Re: Topomax etc -

[Guest guest]

Hi ,

I hope you don't mind me butting in here. But I was very interested

in what you had said about Phenytoin aggravating 's syndrome

(which I assume is Doose/MAE from what you said in your post???).

My son does not have a diagnosis of this but he has a few of the

characteristics and in my heart of hearts I trully believe the

phenytoin he is still on with the diet is what is causing him to

continue to have seizures. Before the diet he had only had TC's but

one year into the diet (still on phenytoin) he started to have

myoclonics. Did your neuro tell you this about the phenytoin or had

you read it somewhere?

You are really a wealth of information .

Thanks,

> Hi Gretchen,

> is 10, and is 4, so at 7 is our middle child.

I

> changed their pics in the photo section this morning actually, the

other

> ones in there were getting a bit old. It's quite nice of the 3 of

them,

> though was looking at the camera at that angle to get red

eye, but

> never mind

> and Jake are like genetic peas in the pod, so desperately

hoping

> that epilepsy wise, it doesn't extend too far....

> Yep, is still on topomax....but this wasn't actually gonna

be the

> plan originally when it was started back in Dec.

> As we felt so strongly that 's problems were from an

intolerance to

> benzodiazepines in conjunction with high ketones brought about by

the

> introduction of carnitine, we were sure we were going to improve

him by

> taking away the oral diazepam completely (regular AED previously),

but the

> abrubt withdrawl after 3 yrs use left him in deep you know what at

the other

> end of the scale. When he had these reactions to weaning meds

prior, we were

> always able to jump in with an emergency med (usually a benzo

cousin) to

> stop the withdrawal cycle. This time though we had nothing, as his

file had

> been noted with benzo hypersensitivity and had probably caused the

problems

> in the first place....phenytoin and phenobarb are not recommended

with his

> syndrome, (can aggravtate their seizures) and parladehyde had done

nothing.

> That's where the topomax rapid introduction came in, it had worked

in a few

> cases round the world to break status when introduced very rapidly

(not

> usually recommended, can lead to quite severe side effects but we

were

> desperate) and this is what the consulting ped epi had recommended

trying to

> 'stop the cycle'. It worked very quickly if indeed it was that (as

you know

> we are still not 100% sure), and we were able to stop the rapid

incrementing

> up after 5 days, so at that point he was only on 5 mgs per kg (plan

had been

> to go up as high as 12 mgs per kg), the very lowest end

of 'theraputic'.

> Because all the seizures stopped completely soon afterwards,

(including

> night ones which had always been his main problem post-diet) no

one,

> including us, was keen on taking the topomax away, 'just in case'

it had

> done more than stop the cycle and was finally a med that actually

worked for

> him.

> So that's where we are stuck, on the same dose with it causing

some

> problems ph/acidity wise in conjunction with the diet and not sure

what to

> change, if anything at all...

> But - I'm not complaining too loudly, it is a lowish dose and

doesn't seem

> to have affected him badly in any other area, and of course with no

seizures

> happening, I am just grateful that something (whatever it may

be...) is

> working for him. It may be that the diet without benzos on board

finally is

> now working 100% for him (he had in the main daytime control for

his first 2

> yrs on the diet, just the intermittent night ones left), or there

is a

> slight chance that he has actually 'outgrown' his syndrome

fullstop, this

> can happen with MAE, but I haven't let myself dream quite that far

yet

> Ask me again in 12 mths time....

>

>

>

> ----- Original Message -----

> From: " gretchen_kissock "

>

> > HI ,

> > I'm glad to hear is doing well. Is he still taking

> > topomax? How old are your other two kids?

> > Gretchen