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meds for absence and tonic clonic seizures

Wed, 05/11/2005 - 22:58
Hi, my son is 7 years old and one and a half years ago he was diagnosed with absence seizures and then 6 months ago he started with tonic clonic seizures, he has just come out of hospital after spending 12 days there, he was having seizures every hour (tonic clonic) for the first 8 days and then he was just having the absences every 20 minutes. he was taking epillim and lamictal and he got worse, then they put him on epillim, and ethosuximide and clobazam, now they want to replace the ethosuximide with topamax, i have told them i can't give this medication to my son, the side affects are really horrendous, and i can't give my child a drug which will cause greater harm. Does anyone have any ideas about which drug combinations seem to work for absences and tonic clonic, because some drugs for tonic clonic can make absences worse and visa versa. I know all drugs have some kind of side affects but some are just not worth it, I feel i owe it to my child to make some kind of informed choice for him without causing him to become so forgetful that he can't add 1 +1 . Any advice would be much appreciated, i am so devestated by this and i am so scared for him. thanks, from a desperate mother.

Comments

RE: meds for absence and tonic clonic seizures

Submitted by mommy on Thu, 2005-05-12 - 12:11
I know how you feel. My 7 year old son had a seizure two years ago grand mal. He had all the test everything was normal. So the doctor said we will do nothing. Two months ago he had a grand mal in the car on the way to Florida. Stopped in the er in Georgia everything was normal again. 12 days later he had another grand mal  all test are normal but they did put him on lamictal. So far no more seizures that I know of. My son has a heart defect called double outlet right ventricle which he had surgery for at 4 months. His heart is ok for now but he can't have alot of the medications becauseof his heart condition. Now those two things are ok for know but he has asthma. and allergies to pollen and weeds and feathers. We live in Michigan and pollen is bad now so he is on 4 meds for the asthma and allergies along with a pill for his heart and now seizure meds! everyday I go give him breathing treatments at school after his lunch.hang in there pray and keep trying differnt drugs but always trust your instincts. The doctors have an educated guess.

RE: meds for absence and tonic clonic seizures

Submitted by susan2 on Thu, 2005-05-12 - 13:56
Hi to you all, and thank you so much for your replies, i have learnt a lot from reading all your posts on this site, it must be so hard for you all, i have great admiration for you all. My son had another grand mal siezure at 7:30 this morning and he has had numerous absence siezures today, its been a hard day for him and us. I try to keep calm and collected but inside my heart is breaking and i keep all my tears in because if i start to cry i may never stop. It is a bit of a comfort zone reading the posts on this site, The neurologist started all his meds on a low dose but they don't seem to agree with him much. now he is on 13mls epilim twice a day, and 9mls ethosuximide twice a day, and 10mls clobazam twice a day, and he is still fitting, all we can do is pray that one day he will get over this, but the neurologists say it is very unlikely he will ever outgrow his epilepsy. Anyway once again thank you all and i wish you all my very best wishes.

RE: RE: meds for absence and tonic clonic seizures

Submitted by kaaye on Thu, 2005-05-12 - 15:33

I really do not know all that much about medicines used for epilepsy in any great detail but I was told that the Epival or Depakene (Valporate/divalpoex sodium) is a drug used in children with absence seizures who are akso prone to tonic clonic seizures....my daughter currently takes 375mg twice a day bc the ethosuximide (Zarontin) did not keep them in control, she has never had a TC seizure....I have been told that my son who currently is on Tegretol will be changed to Epival if the Tegretol does not show improvement in his seizures....

Just a thought...I hope it may help a bit

Good luck and all the best, I really hope you are able to find your son some relief soon...one of our biggest issues with the Tegretol my son takes are the side effects...i understand your worry and concern in regards to that.

Karen-mom to Kiana 10(absence E on Epival) Nicholas & Alexander 9 and Ethan 4(primary generalized tonic clonic seizures on Tegretol,intestinal dysmotility,delayed gastric emptying,GERD,nutritional malabsorption,100% G tube dependent)

I really do not know all that much about medicines used for epilepsy in any great detail but I was told that the Epival or Depakene (Valporate/divalpoex sodium) is a drug used in children with absence seizures who are akso prone to tonic clonic seizures....my daughter currently takes 375mg twice a day bc the ethosuximide (Zarontin) did not keep them in control, she has never had a TC seizure....I have been told that my son who currently is on Tegretol will be changed to Epival if the Tegretol does not show improvement in his seizures....

Just a thought...I hope it may help a bit

Good luck and all the best, I really hope you are able to find your son some relief soon...one of our biggest issues with the Tegretol my son takes are the side effects...i understand your worry and concern in regards to that.

Karen-mom to Kiana 10(absence E on Epival) Nicholas & Alexander 9 and Ethan 4(primary generalized tonic clonic seizures on Tegretol,intestinal dysmotility,delayed gastric emptying,GERD,nutritional malabsorption,100% G tube dependent)

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