RE: a new anti epileptic drug

[Guest guest]

Carolyn-

Sometimes you just need to stop the seizures any way that is possible. I would

avoid the diet until you have proper support. Its just allot of stress to learn

the diet and do in on your own with no help!! Can you go to a different center,

one that is more helpful...can you move? ( I know that's a big one, but I know

you love your son, and if the help isn't close maybe, just maybe you need to

think about relocating) lots of parents have done so, when the support has not

been there...Let us know how we can help.

, mom to Ethan

Carolyn-

Below is what I found about the drug:

Treatment with Sulthiame (Ospolot) in benign partial epilepsy of childhood and

related syndromes: an open clinical and EEG study.

Engler F, Maeder-Ingvar M, Roulet E, Deonna T.

Neuropediatric Unit, University Hospital, Lausanne, Switzerland.

The effect of Sulthiame on the EEG and on clinical seizures was evaluated in an

open uncontrolled study in 25 children with focal sharp waves on the EEG (FSW).

16 children had typical benign partial epilepsy with rolandic spikes (BPERS), 5

children with atypical forms and 4 children with no clinical seizures but

cognitive disturbances possibly related to the FSW. The effect of Sulthiame in

suppressing the EEG discharges was evaluated on the waking and sleep EEG before

introduction of the drug, and at 3 - 6 months, 6 to 12 months and beyond while

under therapy. The children were followed clinically for one to several years.

The EEG discharges disappeared or decreased under Sulthiame in 13/21 cases at 3

to 6 months but reappeared in 3/13 cases beyond this period. No case had a

worsening of the EEG or of clinical seizures under Sulthiame, and no cognitive

stagnation was noted. Our data confirm the good tolerance and positive effects

on the EEG and justify systematic trials of this drug in the partial

" functional " epilepsies, especially when negative cognitive consequences of the

epileptic discharges are suspected.

PMID: 12776234 [PubMed - indexed for MEDLINE]

a new anti epileptic drug

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on your

child?

aël has so many t c seizures, I put 2 intra rectal valium tonight but

still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

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[Guest guest]

Dear Carolyn,

I was on Ospilot (I believe that's the one you mean) during the late 1960's,

I'd be around 7 or 8 yrs old at the time.

It would be unfair to judge the drug in isolation, as back in those days I was

also take Tegretol, Epinutin and Phenobarbitone. In those days, within the

UK, I doubt that the Ketogenic diet was available, so the only treatments

available during that time for me was drugs.

As says, it's more important to stabilize ael's epilepsy by drugs,

if by no other means, reading from other parents' e-mail, once they've

introduced the diet and positive effects are taking shape, then the drugs could

then be reduced or perhaps eliminated.

From my past experience with doctors and consultants, they cover a broad

spectrum of knowledge, or lack of, as the case may be. Many years ago I'd

found less qualified medical staff better able to treat me for my epilepsy than

the consultant I saw prior, so a second opinion never does any harm. The only

concern I would have is whether you could find another consultant who's

actually running the ketogenic diet.

I wish you and ael all the best,

Phil

a new anti epileptic drug

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium tonight but

still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

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[Guest guest]

Actually ospolot was the next drug we were looking at for

because it makes you very acidic. Thats what Jess needs for seizure

control and the diet made her acidic but now her body has learned to

fight the diet's acidity. Ospolot is suppose to be very strong, much

stronger than diamox, which also makes you acidic.

So..........if nathaniel needs acidity for seizure control (which you

wouldn't know yet, and most kids don't), it would be a good choice. But

if you started it with the diet you should be very very careful. Only

way neuro would agree to start it with diet for was to do in

hospital for close monitoring.

Philip Lowe wrote:

> Dear Carolyn,

>

> I was on Ospilot (I believe that's the one you mean) during the late

> 1960's, I'd be around 7 or 8 yrs old at the time.

>

> It would be unfair to judge the drug in isolation, as back in those

> days I was also take Tegretol, Epinutin and Phenobarbitone. In

> those days, within the UK, I doubt that the Ketogenic diet was

> available, so the only treatments available during that time for me

> was drugs.

>

> As says, it's more important to stabilize ael's epilepsy

> by drugs, if by no other means, reading from other parents'

> e-mail, once they've introduced the diet and positive effects are

> taking shape, then the drugs could then be reduced or perhaps

> eliminated.

>

> >From my past experience with doctors and consultants, they cover a

> broad spectrum of knowledge, or lack of, as the case may be. Many

> years ago I'd found less qualified medical staff better able to treat

> me for my epilepsy than the consultant I saw prior, so a second

> opinion never does any harm. The only concern I would have is

> whether you could find another consultant who's actually running the

> ketogenic diet.

>

> I wish you and ael all the best,

>

> Phil

>

>

> a new anti epileptic drug

>

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did you try

> it on your child?

> aël has so many t c seizures, I put 2 intra rectal valium

> tonight but still 20 seizures!maybe a less intensive but I really

> don't know!

> Nath's dad has him one day and he didn't respect the diet!I'm so

> angry!

> I try again but I'm exhausted of seizures and every thing else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

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