Re: Keto-Diet 1 month now.

[Guest guest]

Viola,

How very frustrating--I have also read a lot of posts regarding how

depakote can interfere with a child's body to maintain sufficient

ketones on the diet. How much depakote is Caden taking daily?

was on depakote when she began the diet 3 months ago at

1125mg/day and we began weaning 125mg/week until we were down to the

last 375mg and then weaned 125mg/two weeks. She has been off

depakote for 3 weeks and still seizure free. We will wean her from

the 125mg Keppra she is on next week. Have you called your neuro to

discuss Caden's seizures and your concern that depakote may be the

culprit? How long after initiating the diet did your neuro want to

wait before beginning to wean depakote? Perhaps its time to

negotiate this; we do a lot of negotiating with our neuro--ha ha!

ne

>

> Hi my son Caden has been on the Keto diet for about a month now.We

> have seen some decrease in the seizures, but still having some

> everyday, i hoping its his meds that are interfering with the

diet ,

> he is on Depakote, ive heard that this is not a good drug with

the

> diet. Hope his doctor will try to take him off soon to see if

there

> is a improvment.If you dont see the seizures stop pretty quickly,

is

> this the best they are going to get , iknow we have to do some

fine

> tuning still.Was wondering the longer you work with diet the

> seizures will get better or you have abetter chance of them

> stopping, i know its early in but you just worrie so bad that this

> is all your going to get.Has anybody started out this way and end

up

> seizure free after awhile. iknow iam asking alot of questions,

but

> iam just so new to this diet you just worrie about everything.

> Caden,s mom Viola, Thanks.

[Guest guest]

Hi Viola,

A decrease in seizures means Caden is 'responder' of some sort, so that is

the good news...some kids see no improvement whatsever, sometimes even a seizure

increase, so def a reason to be optimistic.

The bad news (well not really bad, more frustrating than anything...) is that

yes, medications can mean the difference between seizure control and not - and

basically the only way to find out if weaning the meds is the answer, is to go

ahead and do it and wait for the response.

This can take a long time, er, still not med free after 3 yrs on keto here

with , but - don't take his scenario as a benchmark, lots of other road

bumps interfered with his control in that time. His main problem included the

benzodiazepine medications he was plagued with for the first 2 yrs on the diet

(and pre diet as well).

In answer to your question - have others started out that way to go on to

become seizure free? Def yes, more so than those who are seizure free from the

word go.

Some on here have taken months, cripes - even yrs to get there, and a big

percentage of those cases have involved drug complications. It is very hard to

finetune the diet aspect when meds are on board, trust me on that.....and v

difficult to know what to do first when control is still elusive.

If ketones are in a good place (like not too low or too high) and weight is

stable (not too big a decrease or increase), then meds would prob be the first

place to start.

We didn't get the go ahead to wean with , we did it ourselves based on

advice and experiences on this list. He had daytime control early on (about 3

days after diet intiation), still sleep sizures in the early am, but we were

happy enough with that at the time, until about 2 weeks later when the seizures

came back in the day bigtime - turns out the ketosis/AED combo had tipped him

into toxicity and in the end a rapid reduction (lamictal in his case) in

hospital was the way we got control back again. A Jnr Dr at our hospital agreed

to take a punt on our theory and 'allow' us to reduce, and 5 days afterwards

(following a short hit of diastat to break the withdrawal cycle) 'came

back' to us.

Every case is different as to how they will react with meds on the diet, and

how they respond to weaning etc, but med weaning/rationalisation is deifnitely

high on my list as fine-tuning measure. If there are any signs at all that the

dep is interfering, like not attaining stable ketones, seizures more prevalent

as the med doses peak, anything like that, I personally would try reducing

sooner rather than later. Perhaps telling your Drs that there are children on

the diet you know of who didn't get control till after meds were weaned, or even

reduced, may help him support you more in attempting it?

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

From: vihairaffair2000

Hi my son Caden has been on the Keto diet for about a month now.We

have seen some decrease in the seizures, but still having some

everyday, i hoping its his meds that are interfering with the diet ,

he is on Depakote, ive heard that this is not a good drug with the

diet. Hope his doctor will try to take him off soon to see if there

is a improvment.If you dont see the seizures stop pretty quickly, is

this the best they are going to get , iknow we have to do some fine

tuning still.Was wondering the longer you work with diet the

seizures will get better or you have abetter chance of them

stopping, i know its early in but you just worrie so bad that this

is all your going to get.Has anybody started out this way and end up

seizure free after awhile. iknow iam asking alot of questions, but

iam just so new to this diet you just worrie about everything.

Caden,s mom Viola, Thanks.

[Guest guest]

Hi Viola

We have been drug-free for nearly a month now and on keto since feb. We saw

improvements seizure wise almost immediately after initiation, so we knew what

the

diet was capable of. But we have never lost the seizures altogether in the early

days.

Ben was on Depakote only at initiation (he's 9 and it was a fairly high dose

1100mg

once a day). The seizures actually worsened over the next few months (they got

longer). We started weaning the drugs in May and as we came down the final slope

(did it really slowly at the end, reducing by 8mg a day) the seizures decreased

in

length. Almost exactly when we stopped the drugs they had returned to tiny

myoclonics (1 second max). This is where we are still at. So I think the

Depakote was

the bad guy as far as Ben was concerned. We still have too many jerks (5 or 6 a

day)

but now I can see what is triggering them, like getting worried or angry - eg at

school

- having a bad cold (shocking one at the moment), stopping a period of fairly

intense

physical activity (he'll have one shortly after he stops) etc etc. Maybe now we

can

investigate other things (hyperventilation always triggers a seizure during

EEG.)

Caden sounds similar to Ben - try to get him off the Depakote and you should see

things get better. Maybe they'll get worse before they get better, but thanks to

this

group and others I have been able to ride that storm and resist using other meds

etc

etc.

Best of luck

Rose - Ben's Mum