every 6 months or so...but I'm not convinced to move forward with the oral insulin trial. Just seems like so much right now...an added stress that I don't need...or want. And then, on the flip side, I think: just do it for the sake of research. Ugh. I have until the end of February to figure it out!
DeleteWOW - what are the odds of 2 kids AND a mom becoming Type 1 Diabetic? Talk about major surprise. How are YOU doing with all of this?
Curious how long ago your daughter was confirmed AB positive and how long she's been doing TrialNet? They gave Livie a 7.5 risk score which puts her in the 35 to 50% risk over the next 5 years. My gut feeling is she's on the same track as her sister and we'll see a diagnosis around the age range of 5 to 8ish.
How am I doing? My fingers hurt from checking my blood sugar! :) I was really freaked out about our 2nd daughter at first but have calmed down. Growing up, I have a cousin who was type 1 then my dad was diagnosed type 2 and he has several relatives with type 2. So, our daughter's diagnosis was really surprising and though I knew this was a "forever" situation I didn't realize what it would mean to have a child with a chronic illness. A year after she was diagnosed, my nephew was diagnosed type 1. (My brother also has 4 kids and so far everyone seems ok. I'm hoping they'll do TrialNet.)
ReplyDeleteWe were tested April 2012, got results in May. I had my OGTT right away but with our daughter we waited until our oldest daughter's endo appointment so we could take care of both at the same time (her endo is 2 hours away where we used to live), July. I think it was Sep when we found out that the research center wasn't enrolling oral insulin yet so we could wait (she'd probably have to repeat the OGTT) or go to another research center (also 2 hours away, different direction). We chose to go to the other research center and she got started in Sep (she had to have an IVGTT and they mailed us the medicine). We went back in Dec for her "checkup" and blood draw. Then ?next month she'll have an OGTT and then in 6 months another OGTT. My husband and I have both gone but he stays with her for the appointment and I take the other child(ren) so I don't have to do the calming or listen to the screaming.
With her first OGTT, our bribe was she got to pick where we ate for lunch, she wanted pizza and chose Papa John's. I don't remember what happened for her IVGTT but for her checkup I took the other kids to Krispy Kreme and we brought her back a doughnut.
I don't know her "score" or risk. Of course, the assertion is just b/c they're AB positive doesn't mean they'll develop type 1 but it's hard not to assume they will. After we started, I went to a JDRF meeting and there was a mom whose 2nd son went through the oral insulin trial too. He still developed T1.
I think it would be ok to wait a while, it's a big commitment to take the medicine (I don't know what form she would take b/c she's so young). It's hard to allow your child to be a "lab rat". We decided to do it because it had already been studied and didn't seem to have any side effects and that she would be well-monitored to hopefully catch T1 developing early.
Kudos to taking her bs during the OGTT, I did that when I had mine so I'd have an idea and my meter #s were very close to the official lab results. :)
Our oldest daughter doesn't have any other autoimmune issues but I worry about that for me. I'm not worried so much about T1 but all of the possible friends it brings along. After reading other adults' blogs, I'm beginning to worry more about lows especially overnight. And we have really sucky insurance so I worry about costs. I wish my daughter's pediatric endo saw adults. :) I like my current endo but I feel like I'm coming at this from a really weird angle, I'm not unfamiliar with diabetes but I need help adapting the knowledge I have to ME.
Oh, and I worry about how our 2nd daughter would adjust to diabetes. Our oldest was always very compliant, she adapted really well. "What can I have?" As far as I know she never snuck ANY food. We work with her to be able to have whatever she wants (just may not happen that minute). Our 2nd daughter is very whiny, picky, and I'm afraid she wouldn't adjust well at all. She's very afraid of needles and pokes so I'm surprised how well she's done with the testing so far. I think one reason she (and we) agreed to the oral insulin trial is to possibly prevent or delay so many pokes (full onset of diabetes) and routine testing we might try at home if she wasn't being checked by them.
ReplyDeleteYour kids are younger and I haven't read much of your blog (just stumbled over from someone else's) so I don't know how your daughter's adjustment went. But I think a 2nd child being diagnosed would be a lot easier. And it would be easier b/c the 2nd child would just start doing what the first child does.
One common thread of the Diabetes Community is hope. And most of us are trusting in God, that He's walking us through this process. That He's watching over our kids.