Topomax etc -Gretchen

[Guest guest]

-

Just read your post to Gretchen and noted that had nocturnal

seizures...which were well controlled by Topamax?? Very interesting as that is

Skyler's resistant seizure pattern as well. We've had two attempted go-rounds

w/Topamax but both w/pretty severe cognitive and language side effects, even at

low

doses. How has fared on these two arenas w/the Topamax?

Tracey

[Guest guest]

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 -----

> HI ,

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

> topomax? How old are your other two kids?

> Gretchen

[Guest guest]

Hi ,

I'll have to check out your family photo.

After what went through with the seizure cycle, I completely

understand why you are sticking with the topomax. I'm so glad it

hasn't affected him too adversly. You were lucky there. What is

MAE? Is there a good chance will outgrow his seizures

completely?

We met with our doctor this week, and he thinks Ethan was one of

those rare cases where the AEDs actually made the seizures worse.

He thinks the diet is completly working for Ethan, and he even

lowered the ratio to 3.5:1. For so many years, doctor visits always

left me feeling worse, but since starting the diet and since meeting

our new doctor, each visit gives me new hope.

In April, one month after starting the diet, Ethan's old seizures

stopped, and this new type started. They can last up to 30 minutes,

but seem very benign otherwise. He just looses consciousness as

though he were asleep. Since they don't show up on the EEG and

don't fit other symptoms of seizures (Ethan very conveniently had

one the doctor's office the other day), the doctor thinks they are

not really seizures. We are going to start biofeedback and look for

other ways to stop them. I am so thankful for this diet, that has

allowed us to get Ethan off AEDs. And I am so thankful for this

group that helped keep me going through the times when I feared the

diet wasn't working and wanted to quit. I am even daring to think

that Ethan might have a completly 'normal' future. What a concept!

Gretchen

> 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