RE: zonisamide (spelling) or zonnegram

[Guest guest]

Elise had to go through a few seizure meds before we found one that

worked. Keppra has been very effective for her. You may already

have the book, but there is a book Childhood Epilepsy by Freeman that

goes through the different types of seizures and what medications are

effective for them.

>

> Anyone one on either of these seizure meds and if so what has been

> your experience? We are on lamictal and keppra right now with no

> success. We may add zonisamide tomorrow. I do know that it can

cause

> acidiosis but we are left with very little to try. Any suggestions,

> comments would be greatly appreciated.

>

> Thanks

>

> Geri-Anne and Wyatt, complex I

> caringbridge.org/mn/wyattc

[Guest guest]

Hi, Geri-Anne

My older son, Seth (13), has been on Zonnegram for about two years

now. We never noticed any side effects with him. No tiredness or

emotional instability (which we often see when we change his meds).

The mito doc says Zonnegram also has a good effect in the cells

(don't remember exactly what that is though - maybe a stabilizing

effect or something - sorry). It has worked well for Seth.

Cindy (mom to Seth and Ben, both mito)

>

> Anyone one on either of these seizure meds and if so what has been

> your experience? We are on lamictal and keppra right now with no

> success. We may add zonisamide tomorrow. I do know that it can

cause

> acidiosis but we are left with very little to try. Any suggestions,

> comments would be greatly appreciated.

>

> Thanks

>

> Geri-Anne and Wyatt, complex I

> caringbridge.org/mn/wyattc

[Guest guest]

Hey Geri-Anne! and Lindsey were on Zonegran for about 2 years. We just recently took them off it last month. I honestly don't think it did anything for the girls. We had it combined with Keppra. I didn't notice any bad side-effects with it though. Is Wyatt having seizures more frequently? What types of seizures are you seeing?

Kim - Mom to and Lindsey

zonisamide (spelling) or zonnegram

Anyone one on either of these seizure meds and if so what has beenyour experience? We are on lamictal and keppra right now with nosuccess. We may add zonisamide tomorrow. I do know that it can causeacidiosis but we are left with very little to try. Any suggestions,comments would be greatly appreciated.ThanksGeri-Anne and Wyatt, complex Icaringbridge.org/mn/wyattcPlease contact mito-owner with any problems or questions.

[Guest guest]

Hello geri-anne, i just wanted to point out that each

child responds differently to each medication.......My

daughter " Hala " has been on zonisamide since the

summer of 2003, it really helped us control her

seizures very well........although she still has some

mild jerks, but to tell you the truth zonisamide is

the best med for her. I am really happy and thankful

that i gave it a try.

GOOD LUCK

P.S zonisamide reduces the sweating process, be sure

to keep him well hydrated and make sure he doesn't

stay in heated places.

Muneera mom to Hala (27 months)

--- Kim Novy wrote:

> Hey Geri-Anne! and Lindsey were on Zonegran

> for about 2 years. We just recently took them off

> it last month. I honestly don't think it did

> anything for the girls. We had it combined with

> Keppra. I didn't notice any bad side-effects with

> it though. Is Wyatt having seizures more

> frequently? What types of seizures are you seeing?

>

> Kim - Mom to and Lindsey

> zonisamide (spelling) or zonnegram

>

>

>

> Anyone one on either of these seizure meds and if

> so what has been

> your experience? We are on lamictal and keppra

> right now with no

> success. We may add zonisamide tomorrow. I do

> know that it can cause

> acidiosis but we are left with very little to try.

> Any suggestions,

> comments would be greatly appreciated.

>

> Thanks

>

> Geri-Anne and Wyatt, complex I

> caringbridge.org/mn/wyattc

>

>

>

>

>

> Please contact mito-owner with any

> problems or questions.

>

>

>

[Guest guest]

hi,

We are using zonegran for Leighann, it is an addition to trileptol,

shes been on it for almost 4 months, low, very low side effects on her.

It has definately helped with seizure activity, still not seizure free,

they've been less often and less intense. The only side effect I notice

with her is when we increase the dose she gets a little sleepier, but its

at bed time, not bad, not like drugged up, and then her body seems to

get used to the increase rather quickly. Just our experience. By the way

Leighann is 2, and they started on minimal dose, she started 12 1/2 mg per

day, now on 50 mg a day. It hasn't been a " wonder drug " but it has helped,

thats our experience. Also like I said it hasn't drugged her up like others

do.

Hope this helps.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/16/2005 1:19:10 PM

> Subject: zonisamide (spelling) or zonnegram

>

>

>

> Anyone one on either of these seizure meds and if so what has been

> your experience? We are on lamictal and keppra right now with no

> success. We may add zonisamide tomorrow. I do know that it can cause

> acidiosis but we are left with very little to try. Any suggestions,

> comments would be greatly appreciated.

>

> Thanks

>

> Geri-Anne and Wyatt, complex I

> caringbridge.org/mn/wyattc

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hi Geri-Anne,

My 4 year old, Liam, who may have mito, began having myoclonic

seizures when he was about 5 months old. Finally the doc at

Vanderbilt put him on zonegran when he was about 9 months old. It

worked wonders. He's been on the same dose (200 mg per day) since

Jan. 2001. As far as we can tell, he is seizure free, and that's the

only drug he's on. Sleep deprived EEG showed he still has abnormal

rhythms, though, so we haven't attempted taking him off the drug.

Side effects are supposed to be minimal. The sweating, less ability

to cool oneself off, is noted as the biggest. I am pretty convinced

that the medication has affected Liam's language (or lack thereof),

but all docs we've discussed this with have denied it. I did see a

Medline article about it affecting the language center of the brain,

though. I believe some confusion and difficulty concentrating are

also possible side effects.

Overall, I'm very pleased with zonegran. I have heard it is mostly

used in conjunction with other meds, but for Liam, so far, it's the

only one he's on.

Good luck,

Mama to Seamas, 10

and Liam, 4 - myoclonic seizures, global dev. delay, undescended

testes, short stature, hypotonia - possible mito?? - no dx.

>

> Anyone one on either of these seizure meds and if so what has been

> your experience? We are on lamictal and keppra right now with no

> success. We may add zonisamide tomorrow. I do know that it can

cause

> acidiosis but we are left with very little to try. Any suggestions,

> comments would be greatly appreciated.

>

> Thanks

>

> Geri-Anne and Wyatt, complex I

> caringbridge.org/mn/wyattc