TrialNet

Got the results from the glucose tolerance test and other tests from TrialNet - the other study that came in after she tested positive for a second antibody.  It didn't mention the other genetic testing they were supposed to be doing and, of course, it's after 5 on Friday so can't call them to ask about it.  

I did get the glucose numbers, which were all fine, and the results of the FOUR antibodies they tested her for (TEDDY only does 3) and she tested positive for 3 of the 4.

The end result?

She has a greater then 50% chance of developing diabetes in the next 5 years.

Sucks rotten eggs.

We survived

Actually got there early because I was concerned about a traffic report I was hearing so took the toll road up to Colfax.  Yeah, 1/2 an hour early.

But they had people there already so didn't have to wait long and they started early.  Did the whole weighing (42.2 lbs) and measuring (41.5 - with flipflops so I'm calling it 41 even), blood pressure and temperature stuff.

Then they took us to our own private little room where they put the cream on her arms and plugged in the first dvd (the Squeakquel followed by the Princess and the Frog and then DragonTales episodes at the end) to start watching.  They also took her order for breakfast (scrambled egg, bacon, banana and milk).  Yep, when she was done they fed her breakfast instead of just shoving her out the door like I remember happening.

When they came to put in the iv contraption I told them that she doesn't like distractions (blowing bubbles etc) and in fact likes to watch.  The nurse laughed and said "we've heard about her" and the other nurse that came in to help hold her arm just started unwrapping stuff.  I admit I was proud to hear that she had a positive rep that extended over to the hospital.  While this was happening we started getting a lot of visitors.

The lady from Trialnet (the prevention study) came to go over the paperwork and releases and I got to sign and initial a bunch of stuff.  The lady from TEDDY also came in and both made their requests for blood.  It was funny watching them all stand there in amazement (new TEDDY lady) while Miranda just put her arm up on the arm of the chair and they stuck her.  They started sharing horror stories (including the boy who freaked AFTER all the needles were stuck and he'd drunk the sugar liquid - in other words after all the hard stuff was done)

Fasting blood was 82 and they took about 55ccs of blood then.  A short while later they came back and took the first blood samples for the glucose (they wait for the child to calm after the initial stick before starting) and asked Baby what flavor she'd like to drink (lemon-lime).  They came back with that and she was given 5 minutes to drink it but it didn't take her that long.  Another set of blood samples (3 each time - small stick tubes) was taken and then again every half hour for the next two hours. (After 2 hours was 121)

During that time TEDDY came back (A1C results were 5.0) and had me do some of the questions they ask every time and then gave us a meter, test strips, lancets and ketone strips.  They had me do it on myself, another nurse (who is a diabetic - got to ask her some questions about the pump) and then test Baby but two attempts on her didn't get me enough blood for a valid test.  They were satisfied that I knew what to do anyway so it's all cool.  I'm supposed to test her a couple times a month and every day if she's sick.  I'm also supposed to use the ketone strips if she's sick and especially if she vomits.  They also gave me a beginning book on diabetes so I'd have more information, phone numbers for questions, phone numbers for use if her numbers are high on a weekend or at night etc.

I'll get two separate sets of results.  One in 3-5 weeks and the other in 4-6 weeks but I forgot which was which.  TEDDY will be their standard antibody test and the Trialnet will give me the full sugar results and I'll hear about some gene markers they are testing for which should give me a better idea of risk.

Still Melting Down

Got the actual paper/letter with the results today.  Not only did she get the second positive but her numbers jumped up again on the other one.

I get my last UI check in two weeks and it's only for one week.  I qualify for state extended benefits but will only get that if the federal government does another extension that goes through the end of this month.  At least.

So I'm desperate for a job with good pay and great insurance AND the flexibility I'll need for her testing etc.

Got to talk to the doctor.  Finally.  (Part of the whole communication fiasco).  She basically reiterated everything I got from the nurse yesterday.  May have screwed up though because she asked me if the father had been treated there and what his name was and I told her.  It didn't dawn on me until I hung up that if he was treated there then she would know his parents etc and I may have let a cat out of the bag.  Hopefully doctor/patient confidentiality will cover me.

On a side note if I read the paperwork correctly (they emailed me a copy besides the set they are mailing) then as long as she is showing 2 positive antibodies then she'll have to do the glucose tolerance test every six months.  What ever job I find better have some flexibility built in if I'm going to have continue to deal with this. 

The doc called about the results of Baby's last TEDDY tests.  Not quite that simple because of course there had to be some communication issues but the long and short of it is that Baby now has 2 out of the 3 antibodies showing up.

She has a 50/50 chance of developing Type 1 diabetes.

Again the positives of being here in Denver raise their head because:

They want to schedule a glucose tolerance test for her.  At Children's.  They will put in an IV so they won't have to stick her ALL SIX TIMES (because they do a -10, 0, after drinking and each hour for the next 3 hours) and she'll get to watch movies and play video games but it will be fasting so of course it will be fun.  But it's free.

They will also be giving me a meter, strips, etc (free) so that I can test her blood sugar when ever I feel like her behavior is off.  I started laughing hysterically because her behavior has been "off" for some time now.

She will also be entered into a prevention study involving oral insulin.  Of course she could get the placebo but . . .

Quietly Having a Meltdown

Glucose tolerance test set for the 10th.  She'll have to miss a swimming lesson AND I better not have a job starting before then.  No, they won't do it on a Saturday.  Seriously.  Do they really think that everyone can just drop everything?  If I were working there'd be no way I could take her.

I'm also mad about the swimming lesson because I know she loves it.

I was wrong about the timing - it's -10, 0, after drinking and then every half hour so will only take two hours and I can get her in at 7:30 (early morning!) so she won't have to go too long without eating.

Besides the sugar they will do another A1C, antibody testing (pray for low numbers!) and test her for another gene that could be protective.  Hopefully I have it and she'll get it from me!

Won't get results for 4-6 weeks though.  Just in time for her next TEDDY appointment at the end of October it seems.

Just got back from Baby's quarterly TEDDY appointment.  RG was 131 (half and hour to an hour after finishing a cup of orange juice) and A1C was 5.1  Looking good!  They told me that since she is positive for the one antibody she'll have to continue doing the quarterly draws even though normally she'd drop to twice a year once she turned 4.

This served to remind me why I don't want to move from the area.  I start thinking that maybe I'd have a better time finding a job if I were willing to move.  And then . . . well if we moved she'd no longer have the free monitoring of her blood sugar AND her connection to the Barbara Davis Center for Juvenile Diabetes.  Right now she's got it made in the shade should she end up developing diabetes.  Immediate access to all the latest research, products and support systems.  We move and it's all gone.