Better

Baby had her TEDDY appointment this morning. RG 85 after a breakfast of oatmeal and milk. A1C was 5.3. Up .3 from her last test but the nurse said it was normal in winter. I was SOOOOO proud of Baby during the blood draw because she sat in the chair by herself, not in my lap, and did the whole thing by herself. No tech holding down her arm or anything. She didn't like the hugger (tourniquet) the most. Get this she was 42 inches (same as the doctor appt) and 45.0 lbs. 3lbs less. They use a digital scale and not one of the old fashioned black weight ones. So I'm betting the TEDDY scale is more accurate and I don't think she lost 3 lbs in the last two weeks.

I was talking to the nurse while waiting for the A1C results. I told her about Dad's comments about not being able to have so many carrots, corn and peas etc and not only did she agree with me that it was false but would be hazardous to her health. She said that it's one of the traps parents fall into, cutting sugar down too much, and that it stunts the kids growth - and actually causes harm to the brain! Type 1 is NOT type 2!

She asked me if I'd finished reading the book they gave me and I had to admit that I'd only skimmed the second half because I was getting too upset/worried/stressed etc. She told me that the unfun part of her job is shaking parents out of denial. That right now they (me) are standing at the edge of the cliff and waiting for something to push us over or pull us back. While Miranda might not develop diabetes in the next 5 years I should be thinking "when" not "if" because with a positive in all 3 antibodies it's pretty certain. 

I told her my fears about the school system and the stories I'd heard about some pretty scary school nurses and she relieved my fears on that score at least. She said that since Baby is in the study that she will automatically become a patient of the Barbara Davis Center and that if I'm having any problems THEY will take on the school for me.

I also talked to her about my feelings of "I did or didn't do" to cause this and that while logically I know that even if I did I couldn't have known (hence the study) and she pointed out that the environment is larger then just what I do - other kids/people/animals can all be the carrier and that until they KNOW what I can't be sure there was anything I could have done to prevent it. We also talked about stem cell research and she was happy that I understood that while we may come up with something to replace the stem cells in the pancreas until we stop the antibodies they will just get wiped out again.

I suggested that there should be some kind of support group for the parents with positive antibodies. They have them for the parents of kids who HAVE diabetes but not before and that cliff is hard to stand at all the time.

So a lot got talked out (she also said her son has been looking for work for a long time too so understood that stress) and I'm feeling better. It was good to talk to someone that understood ALL the aspects of what was going on with me without having any preconceived ideas of how I SHOULD be handling everything (no more carrots!).

Still have an emotional overload headache though.

Will This Ever End?

I was looking at the Parker Rec online schedule to see what time Baby's Kids Kulture class starts tomorrow.  It's a free once a month thing for littles but you do have to register.  I'd signed up for them but wanted to double check the time.

It says I have a class that has already started.  Made no sense to me since her swim lessons didn't start again until Monday.  They've always been two weeks on, one week off, two weeks on etc.  You have to sign up for the next class a week out and you don't know what level your kid is going to need to sign up for until the end.  That gives you a couple days to sign up for the next session.  Makes sense right?

And I'd signed her up to repeat Minnow because at the end of the first week of her private lessons her teacher told me that Minnow would be cake but she'd struggle with Shark because she needed to work on her endurance.  The fact that she'd had an ear infection and was fighting a cold wasn't helping so I just went with the Minnow - and the timing worked with my UI checks and I have to budget in that way.  Made things tight then but I got help from an outside source and was able to make it.  Even managed to get a haircut before my interview so felt better about myself.

Back to the already started class.  Yep, it was her swimming class.  My screw up because I wasn't looking at a calendar and just signed her up not noticing that THERE WAS NO WEEK OFF BETWEEN CLASSES!   Yeah I just paid for a week of classes she didn't get to take.  Oh and there isn't a week off after this either so I have to get her signed up for the next session this weekend.

I hate feeling like such a screw up!

Oh and while I've been very proud of Baby's choices lately (wanting the plain apple slices instead of the candy/carmel apple) I'm getting concerned because it's becoming a fight to get her to eat breakfast and she's started talking about CALORIES!  At first I thought it was just a word she'd picked up off of hearing an adult conversation but when she was looking at the nutrition box on her cereal (mini wheats - I like them for the high fiber count and they help her poop) and pointed out the calorie information to me along with telling me the number I knew it was much more. 

I know that if she actually does develop Type 1 diabetes she's going to have to count carbs for the rest of her life but I don't talk calories with her.  I talk healthy foods and treats and that treats aren't had every day.  She still has halloween candy from last year for pete's sake!

Thanks for all the comments!

To be clear the genetic component is the one part that I don't have a lot of guilt about - except for obviously my choice in sexual partner - because I know she didn't get the gene from me.  I don't have it and no one in my family going back at least 3 generations has ever been diagnosed with Type 1.  Type 2 yes on my dad's side.

It's more along the lines of the TEDDY study.  Trying to figure out what triggered the genes to act up in the first place.   Something in her environment caused her body to go into overdrive and start fighting itself.   When she started out (no antibodies acting up) her chances were only 14%.  1 in 7 with the gene actually develop the disease in their lifetime.  With the first antibody her chances rose.  The latest testing was more extensive so we know that her odds are now greater then 50% and within the next 5 years.

So what was it that I did, didn't do etc that other parents didn't do and did that made the difference?  And what can I do that will put the odds back in her favor?

She's not on any medications yet as she actually has a functioning pancreas now but they were talking about the possibility of putting her on oral glucose as part of a trial (which means she could have the placebo) to see if it will help prevent the disease.  Her next TEDDY appointment is in two weeks so hopefully I'll have a lot more answers then.  I'm going to call the doctor tomorrow (or Tuesday since I don't know about office hours with the holiday) to see if I can get answers sooner.

I still have to test her blood sugar a couple times a month (daily if she's sick) and she'll have another glucose tolerance test in 6 months.

A Mother's Guilt

I know it's not true.  Or rather I think it's not true.

But I can't help but feel that I am in some way responsible.  There had to be something I could have done, should have done, need to do now that would stop all this.

I just wish I knew what it was.

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.