Re: to wendy from carolyn

[Guest guest]

Hello ,

I'm still reading some mails but aël is not anymore on keto diet but

on atkins diet, I try and it is easier for him because of his acidosis, I can

ajust better the diet when he's sick....

I read your mail and I want to tell you how much I've got compassion for you

and your little girl, life is so hard for these children and Langan is the

proof she can be so strong and recuperate so quickly . I need this kind of

evidence to continue our life too because it is too hard to see continuously

your angel seizuring.

ël is very bad at the time, he's on drip at home because I didn't want

to spend our lifes at hospital but it is difficult to live too...

I'm thinking of you and hope the best for Langan, I'm thinkig a lot to

Kristan and Satnam, I'll write later on when Nath will be a bit better...

Big hugs to her

Carolyn, aël's mum from France

Re: , how is Langan doing?

Satnam,

Thank you so much for checking on us. I am so happy to hear that

Kristan is making progress even with the seizures. Are you still

weaning? How far have you gone? I hope those nasty seizures go away

SOON!!

Langan is, today, doing absolutely wonderfully. She is happy and

progressing every day. She is now really into getting into the " bear

stance " where she is standing on her hands and her feet. She can't

figure out how to move from there so she moves her feet forward and

keeps her hands where they are and winds up doing a forward tumble.

It is too cute. We were on vacation in Florida earlier this month

and she started crawling- not consistently and she couldn't do it

when she thought about it, but when we put something she wanted out

of reach and she just reacted, she would get on all 4s and go get

it. I cried, of course. She is also still standing and working on

the balance to take steps on her own.

Now for the bad news.... On our return trip from Florida, I noticed

that Langan felt really warm on the plane. I didn't think much of it-

just mentioned to my husband that we needed to take her temp when we

got home. But she was laughing and playing, so we didn't worry.

Right when we landed, I took her to the restroom to change her

diaper. She was laughing and playing as we went in. I laid her down

on the changing table and all hell broke loose. She started

convulsing- something she has never done before. Her seizures have

always been in her sleep and have always been a calmer, rhythmic

movement. Anyway, I picked her up to see if she would stop but she

didn't. After 4 minutes, I gave her diastat. It wouldn't stop. She

was turning bright red. I ran and found my husband and we got help.

The airport med team arrived and a doctor came up and they put her on

an oxygen mask. They called an ambulance and had it pick us up at

the gate. They gave her valium on the ambulance- twice- but still

she continued. Her heart race was 190+ all this time. People in the

airport were crying. It was so unreal. We got to the hospital and

they got an IV on her and she continued to convulse. Her temperature

was 103.5. The EMT, a big burly fireman, came and hugged me, crying

like a baby. The security guard at the ER brought Langan a teddy

bear, tears running down his face. I can't tell you how many total

strangers with crises of their own came into our little area of the

ER to comfort us. Finally, after 2 hours, they got the convulsions

to stop. But she was still seizing. She was very rigid and her eyes

were darting all over. They brought her back for a CT and then,

after another 30 minutes or so, she finally stopped. She would jerk

here and there but nothing like before. When she " came to " , she was

strapped to the ER table, totally naked, cold towels all around her,

oxygen mask on her face, EKGs all on her chest, IVs in her arms. She

just looked around and tears streamed down her face. It was the

moment when I realized that we had NOT lost her. Until that minute,

I really thought she was gone. They did a spinal tap to rule out

meningitis, and lots of other testing- all normal except for the

elevated white count which indicated she had SOMETHING. It was a

nightmare. Early the next morning, we were allowed to go home. She

was, at that point, in fine spirits, laughing and sitting up and

playing. We held our breath to see what skills she would lose, but

we were so happy to have her ALIVE that we really didn't care. She

stayed up all of Wednesday, playing and happy as could be despite the

fever. We increased her trileptal dose and the neuro put her on 5

days of ativan to get her past the fever without another crisis. She

slept all of Thursday and Friday and then woke up Saturday and has

been her old self ever since. I know it is still early, but so far

she has proven to be a real miracle child. She is doing all of the

things she was doing before and learning new skills each day. I am

so amazed by her powerful spirit. To call her a " fighter " really

doesn't cover it.

Anyway, that is what is up with us. I would have posted about it,

but we have really been waiting to see what happens. I can't imagine

ever flying with her again- what if it had happened 15 minutes

earlier??? And I don't know when I will ever really relax again. It

was so unexpected. And soooooo horrible. But for now we are just

enjoying her and appreciating every second with her. Life can be so

fragile.

I hope all is well with you. Didn't mean to be a downer!

Hugs to Kristan!

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

weaned due to persistent metabolic acidosis, but keto kid at heart

forever.

>

> Hi , I've been thinking of you guys. How is Langan doing?

Lot

> more of walking I hope and NO seizures.

>

> Kristan is doing ok, the wean is going well, we are to start 2.5:1

> ratio today, but her dietitian hasn't gotten me the new recipes

yet,

> I hate it when she makes me wait! Still having seizures, everyday

is

> different, 5, 10, 15 or 20 a day. She is keeping up with her

> vocalizing, which we are so happy with and I have noticed her

trying

> to take a bit of weight on one leg, it's hardly noticeable, but I

can

> tell as I work with her on this and am hoping she will start to

take

> more weight soon on both legs, right now her legs just buckle when

> you try to stand her without the leg splints.

>

> Hope all is well. Take care.

>

> Satnam, mom to Kristan, 22 months

> Keto kid since August 2003 and currently weaning from the diet

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