1st day of no seizures for stella

[Guest guest]

I had to email everyone and let them know after a month of over a thousand

seizures stella had her first day yesterday seizure free.

I have no idea what was different, she ate all her food willingly, drank

about a gallon of water Saturday, took her meds, carnatine vitamin etc. But

had a wonderful day, it's days like yesterday that keeps you smiling for

weeks ahead. I do hope this continues. It's amazing to think this time

last week she had over 50 drop seizures. Only 4 days ago she was back to

having tonic clonics again over 12 in one day. YIKES. I don't like reading

past diary entries.

She's back to a 4-1 ratio though, but the valium is gone. Her lamictal was

raised slightly too, but hey if this is the sign of days to come i'll take

the increase of lamictal (for a while...)

amanda

--

http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143

>

[Guest guest]

Hello ....I just read your email and I'm amazed and excited for you

and your family. This is what keeps me going from day to day. Yesterday

my daughter had at least 12-15 head drops. It was one of the bad days and

she's been on the diet for 2 months now and just been weaned off the

depakote. I'll think good thoughts for your continued luck and hope some

spreads our way. Can you tell me how long you've been on the diet? It

sounds similar to my daughter, so I thought I would ask. My daughter is 6

and has periodic spasms for the last 2 years for no apparent reasons we've

found on any EEG or MRI's. We've tried different meds and nothing seems to

stop the head drops or the small spasms. She's now starting Kindergarten

in a week, so I'm very nervous. She's quite stuck on me and doesn't want

to go. It's only a half day, but she will need to go to daycare afterwards

so I can go back to work. I also have a 4 year old son that will go into

daycare and I need to pay for that. They need to be around kids. I'm

having such difficulty with this diet and stories like yours are only what

keeps me on this diet. It's sooooo hard!

Congrat and thanks for the good news! Sheridan's Mom

At 12:38 PM 8/16/2004, you wrote:

>I had to email everyone and let them know after a month of over a thousand

>seizures stella had her first day yesterday seizure free.

>I have no idea what was different, she ate all her food willingly, drank

>about a gallon of water Saturday, took her meds, carnatine vitamin etc. But

>had a wonderful day, it's days like yesterday that keeps you smiling for

>weeks ahead. I do hope this continues. It's amazing to think this time

>last week she had over 50 drop seizures. Only 4 days ago she was back to

>having tonic clonics again over 12 in one day. YIKES. I don't like reading

>past diary entries.

>She's back to a 4-1 ratio though, but the valium is gone. Her lamictal was

>raised slightly too, but hey if this is the sign of days to come i'll take

>the increase of lamictal (for a while...)

>

>amanda

>--

><http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143>h\

ttp://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143

> >

>

>

>

>

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[Guest guest]

yeaaaa go Stella!!!!!!!

Ally

1st day of no seizures for stella

> I had to email everyone and let them know after a month of over a thousand

> seizures stella had her first day yesterday seizure free.

> I have no idea what was different, she ate all her food willingly, drank

> about a gallon of water Saturday, took her meds, carnatine vitamin etc.

But

> had a wonderful day, it's days like yesterday that keeps you smiling for

> weeks ahead. I do hope this continues. It's amazing to think this time

> last week she had over 50 drop seizures. Only 4 days ago she was back to

> having tonic clonics again over 12 in one day. YIKES. I don't like

reading

> past diary entries.

> She's back to a 4-1 ratio though, but the valium is gone. Her lamictal

was

> raised slightly too, but hey if this is the sign of days to come i'll take

> the increase of lamictal (for a while...)

>

> amanda

> --

>

http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143

> >

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

[Guest guest]

,

I'm so happy for you!!!

Stella keep going like that!!!!

We are waiting for the same for aël,We can hope a bit more....thank you

to share it!

Carolyn,aël's mum

1st day of no seizures for stella

I had to email everyone and let them know after a month of over a thousand

seizures stella had her first day yesterday seizure free.

I have no idea what was different, she ate all her food willingly, drank

about a gallon of water Saturday, took her meds, carnatine vitamin etc. But

had a wonderful day, it's days like yesterday that keeps you smiling for

weeks ahead. I do hope this continues. It's amazing to think this time

last week she had over 50 drop seizures. Only 4 days ago she was back to

having tonic clonics again over 12 in one day. YIKES. I don't like reading

past diary entries.

She's back to a 4-1 ratio though, but the valium is gone. Her lamictal was

raised slightly too, but hey if this is the sign of days to come i'll take

the increase of lamictal (for a while...)

amanda

--

http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143

>

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

I spoke too soon, she woke this am having bad tonic clonics in her sleep.

Grrrr.... We had to give her the diastat as they were happening evey 15mins

after she'd drop back offf to sleep. Keytones are still high, but we

couldnt' check her glucose as she had already had the seizures. I'm hoping

the diastat will keep them at bay, but what a shame. She did have 2

wonderful days though, they'll keep me going for a while.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

[Guest guest]

I'm so sorry for little Stella this morning. You didn't speak too

soon, though. After what she has been through the last month, two

siezure free days are very newsworthy. I take them as a good sign.

