Re: help and suggestions needed please!-Robyn

[Guest guest]

Is there any tie in with her clobazam doses peaking as far as when

seizures are the worst? We always had to split most meds (benzodiazepines in

particular) and keto meals. When ketones were higher was the riskiest time

to have these meds peaking - it was just complete overload for .

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

> 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