/ from /Langan

[Guest guest]

,

First let me say YAY!!!!!!!!!!!!!! I am so excited about the

disappearance of seizures for ! I know if you are like me you

are waiting for the sky to open up and all hell to break loose

again, but I really believe that the carnitore and all of your

endless tinkering with the diet was just what needed to get

rid of those nasty things. That is soooo great!! I have been

thinking of you guys a lot and noticed that you hadn't posted in a

while so I thought maybe you were away again. I am glad to see it

is b/c you are out and about more now that those nasty things are

MIA. Good for !

The rest of your message really touched a nerve with me. I also

wonder endlessly where Langan will be in the future and

whether " delay " will turn into something else. I guess it's a demon

we all have to deal with when our kids aren't following the

developmental program. I definitely have days when I am more upset

than others. One friend refers to what we go through as less of a

roller coaster and more of a " teeter totter " and I have to agree.

It is much more straight up and down than any rollercoaster. On the

good days, I look at Langan and see her smile and tickle her to make

her giggle that cute little laugh of hers, and I see her look at me

when I walk in the room, and she puts her arms up for me to get her,

and I really think that all is right with the world. On my bad

days, I look at her and see a 2 year old who is not walking or

talking and I wonder how she'll do in the world and if she'll ever

be able to live independently and have a job and drive and date and

do all the things I took for granted. I go from wondering what

college she might go to all the way to wondering if she'll be able

to be mainstreamed in school or have to go to a special school.

Talk about highs and lows! I try to keep perspective, but you are

right that it is hard. I try to focus on the improvements, and

believe me I know how fortunate we are that she is moving forward

and not backward, but at the same time I want MORE and FASTER. But

in the end I have to recognize that she's going to do what she's

going to do on " Langan time " . So I just keep pressing on, bugging

the doctors endlessly, working with her therapists and trying to

make therapy fun, and digging for answers, always digging for

answers. All that to say that I know where you are coming from.

And we're right there with you. I refuse to give up hope that

Langan can beat this mess and " catch up " , and I know that you are no

quitter either. That is clear from the battle you have already

waged for him. At the same time, I try to be realistic so I don't

set myself up to be crushed. It is a fine line and I am not very

good at walking them, but I am trying. That's what is so great

about groups like this- we can lean on each other in the tough times

and be inspired by each other in the good times. It's why I can't

let go of this group even though technically we are no longer a keto

family.

As to Langan, she is still on that tiny amount of trileptal. We

almost bit the bullet and increased it when we started seeing more

partial seizures, but we held out and they dissipated again so we

are staying put. Part of me is tempted to drop it completely and

see what happens, but I don't want to mess things up, so we are

staying put. Our neuro did increase carnitine to 660 (2 pills) a

day but wants us to stay there, so we will see if that helps. She

just thought that if Langan does have something metabolic going on,

carnitine is beneficial, so we are staying with it. Now if only I

can get insurance to cover it....

I emailed our nephrologist to tell him about Langan's improvements

and the seizure control and asked if the acidosis could have had

this much impact. His answer- absolutely. He says that acidosis

has a dramatic effect on development, growth and every organ.

Soooo, I am hoping we have found an answer to at least some of our

problems. Time will tell, I suppose. And you know how patient I

can be.... LOL

Sorry this is so long! I miss our weekly chats! PLEASE hug sweet

for me and know that we are down south thinking of you guys

and wishing much health, development and happiness!!

, mom to Langan