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Re: Topomax Bummer

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When we weened my then 1yr old daughter off topamax the nuerologist

added lamictal. She had seizures for about 2 weeks then they stopped

all together. She went from having 4 a day to none for the past

year. I know all children are different but thought I would share

the information.

Randi

daughter 19months bilateral PMG

>

> Hi,

>

> We are on schedule to reduce Topomax.  However, our daughter's

seizures increased from about 7-8 per day (myclonic - quick jolts

that do take her off of her feet - she wears a helmet all day now) to

about 13 per day since our first decrease.  We're trying to be

patient and wait it out until Thursday which would be one full week

of the lower dose.  However, it's darn hard to see your 2 1/2 year

old getting knocked down all of the time.  Anybody else experience

this either during an increase or decrease of meds?  If so, how long

until you seen some stability?

>

> She is also waking up once a night but we think it's because she's

peeing through her diaper and getting wet.  We have her in a size 6

Huggies Overnight but she's still leaking through.  Any

recommendations?

>

> Thank you!!

>

>

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>

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Hi,

We are in the same position as you..My son is on 125ml twice a day

and is being weened off topomax at the moment, he has up to 4 grand

mal seizures everyday along with 10-20 peti mals, even before he

started to be weened off topomax he stated having a new type of

seizure where his eyes roll back into his head - he can normally

bring himself round without falling or going into a full blown

seizure but now he is having more and more trouble " conrolling " them,

he now has 30-40 a day and is losing control of his body i.e his

knees buccal and if he has anything in his hands he drops it, we

spent hours up A & E last week because he had one of these " episodes "

and fell down the stairs, we have only gone down by 1 tablet =25ml so

i dread to think what hes going to be like when we drop the dose

again this week.

Our Dr has suggested Zonisamide, Phenytoin or Vigabatrin - the

later i don't want to use unless the others don't work...

Has anone else has experience with these meds?

Thanks in advance

mum to 8yrs PMG/LISS severe Epilepsy G-Tube Reflux

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