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Hi Kerry,
May I know how often does Keegan consult his neurologist? From your sharing, it seems you called for an appointment after he experienced side effects. I understand the nature of our condition may be a little different, but it’s still to control seizures and mine is normally short with a couple of more “significant?” ones ~ 2x /month. I fix an appointment only after finishing a consultation, thus it’s after ~ 3 months with another combination of same med. Is that stretching it too long? What does everyone also think? I’m considering shifting to Taiwan for treatment.
Cheers,
Louis
P/S Gabapentin does nothing for me as well. It’s prescribed to stop the itch which may be one side effect of another medication
Replies to "@keeg1010 Hi Kerry, May I know how often does Keegan consult his neurologist? From your sharing,..."
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@louissc
Hi Louis,
Thanks for reaching out. For Keegan, when he was initially diagnosed, we saw our Mayo neurologist every 3 months. Once we were able to find the "right" combination of medications, both Lamictal and Epidiolex, we went to once a year. That is, unless we had a higher number of seizures occur. Then, I would call and schedule for as soon as they had an opening.
You said you fix an appointment approximately every 3 months only after finishing a consultation. Can you explain what you mean? For Keegan, when he was first diagnosed, we had our intial consultation and it was over 3 hours at Mayo and included history, MRI review, blood work, etc. Do you mean you follow up with your neurologist every 3 months? If you are experiencing side effects from the meds, I would follow up as soon as possible to discuss changes.
I'm not sure where you live but you said you were considering shifting to Taiwan for treatment? Is there a larger variety of medications available and are there better treatment options there? I would love to know more.
Thanks Louis!
Kerry