bedtime snack???

[Guest guest]

I am a bit confused here. Could someone explain to me what kind of

a snack you would add at bedtime to help the diet keep working? I

have suspected from day 1 that Mike needs something before bed since when

he goes to sleep he can be at 8 or even 16 ketones but after eating nothing

he wakes up at 4?? I could never figure that out can any one help??

Sheri Hester wrote:

I would seriously, seriously consider sticking

with

weaning the pheno... it's known to become stronger in

children on the diet and it did with my son. I would

change back to whatever you were doing with the diet

pop - and not change anything diet wise so you're only

dealing with the one variable of weaning pheno. If

you do one thing one week, another thing the next

week, and then something happens you really don't know

what the cause is.. and drugs can take a couple of

weeks to cause a reaction.

It's hard, I know, but my son acted drugged -- slept a

lot, fell asleep at school, would stare and not talk

-- for about 2 weeks after his final wean from pheno.

It made me realize just how powerful that drug really

was.

Just my experience, but I would think 60mg pheno is

too much with the diet. IF the seizures are gone

except for night, it may be all you need to do is add

a night time snack so that the diet keeps working

overnight.. I've heard of other people on this list

make adjustments for that reason.

Hope things get better!

Sheri - mom to Tyler, 9 and Sara, 6

--- cindy atler wrote:

> Hi everyone,

>

> Ally's been on the diet since 4/01. Not seizure

> free, but

> improved. Only has seizures in sleep. Decided to

> wean

> phenobarb starting 11/28/01 (I didn't think it was

> helping

> her for various reasons). We reduced from 60 to 45mg

> (she

> only takes it at night) w/o a problem. After 2

> weeks,

> reduced again to 30mg. Within 2 days she was

> drooling.

> Increasingly slower speech and difficulty with

> balance.

> Then on Saturday (5 days after decrease) she had a

> tonic

> clonic seizure at 7pm. Hubby and I decided we

> weren't ready

> to ride this out yet, so we icreased her back to

> 45mg. The

> next 2 nights she again seized aroung 7pm. Increased

> her

> back to 60mg.

> Also gave 0.5mg clonazepam last night (the 3rd

> night of

> tonic clonic in PM). She still acts drugged today, I

> thought the clonazepam would have been worn off by

> now.

> During the day, she acts "post ictal" or

> "subclinical"=

> drowsy, slowed speech, ataxic, drooling. Do you

> think this

> is still from the decrease to 30 mg?

> Nothing else has changed, except we changed her to

> stevia

> sweetened tea(no additives) from diet pop about a

> month ago

> (before the weaning). Should we continue to hold

> off, give

> her more time, or should we give her more meds? The

> neuro

> wanted us to add Keppra before weaning, which I

> didn't. I

> can add it now, but it takes a while to work (he

> said about

> a month to get to the right levels). She is also on

> Topamax. Her ketones remain large.

> Your comments, support, and ideas would be much

> appreciated!

> Thank you

>

>

> __________________________________________________

>