Tuesday, May 31, 2011

Endo appointment

I spent a couple of hours last night trying to download the reading from DD#4's Optium Xceed meter. The Copilot works great to give an overall view of what the BGLs are doing. But the meter didn't what to talk to the PC and I had to reinstall thedriver software. I finally got some lovely printouts (graphs, pie charts, etc) to show the doctor.

Well I was expecting good things from today's appointment. I wasn't disappointed, thankfully. Hb A1C 5.3 yay:) I feel like I have passed a test but really all it is is the appropriate treatment for my daughters rare condition is working effectively. We have tweaked the glibenclamide (glyburide) dosages a little since last appointment to 2.75mg breakfast, 3.75mg lunch and 2.75mg dinner. The increased dose at lunch seems to cover lunch and afternoon tea better than the 3 equal doses we had previously being using.

It seems so weird to be thankful that F has a rare genetic disease one little Arginine peptide changed to a Histidine at the 201 codon but it has made the management of her Neonatal diabetes easier.

I also found out that DD#3 thought that her sister didn't have diabetes anymore. The new treatment certainly isn't a cure but is a miracle. Still praying for a cure for Type1 and the monogentic forms of the disease.

7 comments:

Cath said...

My goodness what a huge amount of numbers and letters and genes and ...stuff... you have to think about Mel.

So glad that things went well at the appt.

Wish we could sit down for a cuppa.

Helen said...

Not much of that meant much to me but I'm glad you are happy! I do understand the anxiety about the specialists appointments though - so much.

Jules said...

that a1c is freaking perfect!!! congrats i know it isnt a cure, BUT a definite repreive and miracle from the grind of type1. the fact that theres a much much better treatment than insulin and its working so well. glad the appointment went so well. did you ask about a loaner cgm too? they havent called me. grrrr. typical.

Jules said...

oh , theres a new type 1 diagnosis, baby 14 weeks. maybe you could contact her?

hosting said...

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simone r said...

I didn't understand any of that, but I'm pleased for you!

Christy of My 2 Sweet Babies said...

I understood it all and it is amazingly awesome! I actually got told at our last endo visit that Andy's 4.9 was too low. We see her again in a couple of weeks. Have no clue what the A1C's will be this time. With all the lows back in Feb/March, I've been running the kids in the mid 100's lately. Probably going to be a high 5 this time. I got a little spooked. Oh, well, like you said it is still a miracle, even if it's not a cure.