Langan Update and Hello to All

September 21, 2004

Hello everyone. I have been lurking but not posting much these past

few weeks. I have been following the news on all my favorite keto

kids and have noticed the number of new kids starting to diet. How

exciting that there are so many more kids out there who will

hopefully find that keto is the answer they are looking for!

I just wanted to update on my little one. She has now been

completely off of keto for 2 full weeks, after that 8 day rapid

wean. We have not seen one of her typical seizures since the first

night of the wean, although we keep expecting to wake up and find

that they are back. We have seen some very short partials here and

there in sleep but so far even those have been, knock on wood,

scarce. I finally put the scale away. In a bit of a panic the other

day when adding a new food, I pulled it out just to get an idea of

what I was giving her and it wouldn't come on. Maybe a sign from God

that I really need to put it away. I am still trying to keep things

healthy for Langan, but she is enjoying her new-found freedom with

foods. She finally had that Happy Meal last Saturday- ketchup

everywhere and she ate the whole cheeseburger. Her favorite thing in

the whole meal was the juice box- I guess I should be thrilled that

while most kids think cookies are a treat Langan thinks juice is, but

you know I still get nervous thinking of all those carbs!

We did a blood gas test yesterday and, for the first time since this

whole acidosis nightmare started, her bicarbs were NORMAL. The

nephrologist is very happy with the results and we will repeat in a

month. Her other levels were normal except for slightly low

creatine, but he is not worried about that for now. We are still

supplementing with bicitra but I am just so happy to have a normal

bicarb that I don't know what to do. It appears that the acidosis,

if it was pre-existing as it now appears, may have been a huge factor

in the seizures we were seeing. At least we are hoping so....

Langan's development continues to move forward, too, probably due to

the acidosis finally being under control. She is getting stronger

every day and now much prefers standing to sitting, which for a child

who several months ago didn't want to sit or hold her head up is

amazing to me. She is still too wobbly to stand without something to

grab onto and still hasn't figured out the whole walking thing, but

we are hopeful that if she remains stable that will come.

I just wanted to post an update and to let everyone know that we

think about you and these precious keto kids every day. I hope

everyone is well. We'll be lurking.... and praying for the best for

all of these great families!

, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04; weaned

due to severe metabolic acidosis, but keto kid at heart forever!

September 21, 2004

Hi , that's great news about Langan. I was wondering how she

was doing. We have started the wean with Kristan, she's on a 3.5:1

ratio since last Tuesday. So far so good, seizures vary, anywhere

from 10-20 a day and this is what she was doing at the higher ratio

too, so I know the seizures haven't increased on the lower ratio. WE

are going to do each ratio 3 weeks at a time. Kristan still doesn't

know how to eat solids all that well and I am hoping that once she is

off the diet that we she can tolerate baby jar food and practice more

solids that way and her speech and ot want to give her some chewing

bags to put in her mouth that contain soft foods to teach her how to

chew, but I can't do that while on Keto as she would be getting the

extra food from the chew bags. So much to do.

That is so awesome that Langan prefers to stand now. Kristan prefers

to sit all the time now, we are working on getting her into crawling

position, she doesn't like to extend her forearms and use them to

support herself.

I hope Langan continues to do well.

Satnam, mom to Kristan, 21 months

Keto kid since August 2003

> Hello everyone. I have been lurking but not posting much these

past

> few weeks. I have been following the news on all my favorite keto

> kids and have noticed the number of new kids starting to diet. How

> exciting that there are so many more kids out there who will

> hopefully find that keto is the answer they are looking for!

>

> I just wanted to update on my little one. She has now been

> completely off of keto for 2 full weeks, after that 8 day rapid

> wean. We have not seen one of her typical seizures since the first

> night of the wean, although we keep expecting to wake up and find

> that they are back. We have seen some very short partials here and

> there in sleep but so far even those have been, knock on wood,

> scarce. I finally put the scale away. In a bit of a panic the

other

> day when adding a new food, I pulled it out just to get an idea of

> what I was giving her and it wouldn't come on. Maybe a sign from

God

> that I really need to put it away. I am still trying to keep

things

> healthy for Langan, but she is enjoying her new-found freedom with

> foods. She finally had that Happy Meal last Saturday- ketchup

> everywhere and she ate the whole cheeseburger. Her favorite thing

in

> the whole meal was the juice box- I guess I should be thrilled that

> while most kids think cookies are a treat Langan thinks juice is,

but

> you know I still get nervous thinking of all those carbs!

>

> We did a blood gas test yesterday and, for the first time since

this

> whole acidosis nightmare started, her bicarbs were NORMAL. The

> nephrologist is very happy with the results and we will repeat in a

> month. Her other levels were normal except for slightly low

> creatine, but he is not worried about that for now. We are still

> supplementing with bicitra but I am just so happy to have a normal

> bicarb that I don't know what to do. It appears that the acidosis,

> if it was pre-existing as it now appears, may have been a huge

factor

> in the seizures we were seeing. At least we are hoping so....

>

> Langan's development continues to move forward, too, probably due

to

> the acidosis finally being under control. She is getting stronger

> every day and now much prefers standing to sitting, which for a

child

> who several months ago didn't want to sit or hold her head up is

> amazing to me. She is still too wobbly to stand without something

to

> grab onto and still hasn't figured out the whole walking thing, but

> we are hopeful that if she remains stable that will come.

>

> I just wanted to post an update and to let everyone know that we

> think about you and these precious keto kids every day. I hope

> everyone is well. We'll be lurking.... and praying for the best

for

> all of these great families!

>

> , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04;

weaned

> due to severe metabolic acidosis, but keto kid at heart forever!

September 21, 2004

Hi Would just like to say wow, your little girl seems like such a sweatheart and

has done so well with the diet it makes me more determined to put my son on it !

Deb - mum to Matt 2yrs old

langansmom tuckerwing@...> wrote: