Re: Weaning sodium valproate (epilim)

[Guest guest]

Hi Gail

Thankyou for your message about the ketosticks. Maybe I can help you now....

We have been on the MCT version of the diet since March this year. So far so

good,

and I've been champing at the bit to get rid of the Epilim. I'm quite sure it is

doing

absolutely nothing in the way of controlling seizures (although we have a little

way to

go to get rid of the Epilim yet so I might have to eat humble pie).

We started off at 1100mg a day pre-diet. Ben was unfocused and quite

uncommunicative on such a high dose, which had been pushed up because he was

deteriorating slightly. I think his fine motor control was affected and I would

say he

has even had a slight hand tremor too. His school work suffered, and last year

he was

said to be working below the level expected for his age in Maths, Science and

English.

He was a really bright spark pre-epilepsy so it has been quite difficult to cope

with,

although I know a lot of people have to cope with far worse, and far more poorly

children.

After 3 months on the diet our consultant at GOSH gave us permission to start

reducing the Epilim (this is the only drug we're on currently as everything else

has

either failed to improve matters or made him worse) at the rate of 200mg per

fortnight - breakneck speed compared to your 40mg per month. I am nervous about

this decrease but I have stuck to it and we're now at 500mg. This has been one

of the

more stressful periods for us! Every time we decrease we get a slight worsening

of

seizures - more seizures and also twice, a day after reducing the med, we've

had an

odd seizure in the night which we never used to get pre-wean (they may have been

tonic-clonic too, which wasn't part of the picture before the diet). The first

time we

reduced I was very scared about the extra seizures and the night-time episode. I

decided I would hang in there as he wasn't as bad as he had been a few months

before the diet. I held my breath for about 4 days and then suddenly the extra

seizures just disappeared. That evening I was as high as a kite! This pattern of

reducing meds, worsening seizures for 3/4 days (maybe more), worsening

behaviour,

then returning to square one has been repeated three times, but at the moment we

are still better than we were pre-diet. For the next reduction I think I'm going

to do

down 100mg not 200mg.

So if you're worried about I just wanted you to know that the

side-effects of

withdrawal have not been a long-term problem for us. It's funny how consultants

don't get excited about drug-withdrawal - ours didn't either, although the

present

consultant was more than happy to support us. We're temporarily under the care

of

the GOSH consultant and she is very positive. Our other consultant is lovely,

but she

didn't suggest the diet - we had to beg!

All the best and I hope things improve for you both

Rose Toms - Mum of Ben (9) - in ketosis since March 04 and doing fine

[Guest guest]

Rose,

Thanks very much for that, our next appt is on Aug 9th, but we're

waiting for a new consultant to be appointed, so I guess we're going

to be treading water till then!

cheers

Gail

[Guest guest]

Hi Gail

Is it good news about a new consultant - does that mean the one who humoured you

has left?!

Keeping my fingers crossed for you and

Rose

[Guest guest]

Dear Gail,

Hi there, I sympathise with you - as we are busy weaning our son Keenan off

meds. He is also on Lamitrogine and Epilim. When we started weaning Epilim

(0.5mls every 5 days was the recommendation)

we had really horrible seizures. We then started weaning (my father's advice)

0.2 ml every four days, giving him a chance to withdraw on a more gradual curve.

This has worked wonders for him and we are almost halfway down on Epilim. When

you wean Epilim, Lamitragine will also lower in the system, so in effect, you

are lowering two levels. Keenan ( 2,1/2 yrs ) is very sensitive to change and I

am comfortable with this, in fact we are starting to see a withdrawal pattern as

well as seizures getting much much milder.

Keenan also needed carnitine, as Epilim leaches it. Maybe check Mathew's

carnitine levels and bicarb level as well. I noticed that as we came down on

meds his bicarb rose to a more acceptable level. Your son sounds like he is on a

high dose of Epilim - He could be slightly toxic !

(as we get even further down I am going to start 0.1 ml every four days - as the

withdrawal can be more severe !)

I hope that this helps !

Good luck,

Michele

Weaning sodium valproate (epilim)

Hi there,

We've been on the diet since Nov 03 with pretty good results - no

seizures whilst awake this year, and very gentle brief night time

tonic clonics. His EEG also shows a vast improvement in his non

convulsive activity.

I've been pushing the neuro to reduce meds for the last few visits.

He eventually agreed to reduce the Epilim (sodium valproate) by 1ml

(40mg) per month. As 's on 22 ml (880 mg) it would take

nearly 2 years to get him drug free at that rate! He's also on 40mg

lamotragine which the doc isn't touching. I felt like he was just

humouring me with this reduction routine.

Trouble is, even with this tiny reduction we've seen an increase in

's early morning sleeping seizures - we had one at 5.30 a.m.

and I've spent the last hour in tears with an overwhelming case of

the " what ifs " !

What are other people's experiences of weaning Epilim? I DO still

want to get rid of these nasty drugs, which never seemed to make

much difference anyway (although epilim DID stop the drop attacks,

which were particularly nasty), but I'm afraid of another downward

spiral after a pretty stable year.

Cheers

Gail

mum to (5) Lennox Gastaut

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

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