Hello. My 40 year old son (unmarrried, lives at home) had been seizure free for 15 years on Neurontin and phenobarb. He lived an active life, driving, MA degree, thesis work in England...started his own small film production company. He's been an EMT for 11 years...loves helping people. However, he has always worked nights and during the last eight months or so he would often skip is midday dose of Neurontin because he was sleeping. I guess we had all become complacent after so many years of being seizure-free. Sure enough, his auras returned and then he had a breakthrough partial generalized seizure in early December. Life changed drastically for him. Regaining control looks like it will be difficult. He has been away from work for two months (leave time), not driving, more or less homebound. My heart breaks for him.
The doctor started him on Keppra about 6 weeks ago and he was just raised to 3000mg. per day. Auras may have decreased somewhat but he still has some simple partials that have become longer and scary for us all. We've gone from normal lives to someplace totally different. He will see his doctor in about a week and he will probably say the Keppra is not working. (We even bought the brand at a cost of $1100 for one month. Crazy.) He takes the Keppra 1000 - 750- 1250. Could this be part of the problem - would twice a day dosing be better?
My son has always been controlled on meds but he had to stop some due to side effects (dilantin - pericarditis; tegretol - low white count; lamictal - hives). We're frantic. My husband and I are both retired and in our sixties and afraid that one or both of us will have a breakdown and then who will be there for my son? He is cared for by a world reknowned neurologist, thank God, but visits for the past few years have been five minute checkups because things had been going so well.
I am amazed at the stories of courage I read. I am so down and depressed I am ashamed of myself. Any words of support or encouragement, of hope for our situation, would be greatly appreciated. It's just the three of us...no real support group. Thanks so much.
The doctor started him on Keppra about 6 weeks ago and he was just raised to 3000mg. per day. Auras may have decreased somewhat but he still has some simple partials that have become longer and scary for us all. We've gone from normal lives to someplace totally different. He will see his doctor in about a week and he will probably say the Keppra is not working. (We even bought the brand at a cost of $1100 for one month. Crazy.) He takes the Keppra 1000 - 750- 1250. Could this be part of the problem - would twice a day dosing be better?
My son has always been controlled on meds but he had to stop some due to side effects (dilantin - pericarditis; tegretol - low white count; lamictal - hives). We're frantic. My husband and I are both retired and in our sixties and afraid that one or both of us will have a breakdown and then who will be there for my son? He is cared for by a world reknowned neurologist, thank God, but visits for the past few years have been five minute checkups because things had been going so well.
I am amazed at the stories of courage I read. I am so down and depressed I am ashamed of myself. Any words of support or encouragement, of hope for our situation, would be greatly appreciated. It's just the three of us...no real support group. Thanks so much.