My 5 year old daughter is about to begin Topamax. I am really scared about the side effects. Does anyone have any info to share about their children or themselves on Topamax? The other drug her Neuro reccomended was Lamictal but the rash has us too scared since she is so sensitive to everything and gets a rash all the time even from detergents.
Hi I've been on both topamax and lamictal. I started taking Topamax about 4 months ago, and one thing that I don't like about this medication is it causes short term memory loss. I feel like how a 60 year old must feel when I have a hard time completing my thoughts of what I want to say. I have a hard time coming up with certain words while talking to people and it's really embarrassing. It has been the best medication at controlling my seizures though. I will also stress to you since your daughter is so young, watch for any personality changes because this medicine for me, not everyone, but I am more sensitive to medications than most people, but for me it made me feel very odd and not like myself for a little while. I am just being honest with you of what it did to me. I would let her go ahead and try it because it's one of the best meds on the market but the side effects of it I've noticed are scary for some people. She may take well to it. My neurologist explained to different meds work different for different people.
As far as the Lamictal, I was on it for 5 days and started itching all over so I discontinued use of it.
I hope you can find what works best for your daughter. They have much better drugs on the market now than when I was her age having seizures.
They have capsuls (sprinkles) for younger children if needed. I wish I could help for that age group.
Food may taste different than before is a commonly reported side effect.
Make sure do drink the daily recomended amount of water.
I noted I don't perspire as much after getting on Topa.
Initial rampup effects may be foggyness of the mind on rare occations. The example my doc used "you may put the soap in the fridge rather than the milk".
I had "blank mind" episodes on 3 occations. I was composing an email and went blank in the process as if it was a minor seizure. Never had one like that before. In 30 seconds I was back to 100%. Same thing happened on the phone. I lost my train of thought words were erased I was barely able to squeak out "I'll call back". It had no feeling of a seizure like I usually sense. No pre or post symptoms. Only had one of those outside of adjustments since starting on Topa; NONE before.
I am an adult who has been taking Topomax since May. It has done wonders for me. I was on Dilantin and then Trileptal before the Topo. I experienced the loss of memory on both of those drugs as well. I believe that it is a side effect of most of these type meds and maybe even from the seizures themselves.
Yes, food will taste very different. Soda and anything carbonated taste very bad for me now. I also am not interested in sweets. Your child may have a decrease in appetite for a couple of weeks and you will have to coax her to eat. She may develope weird tastes too. Like right now, I live on 5 Triskets with Salami and swiss cheese. Not much else interests me. The smell of cooking meat, makes me ill. So be patient. Of course, she may not experience any of this either. But just be prepared for a few weird food habits.
Drinking the water is important, otherwise she may feel tingling in the bottom of her feet from dehydration.
I haven't experienced any negative personality changes. Topomax has taken me back to the closest I have gotten to being myself again since this whole sezure thing has hit. It also has done a very good job of controling my seizures.
Good luck with your daughter, I hope this works well for her!
Hi, My now 4 year old granddaughter is on topamax and also recently Keppra. She has become very aggressive and moody on the topamax. She has almost no appetite, once in a while we can get her to eat raw veggies with ranch dip, she only wants chocolate milk and ice cream. We give her a lot of pediasure. She wakes alot at night Sorry for the bad news. What type of epilepsy does your little one have? My granddaughter has partial seizures, sometimes she gets the blank look, sometimes she falls down. She has her yearly MRI this coming week. Boy, we hate that It scares her badly. All any of us with little ones with epilepsy can do is pray and hope and badger the medical people for all the info and support they will give us. Blessings to you and yourl little one. Kasey
Thanks everyone for all the info and advice. She began Topamax last night and woke up this morning with a stomach ache. She also said last night she felt weird like she wasn't at home and that she was somewhere else. Also tossed and turned all night. But her appetite is fine. She's usually a good eater so I will notice right away if that changes.
Kaseyjcf, she has partial and generalized seizures. She also gets the blank stare although that has recently (before any meds) almost completely gone away. She used to be so bad that her preschool teachers thought she had a hearing problem.
One suggestion on the MRI if you can find a place that lets her watch a video during the MRI that really helped my daughter during hers. She wore those virtual reality glasses and got to pick out a video to watch during the entire MRI. Ask the Neuro's office about it. Anyway, thanks for the info.