Question:

My 3 year old son is taking the sprinkles.  He now tells me that he is seeing "balls".  The Dr tells me that it is one of the very rare side effects.  He feels that it is more like an aura that he is getting.  I’m very new to all this.  Seems like nothing makes much sense these days.  I have recently noticed a small bald spot on his head.  Has anyone ever heard of that happening?? Any replies would be helpful!!! Thanks, Carol

Response:

I was on topomax a few years ago for a short time. I had a bad affect in the form of what I could call "IQ reduction". I was so dumb that in spite that I had had no seizures while being on it topomax was stopped. I don’t know how many people were affected that way. – Hide quoted text — Show quoted text -Tom and Carol wrote:

My 3 year old son is taking the sprinkles.  He now tells me that he is seeing "balls".  The Dr tells me that it is one of the very rare side effects.  He feels that it is more like an aura that he is getting.  I’m very new to all this.  Seems like nothing makes much sense these days.  I have recently noticed a small bald spot on his head.  Has anyone ever heard of that happening?? Any replies would be helpful!!! Thanks, Carol

Response:

I’ve been taking it since february and it seems to have cut down the frequency  of the seizures (I have TLE and had the surgery three years ago).However-it is  VERY expensive -even with my insurance (blue cross) I am paying  $115/100-tablets(!)-$278 over the counter with no insurance!

Response:

I am going to be put on Topomax with Depakote (Epilim). Can anyone tell me about their experiences with Topomax? I have TLE.

I took Topomax for about 2 months.  I got really depressed and anorexic.  It  wasn’t good for me. Best of luck Jo

Response:

i understand over 25% cant take this drug.  anyone have to stop? if so reasons would be appreciated.

Response:

Hi, My daughter, 12 years, had to stop because it increased her number of seizures and auras, although it seemed to "up" her mood, also made her sleep less. Michelle

Response:

My daughter was on Topamax for 6 weeks.  She becameextremely unfocused and disoriented, lost 15 pounds and had drop seizures (it was taken with dilantin and weaning off lamictal to go on top. so that could be the reason for the drops).  It DOES help some people, but that was our experience.

Response:

I’m going through just about the same thing, lost a lot of weight, except I lost 20 lbs! (No drop seizures but word finding is a pain.) I finally convinced my neuro to take me off Dilantin and put me back on Depekote.  I told him about the "munchies" I got when I was on it and I just started the transition.  I know I’m looking at trembling hands again but better that than a pile of bone IMHO. Adrian – Hide quoted text — Show quoted text -Sheila1018 wrote in message <19981225201804.22132.00001…@ng119.aol.com

… My daughter was on Topamax for 6 weeks.  She becameextremely unfocused and disoriented, lost 15 pounds and had drop seizures (it was taken with

dilantin

and weaning off lamictal to go on top. so that could be the reason for the drops).  It DOES help some people, but that was our experience.

Response:

Shelia, My daughter’s (14) experience mirrors your childs. Dilantin with Lamictal, dropping Lamictal, adding Topamax. Trail and error is the only way to deal with epilepcy and my daughter is so tired of the errors as well of the trails I might add. She was on the max of Lamictal and began having drop seizures, and when we added Topamax, Dilantin level got low, had to raise it, and continue 100mgs of Lamictal and Topamax to keep her seizure free,(a day or to here a day or two there) Now, as of yesterday, levels rose (Merry Christmas) and eyes began to shake, hands began to tremble, I am sure you all know the signs. One day we will get this striaght. Going to check out VNS. She was not a candidate for seizure center removal surgery, so…. Good luck with your daughter. How old is she? Bye the way, my daughter went for 126 to 112 in a very short time. If she loses much more than iI guess we will have to try someother drug,(if there is one out there that we haven’t) God Bless, Kelly S . – Hide quoted text — Show quoted text -

Sheila1018 wrote in message <19981225201804.22132.00001…@ng119.aol.com… My daughter was on Topamax for 6 weeks.  She becameextremely unfocused and disoriented, lost 15 pounds and had drop seizures (it was taken with dilantin and weaning off lamictal to go on top. so that could be the reason for the drops).  It DOES help some people, but that was our experience.

