Langan's Troubles Continue

[Guest guest]

Hello everyone. Just wanted to post an update on Langan now that we

have that stupid bug off of our home computer....

Despite taking in massive amounts of sodium bicarb, her bicarb

levels were still at 10 on Friday. We lowered her ratio to 3.5

(from 4:1) and they added bicitra- 5cc 3X a day, both changes on

Saturday. We are getting blood levels again tomorrow and then are

heading to Cincinnati to meet with a nephrologist to see if they can

figure out what is up with the bicarbs and to check on her kidneys,

etc to see if something is out of whack there.

It has been a TERRIBLE seizure day. = ( She started off by having

a big fat full blown awake seizure (only her second ever) while I

was opening my Mother's Day gifts. (Her other one was while her dad

was opening his birthday gifts- maybe she has something against

gifts....) Since the seizure, she has mainly slept and whined all

day. When she's not sleeping or whining, she is having what looks

like simple partials. Ugh. I checked her bhb's at 5pm (when they

are usually highest) and they were only 3.9. Her glucose was 72,

even though it was 5 hours after her last meal! The neuro said that

the bicitra has carbs, and it tastes nice and sugary, so I don't

know if it's that, the change in ratio, increasing bicarbs,

coincidence, or something else. Ugh. So many things changed at

once, but we didn't have a choice with her bicarbs being so low.

Here's another question for the experts here. I am convinced that

this bicarb issue is a clue to what is going on with her. We did

have metabolic tests done last year but I remembered today that

although they said the amino acid tests were " normal " they also said

that she had slightly elevated acids. The genetics doc wrote it off

as dietary but I wonder- it was well before keto. And the weekend

before we started keto, I checked Langan's urine ketones just to

practice and she had ketones! I told the dietician and she wrote it

off as a result of the sniffles that Langan had over the weekend.

Now she's overly acidic and we can't get it under control????

Something tells me these things are related and we need to follow

the trail. I did some research and read about the amino acid

disorders. I know they test for PKU at birth, but I read that it

can develop later. AND I read that it can cause a rash. Well,

Langan has had this rash that comes and goes FOREVER and no one has

been able to figure it out. Is this too obvious? I'm going to call

the neuro in the morning and give her this info but I wanted to pass

it by you guys. Any thoughts?

Thanks!

, mom to Langan, 21 months old and keto kid since 11/03; med

free since 4/2/04 but fighting seizures AND metabolic acidosis but a

real trooper and such an inspiration!