Topamax

The biggest problem my daughter had with Topamax was with her language skills. She had trouble with reading comprehension because she couldn't remember the meaning of words she already knew. She would also get frustrated when she was talking because she couldn't remember a word she needed. She knew what she wanted to say but had trouble remembering the words she need to say it - sometimes even words as simple as "THE."

The hard part was she is a college student and this was affecting her schoolwork...to the point that they had to switch her to something else. It might have been worth it if she had any relief from it, but it wasn't something that was working for her so they changed it.

Sheri

I don't like to put down specific meds because each kid is different but since you asked, Topamax was the worst for my son. He just turned two so I can't say it affected his speech but much of his hair fell out. I asked the Neuro, 'I don't care about his hair but could this indicate that it is doing other things to his body?' He said that he didn't know so I said lets take him off of it right away. He also lost his appetite and lost lots of weight (5 lbs) and he only weighed 26 lbs. He also developed absence seizures (lots of eye fluttering). FYI - If you are planning to try the Ketogenic Diet, Topamax can make the body more acidic and so does the Diet so even though my son was weaned off Topamax a few days before Diet started he still went into metabolic acidosis which you want to avoid if possible. I hope you find something that works well, Kim

It sounds like your daughter responds well to medication so please don't base decisions on info about my son. He didn't have any seizure control with medications.

I don't like to put down specific meds because each kid is different but since you asked, Topamax was the worst for my son. He just turned two so I can't say it affected his speech but much of his hair fell out. I asked the Neuro, 'I don't care about his hair but could this indicate that it is doing other things to his body?' He said that he didn't know so I said lets take him off of it right away. He also lost his appetite and lost lots of weight (5 lbs) and he only weighed 26 lbs. He also developed absence seizures (lots of eye fluttering). FYI - If you are planning to try the Ketogenic Diet, Topamax can make the body more acidic and so does the Diet so even though my son was weaned off Topamax a few days before Diet started he still went into metabolic acidosis which you want to avoid if possible. I hope you find something that works well, Kim

It sounds like your daughter responds well to medication so please don't base decisions on info about my son. He didn't have any seizure control with medications.

I don't like to put down specific meds because each kid is different but since you asked, Topamax was the worst for my son. He just turned two so I can't say it affected his speech but much of his hair fell out. I asked the Neuro, 'I don't care about his hair but could this indicate that it is doing other things to his body?' He said that he didn't know so I said lets take him off of it right away. He also lost his appetite and lost lots of weight (5 lbs) and he only weighed 26 lbs. He also developed absence seizures (lots of eye fluttering). FYI - If you are planning to try the Ketogenic Diet, Topamax can make the body more acidic and so does the Diet so even though my son was weaned off Topamax a few days before Diet started he still went into metabolic acidosis which you want to avoid if possible. I hope you find something that works well, Kim

It sounds like your daughter responds well to medication so please don't base decisions on info about my son. He didn't have any seizure control with medications.

Hi Marian --
My comment isn't really about Topamax, although Sarah's on it. She hates it, because she says it makes her brain 'fuzzy.' She has difficulty with word recollection and reading comprehension. I have to say that it's a little hard to separate out the T side effects from her brain damage, so I don't know if she'd have the same language issues if she weren't on the Topa. Also, it suppresses her appetite, so I'm always trying to get her to eat.

One thing I did want to comment on, though, is just generally adding another medication. In my experience (and yours might be really different), the ER is a terrible place to make decisions about seizure medications. In our ER, Sarah isn't seen by her doctor, she's seen by whoever happens to be staffing it that day. They might not even have any particular interest or expertise at pediatric neurology, much less epilepsy.

Personally speaking, I would want to have EEG proof that Sarah was having breakthrough seizures before I was willing to add another medication.