Re: which way? Adam

[Guest guest]

Hi Adam,

As others have suggested, sometimes control on the diet is elusive until the

meds are weaned, and yes, epilim is one that can interfere with ketosis and

therefore seizure control.

We had to keep reducing 's epilim down below a certain level, and kind

of keep on top of it for a lot of his first 2 yrs on the diet - are there any

clues suggesting it may be the culprit - like are the seizures more noticeable

as her epilm dose peaks? This was always our clue with that it was time

for a reduction, usually 60-90 mins post dose we saw one like clockwork -

especially if he was up above a 600, 700 mg dose - and we also had to always

separate it from his keto meal - the 2 given together (like with the benzos)

just never seemed to work for us.

Also - if Amelie has a low energy threshold, the other possibility to consider

is that her carnitine levels (due to the epilim diet combo) may have dropped

below a level where she can metabolise the fat properly, and if she is severely

deficient, this can on it's own cause seizures, with or without a pre-exisitng

epilepsy.

We have had a hard time when we have tried to suplement with carnitine

in the past (his levels have dropped back down again from being on this

combination) so rather than try supplementing again, we have decided to try

weaning the epilim instead, hopefully improving, or even eliminating the

problem.

is not symptomatic at this stage (his energy levels are ok, and he is

not seizing, the 2 main things to be on the alert for with carn deficiency) but

our neuro feels that if his levels drop much further, he soon will be.

So perhaps something to check for, if you haven't done so already, and also it

might be helpful to look through some of the archived posts in the home pages,

might give you some more insight into how others fared with the epilim/diet

combo.

I am pretty sure CHOP is one of the hospitals that weans epilim whenever

possible before starting the diet, if you wanted to give your neuro some reasons

as to why you might want to look at this as an option, and Hopkins mebbe? Or

have I got that mixed up...anyways there are certainly some centres that are

quite sure that the 2 together are not recommended, either metabolically or

seizure control wise.

I am unsure why your neuro would say the epilim is a stabilising factor if

Amelie is still seizing - the fact that she is, means it obviously isn't doing

it's job? Or is he saying she would be even worse if she were weaned off it?

Have you ever tried her off it, like pre diet, or has it always been in there as

the baseline med? That has always been the case here, and I often wonder how

different things might have been if one of the other meds tried pre diet had

been give a go as monotherapy rather than always in conjunction with the epilim,

but it pays not to look too far back sometimes doesn't it....

which way?

Hi

I just wanted to ask the group their opinion as we are seriously

thinking of weaning our daughter, Amelie off the diet. It's not

been an easy decision, having read so many wonderful and

positive experiences on the site. Our daughter has been on the

diet for 6 months, she has achieved good ketone levels and we

have seen very little improvement( if any) in terms of seizure

control. For a short time we really believed that things were

improving but now on reflection we think we'd just been

deluding ourselves. She has very low energy threshhold and we

hate depriving her of the one thing she can do really well, eating

food, she used to love meal times but now hates them.

We are at a cross roads in her treatment as we know things will

have to change. She is also on epilim which some parents have

suggested can effect the potential of the diet. Our gut reaction is

to wean off the diet and see where we stand, this route will

undoubtedly lead to trials with other combinations of AED's. I'm

sure you can relate to our terror in going this route. Another

option might be to stay with the diet, hoping for future progress

and wean off the epilim with the hope that siezures don't

increase. ( Our neuro believes the epilim has been a stabalising

factor on her siezures) This route would almost certainly go

against his advice.

Do any parents out there have experience that might inform our

decision

Thanks for your help

best wishes

adam stone