help and suggestions needed please!

July 14, 2004

hi,

I am starting to read and post here more often. I was able to reduce the

foam in Carlie Jae's formula by pulsing it in the blender. I have put

using carrots off til later. Carlie Jae is seven now and not as mobile as

other kids. She is now receiving 1125 calories and weighs 18.4 or

approx 39 kg. Carlie Jae's ketones are 4 during the day and 8 in the

evening.

Where my concern is is that she is having seizures everyday.

She has them after she goes to sleep. I hear her cry out and it is a tonic

clonic she does this several times until about midnite. after that i do not

know if she is having anymore because i just cannot stay up.

Then in the morning around 9:30 am she has two more tcs lasting about two

minutes or so. the shaking of her body is really intense and Carlie Jae

wants to sleep usually about a halfnhour later. she sleeps for an hour

and it is a deep sleep. she then is awke until about 2:30 pm and then wants

another nap which is an hour long or more.

HMMMMMMMMM?

I am not sure what to do? she is taking 30mgs of frisium/clobazam

a day

Thanks

Robyn mom of Carlie Jae 7 years, who was born with cerebral atrophy to her

frontal and temporal lobes. Global dev delays, g-tube fed and cannot walk

yet! . She has also cental nervous system irritability and intractable

seizure disorder but mostly under control with the ketogenic diet and only

one AED. Carlie Jae has been ketofed since march 2001

Gorgeous red curly hair and a smile that would melt

eventhetoughestofheartsthetoughestofheartsthetough

estofheartsthetoughestofheartsxxx

July 14, 2004

Robyn,

I would not be surprised if the frisium is the culprit. Sleep seizures

often hang on and are of the last to go. But, often they are due to either

too much med or the presence of a med. We have battled the sleep seizures

with our daughter Shan. There was a time on the diet when she would have

15-20 seizures while trying to fall asleep and then a seizure every 3-5

hours during the night. She was on 1 med. We began giving melatonin to

help her fall asleep quicker. We saw immediate improvement to where the

sleep seizures dropped to 1-2 when trying to fall asleep. We weaned the med

she was on. When we got down to a very low dose we suddenly saw a

tremendous improvement. The sleep seizures during the night reduced and

actually began to disappear. We weaned the med completely and tonic clonics

came back with a vengance every 3-4 hours. We gave that last small dose

back and have stayed put for over the last 2 years. She still has

occasional tonic clonics in her sleep but we have been going 2-3 weeks,

sometimes a couple months, without detecting a seizure. Shan's seizures

come from her rt. frontal lobe. She is presently on a small dose of

trileptal which she takes only at night. This drug is suppose to be taken

twice a day due to its 7 hour half life, but since we only needed it at

night and we wanted to reduce the side effects as much as possible we opted

to experiment (doctor said it wouldn't work) and try giving it 1 hour before

bed. It's working. A couple others on this list under the guidance of

their doctors have tried giving it at night only and it is working for their

children. I hope something I've shared can be of help to you.

Rhonda (mom to Shan, age 9, keto/atkins over 2 years)