Langan Update- Wean Almost Complete and Ketones Are Crazy!

September 6, 2004

Hello all. We are in day 7 of the 8 day wean and so far, knock on

wood, Langan has been rock solid seizure wise. She had one Tuesday

night (the day we started the wean) and a partial on Friday.

Period. She is loving all the new food and gets so excited in her

highchair that it melts my heart. At the heart of this acidosis

problem, when we didn't know it was there, the highchair was the

nightmare place- she screamed bloody murder and threw everything off

the tray and refused to eat. It is so nice to see her giggling and

doing the " happy dance " in the chair now.

We are basically not even on keto at this point. We have unlimited

meats, fruits and veggies, have replaced the cream with whole milk,

and ad lib the fats, and today started 1/2 a car exchange with each

meal. I still can't put the scale away- I've been putting her bowls

on it to put the food in even though it doesn't matter at this

point. There is that part of my brain that still thinks that I need

to write down the weights of everything, just in case....

Last night, we checked her BHBs several hours after her last meal.

0.9- which I thought made sense b/c she has been eating so much

fruit and veggies and b/c taking the cream away was a major change

in the fat amounts. Anyway, she woke up several times crying last

night. I actually think she was hungry, but I can't be sure. I

checked BHB when she woke up and it was 3.1!!!! That makes NO sense

to me. Any ideas? Also, I checked blood glucose this morning and

it was 81. Does that make sense? I guess I'll need to leave this

to the neuro to decipher, but I am really going nuts trying to

figure it out!

Take care! I hope all is well with everyone!

, mom to Langan, 2 yrs old and keto kid since 11/03; med free

for 4 months but now on small dose of trileptal as we wean keto due

to severe and persistent metabolic acidosis

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