bandmom
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Hello everyone, I haven't posted here in years but still occasionally come here for the wealth of information and advice.
In case no one remembers me, my 22 year old daughter has uncontrolled partial complex seizures. Over the past 8 years she's been on Trileptal, Lamictal, Lamictal with Vimpat, Keppra (only lasted 5 days), Trileptal with Vimpat, Zonegran with Vimpat, Vimpat alone, and now Tegretol with Vimpat. Her seizures have increased from a couple per week to a couple per day over the past few months. Seemed to get worse when she tried Vimpat alone and her dose of Vimpat was raised. Tegretol hasn't done anything to help, and in fact I think has only made it worse. When I asked if the higher dose of Vimpat could be the problem the doctor didn't think that was possible.
She managed to get a degree in Physics and studied abroad for four months in Scotland. Most of the time she was in college she was on Lamictal, which I preferred because it seemed the "safest" as far as unwanted side effects. She plans to go back to Scotland for a year of grad school in engineering this fall. I don't feel as confident sending her as I did the first time she went, we really have our work cut out for us to try to get some improvement before she goes. I'd like to focus on nutritional aspects too. Have read here about Magnesium and Vitamin D as possible factors. Doctor says her last Magnesium level taken in November was normal though. She's got some depression and anxiety but hasn't gone very far with the therapy recommended by her doctors.
And I feel like we're never satisfied with her doctors, she's changed several times and I don't want her to be labeled a difficult patient who can't pick a doctor, even though I think she has a right to keep changing until she finds the right fit. She's been to both major Cleveland hospitals, now we're considering going back to the first one again, after leaving it for the other one 3 years ago.
She doesn't like the idea of joining the forum herself, although I've suggested it many times. Her lack of independence and not driving is getting to her lately, which is a major reason why she wants to return to Scotland. Much better public transportation gave her the feeling she could do whatever she wanted there. Sorry if this was a bit long!
In case no one remembers me, my 22 year old daughter has uncontrolled partial complex seizures. Over the past 8 years she's been on Trileptal, Lamictal, Lamictal with Vimpat, Keppra (only lasted 5 days), Trileptal with Vimpat, Zonegran with Vimpat, Vimpat alone, and now Tegretol with Vimpat. Her seizures have increased from a couple per week to a couple per day over the past few months. Seemed to get worse when she tried Vimpat alone and her dose of Vimpat was raised. Tegretol hasn't done anything to help, and in fact I think has only made it worse. When I asked if the higher dose of Vimpat could be the problem the doctor didn't think that was possible.
She managed to get a degree in Physics and studied abroad for four months in Scotland. Most of the time she was in college she was on Lamictal, which I preferred because it seemed the "safest" as far as unwanted side effects. She plans to go back to Scotland for a year of grad school in engineering this fall. I don't feel as confident sending her as I did the first time she went, we really have our work cut out for us to try to get some improvement before she goes. I'd like to focus on nutritional aspects too. Have read here about Magnesium and Vitamin D as possible factors. Doctor says her last Magnesium level taken in November was normal though. She's got some depression and anxiety but hasn't gone very far with the therapy recommended by her doctors.
And I feel like we're never satisfied with her doctors, she's changed several times and I don't want her to be labeled a difficult patient who can't pick a doctor, even though I think she has a right to keep changing until she finds the right fit. She's been to both major Cleveland hospitals, now we're considering going back to the first one again, after leaving it for the other one 3 years ago.
She doesn't like the idea of joining the forum herself, although I've suggested it many times. Her lack of independence and not driving is getting to her lately, which is a major reason why she wants to return to Scotland. Much better public transportation gave her the feeling she could do whatever she wanted there. Sorry if this was a bit long!
