TrialNet OGTT Results

As soon as I hit "publish" on my blog post about Livie's Oral Glucose Tolerance Test the phone rang with her results.

 

She has a slightly impaired Oral Glucose Tolerance Test (143 at 2 hours, less than 140 is normal) and is on the higher end of a normal HbA1c (5.6 - normal is between 3 and 6) which puts her in the moderate to high risk category.

 

This all means she will most likely develop T1D within the next 5 years and, unless her next OGTT is normal, she does not qualify for the oral insulin trial. Also means we get to repeat the super fun test in 3 months around her 3rd birthday and cross our fingers that it comes back normal so that she can qualify for the oral insulin trial.

 

Not good news, but expected. Doesn't make it any easier to hear.

 

When Ella was diagnosed, it was like I just hit rock bottom and the only place to go was up. I was able to climb out of the pit by getting the firsts out of the way and building up my confidence.

 

With Livie, it's more like I'm standing at the edge of the pit looking into it, knowing that at some point someone's going to come along and push me into it but I just don't know when. And I can't very well start climbing out of until I'm in it. It's a very weird place to be.

 

I'm so very thankful for the amazing support I'm receiving. I'm so very thankful that other Moms who are going through this, or who have gone through this, or who have or are going through worse are there to offer support.

 

Thank you, from the bottom of my heart, for your prayers, support and words of encouragement.

 It makes the pit look less dark. 

TrialNet Oral Glucose Tolerance Test

A little over a week ago, we went to Children's Hospital LA (CHLA) for the next phase of TrialNet for Livie after receiving the news about the positive autoantibodies.

The next phase involved an oral glucose tolerance test (OGTT), A1C and genetic testing = 10 hour fasting, a super fun IV poke & nasty sugary drink.

Livie was a great sleeper until she figured out how to crawl out of her crib, which was right around the time Ella was diagnosed. The only way to get her to go back to sleep was to hand her a sippy of warm almond milk & bring her in bed with me. Hey - don't judge. I was emotionally and physically exhausted and did what I had to do to get some sleep. And 8 months later, I have yet to break this new habit.

Enter the need for 10 hour fasting. Livie woke up the night before her test at 4am wanting...warm almond milk. Since we couldn't give it to her, she never went back to sleep. Yeah, that's right folks - up at 4am on day of big test. We left our house around 6:30 am and got to CHLA around 8:00am.

We slapped some numbing cream on her while filling out paper work and then took a 15 minute walk trying to convince her that this was super fun and to keep her from asking for food.

 Yay! CHLA is super fun!

 

We headed back up to the TrialNet room and Livie instinctively knew that no fun was going to happen in this room. Time for the IV.

 

We wrapped a screaming Livie in a sheet like a little burrito with only her arms exposed and it took 3 nurses and Dad holding her down to get the IV in. Thank goodness we put numbing cream on both arms because the vein blew in the first arm. I willed the nurse to get it the first time on the next arm and thank goodness it worked.

 

Obviously Livie was pretty miffed about the whole ordeal and was screaming (I mean SCREAMING) and trying to rip the IV out and the study coordinator said, "If she doesn't calm down we're not going to be able to do this" at which point I thought to myself that we did not come this far for nothing and come hell or high water we were seeing this thing through. I did what any good mother would do: I bribed my kid.

 

I took her to the first floor of CHLA and brought her into the pink sparkly gift shop and told her she could have ANYTHING she wanted.

 

"I want the dragon!"

 

I turned around to see a life-sized stuff dragon at the entrance of the gift shop and promptly told her it wasn't for sale. Surprisingly satisfied with this answer, she settled on 2 small Barbie dress-up dolls.

 

Happy, and starting to show signs of being extremely tired, we headed back upstairs to the third floor and offered her the red, nasty sugar drink which we called "yummy fruit punch" in her sippy cup. She sucked it down like a champ (yay!) and fell asleep in Dadddy's arms. Thank you, Lord.

 

 

She slept through the next 2 hours and 4 blood draws.

 

I have yet to get the results.

 

I do know that her fasting was 88 and her 2 hour BG was 142 according to my accu-check aviva.

Not bad, but not great, either.

 

I have mixed feelings about getting the results. I want them, because I'm sick of waiting. At the same time, not knowing affords me the ability to live in ignorant bliss. Because until I get that phone call, I can hope that maybe all of her autoantibodies will miraculously turn negative or that she does, indeed, have the protective gene, or there was some big mix-up with the original blood test results and she never had autoantibodies to being with.

A Fond Farewell to Dairy

 

I've never been a big fan of cow's milk for a variety of reasons. My girls have, for a long time now, consumed almond milk (original for Livie, vanilla for Ella) much to my pediatrician's dismay.  

 

However, they loved their cheese and yogurt and ice cream. I mean, really, who doesn't love cheese and yogurt and ice cream? Nothing says ahhhh like a glass of wine, crackers and aged Gouda.

 

After Ella was diagnosed I read many articles about the possible link between cow's milk and Type 1 Diabetes. But seeing as how her insulin-producing beta cells had already taken a lickin' a quit tickin', I didn't really see the point in proactively avoiding dairy.

 

Until we got Livie's TrialNet Results.

 

And I decided we were going dairy-free because I don't want ever want to look back and ask myself

 

What if?

 

Am I grasping at straws? Maybe. But who cares? What have we got to lose?

The more I research, the more I'm pretty much convinced this is the right thing to do for my family.

Having studied Public Health for my Master's Program, I find it interesting that Harvard's School of Public Health's "Healthy Eating Plate" is noticeably void of dairy. While this is in conflict with the USDA's My Plate, I have to say that if given the choice between trusting Harvard or the USDA, I'll take my chances with Harvard.

And you know what? Dairy-free is quite delicious.

So Delicious Almond Milk Ice Cream Treats are amazing. And cashew sour cream is delicious with chili. And I even found a vegan ranch that the girls like just as much as their previous favorite Bob's Big Boy dressing. Out with the Fiber One Bars and in with Envirokidz Crispy Rice Peanut Choco Drizzle Bars (dairy AND gluten-free).

Friday night we went to a local pizza place and had a dairy-free pizza (made with daiya cheese) and treated the girls to some dairy-free gelato. Ella said the pizza was better than Toppers. Awesome.

This whole dairy-free thing has been WAY easier than I thought and I am discovering so many wonderful alternatives that don't taste the same but are just as delicious. Did it make packing up my collection of delicious organic cheeses and handing them over to the neighbor any easier? Yeah, a little.

Tomorrow we have a birthday party at Chuck-e-Cheese to go to. I am going prepared with a delicious dairy-free pizza and dairy-free, gluten-free almond flour banana and chocolate chip cake.
Ten bucks says my stuff is WAY tastier and better looking than Chuck's.
I never was a fan of his pizza but DANG can I rock the virtual jump rope.