Hi -
I decided to join this group because I have a 15 year old daughter who has nocturnal seizures. They are complex partial seizures, but they seem to be more tonic-clonic over the past couple of years. She was diagnosed at age 11 but she told us that she'd had one the year before, in the morning before she got up out of bed. She assumed we knew but we didn't.
A few months ago, her friend's mother told me she was sure that she saw M. have a petil mal seizure during the day. This occurred just before M. was diagnosed, about 4 years ago. Her friend's mother wasn't sure what was going on until she recently watched a video on seizures which I posted on Facebook. We have never witnessed her having a seizure during the day when she's fully awake and as far as I know, she hasn't had another one.
M. was also diagnosed with PDD-NOS (pervasive developmental disorder, not otherwise specified). She has some symptoms of autism, but not all, and although she has a mild cognitive delay and a slight problem with speech, she is high functioning and has more social ability than some other kids on the autism spectrum. She's really a sweet kid. The only thing I would change about her is her damn seizures. She's missed a lot of school lately because of them. Having one wipes her out and she has to sleep for several hours afterward. She also gets frequent headaches.
We've had quite a time with meds. Either they've become ineffective or they have horrible side effects, or both. Right now, she's on Keppra which recently had to be increased, and Lamictal (at a level which won't cause her to throw up, supposedly). I hope she can get off the Lamictal soon but we have to wait until next month when we see the neurologist. We've heard horror stories about Keppra but so far, there's no side effects although she was sick to her stomach on one occasion. That might've been the Lamictal.
I worry about my daughter's future and her well-being. I've read other posts from adults here, how they've been discriminated against because of their seizures. I'm from Canada but I'm sure the situation is similar here. My daughter is perfectly capable of holding down a job, but with her PDD-NOS and epilepsy, I wonder how easy it will be for her. She shouldn't have to go on disability (which is a joke here, btw) just because of discrimination. My husband and I are prepared to take care of her the rest of our lives but it would be nice for her if she could be self-sufficient. We won't be around forever.
My husband has complex partial seizures too, although all the tests show nothing. He started having them in his early forties. He would always go into status epilepticus (spelling??) and ended up in the hospital every time. After going for 5 years seizure-free, he went off his meds. Unfortunately he had a seizure last summer. The neurologist says he will have to be on meds for the rest of his life. Once he's on his maximum dose, he doesn't have seizures which is one good thing.
I had auras when I was a teen but after being on meds for a year, I was "cured". So I have to wonder if there's a family disposition toward seizures. There's no history of autism, though, as far as I know.
Anyways, that's our story. Thanks for reading it.
M2M
I decided to join this group because I have a 15 year old daughter who has nocturnal seizures. They are complex partial seizures, but they seem to be more tonic-clonic over the past couple of years. She was diagnosed at age 11 but she told us that she'd had one the year before, in the morning before she got up out of bed. She assumed we knew but we didn't.
A few months ago, her friend's mother told me she was sure that she saw M. have a petil mal seizure during the day. This occurred just before M. was diagnosed, about 4 years ago. Her friend's mother wasn't sure what was going on until she recently watched a video on seizures which I posted on Facebook. We have never witnessed her having a seizure during the day when she's fully awake and as far as I know, she hasn't had another one.
M. was also diagnosed with PDD-NOS (pervasive developmental disorder, not otherwise specified). She has some symptoms of autism, but not all, and although she has a mild cognitive delay and a slight problem with speech, she is high functioning and has more social ability than some other kids on the autism spectrum. She's really a sweet kid. The only thing I would change about her is her damn seizures. She's missed a lot of school lately because of them. Having one wipes her out and she has to sleep for several hours afterward. She also gets frequent headaches.
We've had quite a time with meds. Either they've become ineffective or they have horrible side effects, or both. Right now, she's on Keppra which recently had to be increased, and Lamictal (at a level which won't cause her to throw up, supposedly). I hope she can get off the Lamictal soon but we have to wait until next month when we see the neurologist. We've heard horror stories about Keppra but so far, there's no side effects although she was sick to her stomach on one occasion. That might've been the Lamictal.
I worry about my daughter's future and her well-being. I've read other posts from adults here, how they've been discriminated against because of their seizures. I'm from Canada but I'm sure the situation is similar here. My daughter is perfectly capable of holding down a job, but with her PDD-NOS and epilepsy, I wonder how easy it will be for her. She shouldn't have to go on disability (which is a joke here, btw) just because of discrimination. My husband and I are prepared to take care of her the rest of our lives but it would be nice for her if she could be self-sufficient. We won't be around forever.
My husband has complex partial seizures too, although all the tests show nothing. He started having them in his early forties. He would always go into status epilepticus (spelling??) and ended up in the hospital every time. After going for 5 years seizure-free, he went off his meds. Unfortunately he had a seizure last summer. The neurologist says he will have to be on meds for the rest of his life. Once he's on his maximum dose, he doesn't have seizures which is one good thing.
I had auras when I was a teen but after being on meds for a year, I was "cured". So I have to wonder if there's a family disposition toward seizures. There's no history of autism, though, as far as I know.
Anyways, that's our story. Thanks for reading it.
M2M