Response:

Our 13 year old daughter was on topomax, dilantin, and tegretol…total 480 mg per day.  Her appetite was very sporatic, nothing tasted good.  She had surgery in August and now is on 800 mg of carbitrol and (funny to us) she thinks the meds are making appetite increase.  BTW, she has not had a seizure since the surgery (happy to report) and also, does not search for words in her normal speech.  So, my conclusion is that the meds do effect the appetite and short term memory retrieval… – Hide quoted text — Show quoted text -Kelly Somerfield wrote in message <36854261.133B8…@ipa.net

… Shelia, My daughter’s (14) experience mirrors your childs. Dilantin with Lamictal, dropping Lamictal, adding Topamax. Trail and error is the only way to deal

with

epilepcy and my daughter is so tired of the errors as well of the trails I

might

add. She was on the max of Lamictal and began having drop seizures, and

when we

added Topamax, Dilantin level got low, had to raise it, and continue 100mgs

of

Lamictal and Topamax to keep her seizure free,(a day or to here a day or

two

there) Now, as of yesterday, levels rose (Merry Christmas) and eyes began

to

shake, hands began to tremble, I am sure you all know the signs. One day we

will

get this striaght. Going to check out VNS. She was not a candidate for

seizure

center removal surgery, so…. Good luck with your daughter. How old is she? Bye the way, my daughter went

for

126 to 112 in a very short time. If she loses much more than iI guess we

will

have to try someother drug,(if there is one out there that we haven’t) God Bless, Kelly S . Sheila1018 wrote in message

<19981225201804.22132.00001…@ng119.aol.com

…

– Hide quoted text — Show quoted text -

My daughter was on Topamax for 6 weeks.  She becameextremely unfocused

and

disoriented, lost 15 pounds and had drop seizures (it was taken with dilantin and weaning off lamictal to go on top. so that could be the reason for

the

drops).  It DOES help some people, but that was our experience.

Response:

I meant to say 4800 mg/ day…now down to 800mg / day Ed & Nancy Petka wrote in message … – Hide quoted text — Show quoted text -

Our 13 year old daughter was on topomax, dilantin, and tegretol…total 480 mg per day.  Her appetite was very sporatic, nothing tasted good.  She had surgery in August and now is on 800 mg of carbitrol and (funny to us) she thinks the meds are making appetite increase.  BTW, she has not had a seizure since the surgery (happy to report) and also, does not search for words in her normal speech.  So, my conclusion is that the meds do effect the appetite and short term memory retrieval… Kelly Somerfield wrote in message <36854261.133B8…@ipa.net… Shelia, My daughter’s (14) experience mirrors your childs. Dilantin with Lamictal, dropping Lamictal, adding Topamax. Trail and error is the only way to deal with epilepcy and my daughter is so tired of the errors as well of the trails I might add. She was on the max of Lamictal and began having drop seizures, and when we added Topamax, Dilantin level got low, had to raise it, and continue

100mgs

of Lamictal and Topamax to keep her seizure free,(a day or to here a day or two there) Now, as of yesterday, levels rose (Merry Christmas) and eyes began to shake, hands began to tremble, I am sure you all know the signs. One day

we

will get this striaght. Going to check out VNS. She was not a candidate for seizure center removal surgery, so…. Good luck with your daughter. How old is she? Bye the way, my daughter

went

for 126 to 112 in a very short time. If she loses much more than iI guess we will have to try someother drug,(if there is one out there that we haven’t) God Bless, Kelly S . Sheila1018 wrote in message <19981225201804.22132.00001…@ng119.aol.com… My daughter was on Topamax for 6 weeks.  She becameextremely unfocused and disoriented, lost 15 pounds and had drop seizures (it was taken with dilantin and weaning off lamictal to go on top. so that could be the reason for the drops).  It DOES help some people, but that was our experience.

Response:

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