Hang in there. My best hopes are with you.

Gretchen

> I spoke too soon, she woke this am having bad tonic clonics in her

sleep.

> Grrrr.... We had to give her the diastat as they were happening

evey 15mins

> after she'd drop back offf to sleep. Keytones are still high, but

we

> couldnt' check her glucose as she had already had the seizures.

I'm hoping

> the diastat will keep them at bay, but what a shame. She did have

2

> wonderful days though, they'll keep me going for a while.

>

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.

[Guest guest]

Hopefully it is a positive reaction to the valium going bye byes ,

allowing the diet control to kick in properly - 's seizures finally

stopped approx 5 weeks after his very last diaz dose, so if she had any kind of

intolerance or toxicity issues happening, it may have been taking a while to

begone...

If it is from this, do not to be toooo discouraged if you see any seizures on

and off, waxing and waning during a final benzo wean is fairly common, but maybe

this is 'it' for her now - everything crossed for you that this is the case. And

if it is anythng to do with the lamictal increase, well whatever it takes

basically....Enjoy

----- Original Message -----

From: and Stansfield-lyons

I had to email everyone and let them know after a month of over a thousand

seizures stella had her first day yesterday seizure free.

I have no idea what was different, she ate all her food willingly, drank

about a gallon of water Saturday, took her meds, carnatine vitamin etc. But

had a wonderful day, it's days like yesterday that keeps you smiling for

weeks ahead. I do hope this continues. It's amazing to think this time

last week she had over 50 drop seizures. Only 4 days ago she was back to

having tonic clonics again over 12 in one day. YIKES. I don't like reading

past diary entries.

She's back to a 4-1 ratio though, but the valium is gone. Her lamictal was

raised slightly too, but hey if this is the sign of days to come i'll take

the increase of lamictal (for a while...)

amanda

--

http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143

>

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Thanks susan, it's so helpful having other parents out there who care.

amanda

On Wednesday, August 18, 2004, at 07:50 PM, Hill wrote:

>   Try not to be too down about it - easy to say I know, but

> that seizure free stretch showed you she is capable of doing it, and

> so can do again.

>   It may well be a benzo bump in the road, it  does happen - trust me

>

>   Crossing everything they peeter out again - will look out for

> updates,

>

>  

>

>     Re: 1st day of no seizures for stella

>

>

>     I spoke too soon, she woke this am having bad tonic clonics in her

> sleep.

>     Grrrr....  We had to give her the diastat as they were happening

> evey 15mins

>     after she'd drop back offf to sleep.  Keytones are still high, but

> we

>     couldnt' check her glucose as she had already had the seizures. 

> I'm hoping

>     the diastat will keep them at bay, but what a shame.  She did have

> 2

>     wonderful days though, they'll keep me going for a while.

>

>

>     --

>     -mom to Stella, 5years old, started keto diet May 10th 2004

> still

>     waiting to be seizure free.  Also on Lamictal, epam and

> Diamox.  Anisa

>     is almost 10 and a happy healthy girl.

>

>

>

>

>

>

[Guest guest]

,

This brings to mind what happened to Rohan after a depakote wean.

About a month after the wean he had seizures in his sleep. They were

about 20 mts apart but he was OK when he was awake. His ketones

happened to be high as well. We didn't do anything about the ketones

but I feel he'd have been better with lower ketones. He had two very

bad nights like this and then his dr. put 3/4 of the dose of depakote

back and sz petered out.

Later on we managed to wean the depakote but had to lower the ratio

at the same time too. He had withdrawal sz but not like the regular 20

mt sleep sz.

Hope things improve as you get further away from the diazipam.

Saro

> Re: 1st day of no seizures for stella

>

>

> I spoke too soon, she woke this am having bad tonic clonics in her sleep.

> Grrrr.... We had to give her the diastat as they were happening evey

15mins

> after she'd drop back offf to sleep. Keytones are still high, but we

> couldnt' check her glucose as she had already had the seizures. I'm hoping

> the diastat will keep them at bay, but what a shame. She did have 2

> wonderful days though, they'll keep me going for a while.

>

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004 still

> waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

> is almost 10 and a happy healthy girl.

>

>

>

>

>

>

[Guest guest]

Try not to be too down about it - easy to say I know, but that seizure

free stretch showed you she is capable of doing it, and so can do again.

It may well be a benzo bump in the road, it does happen - trust me

Crossing everything they peeter out again - will look out for updates,

Re: 1st day of no seizures for stella

I spoke too soon, she woke this am having bad tonic clonics in her sleep.

Grrrr.... We had to give her the diastat as they were happening evey 15mins

after she'd drop back offf to sleep. Keytones are still high, but we

couldnt' check her glucose as she had already had the seizures. I'm hoping

the diastat will keep them at bay, but what a shame. She did have 2

wonderful days though, they'll keep me going for a while.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.