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On our 7th medication, disagree with the dr about which one works best

Sat, 05/27/2017 - 16:41
We have no local neurologists so after traveling to see several and going to the Mayo Clinic my son has tried 7 medications. My son just turned 18. He has complex partial seizures (right temporal lobe), only a few have happened while awake in the past 2 years, these are mostly at night. He has daily absence and occtipical lobe seizures. He has 3 grey matter hetertopia, one large one in his occtipical lobe. 1.Keppra is a no. He got upset and angry and he has always been a happy kid. I saw little change on this med 2.Oxcarbazapine , This seemed to work ok for the partial complex seizures for about 6 months. After 6 months my son said the side effcts during the day were too much to handle, dizzy, forgetting, weird speech issues and the med did nothing for the other seizures. We tried adjusted doses for 2 months and the side effects were too much still. 3.Lamictal , did nothing, no side effects but no benefits 4.Ethosuximide My son said this helped him "control" or shorten the absence and occiptical lobe seizures, not make them go away but he could catch or stop them? No side effects 5.Klonopin, this was for emergency situations but stopped seizures 100% for about 3 days after taking it. Plus my son has severe social aniexty and it seemed to help this. It was like he was a different kid for a few days when he took it. 6. Tegerol my son was so tired he could not do anything more then school and sleep for 14+ hours a day, tried adjusting times and doses. 7. Phenobarbital way too tired, not only slept all the time at home but fell asleep in class. Felt out of it. My son feel like Ethosuximide is what helped him the most. His PCP prescribed this while we waited to see a neurologist. None of the neurologist we have seen, want to use this drug? My son also feel like klonopin has helped him maybe more manage the fears and aniexty but it was the second best medication to him. No neurologist wanted this long term, though his psychologist was very excited about how it helped so I guess we could get on the wait list to see a mental health professional and get this prescribed? The Mayo is pushing Lamictal but it is not helping him. he likes that it is a small pill and has no side effects but there has been no benefits. I appreciate the Mayo looking at side effects and quality of life with medications, but this drug isn't stop the seizures at all. The pedatrtic neurologist we had seen who will be dropping my son by age 19, wants the Oxcarbazine. He doesn't understand the side effects are ruining quality of life. We are only able to see a neurologist every 6 months due to travel and availability of appointments. We are currently looking to move but until then, is it wrong to demand what works for my son? I usually am a vocal advocate but since we have so few neurologists I don't want one to get mad a drop us because we would have no other options. My son's PCP dropped him when he got dx with epilepsy which I had no idea could happen and since then I have been tip toeing around doctors in fear since there are so few where we live.

Comments

generally benzodiazepines are

Submitted by Amy Jo on Sat, 2017-05-27 - 17:42
generally benzodiazepines are not a good choice long term for a number of reasons (effect can wear off requiring increasing dose and then getting off them is another problem).have you tried dietary therapy or having his enzymes checked (maybe it would explain some issues you've seen, maybe it could identify which drugs are best to consider)?

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