what to expect with 1st visit to epilepsy clinic

[debbie1414]

my daughter is 28 and has had epilepsy for 2 1/2 years. no seizure for 1 year, but aura's in december which her local neurologist increased med dosage. She's been on several meds since diagnosis and has had many different side effects with each one. Are we doing the right thing by seeing a neurologist in cleveland, or is this is how she has to live the rest of her life--meds, side effects etc. does anyone think were wasting time going there? also what should we expect our first visit and how long should we expect to be there.?  will they consult with her local neurologist on meds, treatment etc when she returns home?  She's lost way too much weight on topamax,had to quit her acct. job due to cognitive issues, and she's really down. please help!!

[spastic]

Hi Debbie, I guess I didn't know Topamax can help seizures.  I always hear the usual meds like gabapentin, tegretol, depakote.  All of which have some side effects like gaining weight.  Does your daughter have Grand Mal seizures?

I have heard the Cleveland Neuro team is a good one, I know of a few who go there for the MS clinic and have heard nothing but the best about them.  I hope they have answers for you and your daughter.  I hope you are writing all of your questions out.  I tend to freeze up around the Dr's and refer to my notes and questions.

Your daughter has gone through the wringer, medically speaking.  I'm sorry she had leukemia, that must of been hard on all of you.  It sounds like a good question for the Dr.  I don't think you will be sorry about going there.  I'll be thinking of you guys, please keep me updated.

Your Friend,

Ada

[debbie1414]

thank tou so much for encouraging me to keep our plan with cleveland clinic.  Any encouragement we get is very helpful and reassuring. my daughter is so excited to go, I just hope she's not dissapointed. But, I think having this second opinion with specialists will help her gain more insight into her epilepsy, med problems, etc. She's currently on topomax for seizures--she's never had migraines. When she was 7, she had leukemia, with frequent spinal taps and intrathecal meds. I am going to ask a dr. if that can cause seizures so many years later, and if that is the case, if that may change her treatment regimen. we just have so many questions, but I sooooo appreciate your response to my questions. thank you

[spastic]

I am so sorry your daughter is having so many problems right now.  I am a friend of the forum and I hope Dr Abhijeet will reply but in the meantime I would like to try to help.

I think it is a great idea for your daughter to go to an epilepsy clinic.  They are better equipped and more knowledgeable than the average neuro.  The specialize solely in treating epilepsy. They might have a much better insight for your daughter.  I don't think you will be wasting your time.  I am sure the initial visit will be lengthy, they will probably want to do an EEG, maybe an MRI before they come up with a treatment plan for her.  They should consult with your daughters neuro and go from there.  Most neuros will comply with the specialists.

The side effects of medicine is a controversy for everyone.  There are so many pros and cons of medication, I'm sorry your daughter is having a hard time with them.  What meds are you daughter currently on?  Is the topamax for migraines then?

I just wanted to welcome you hear and give my two cents worth, I am a friend here and love to help so message me anytime, Dear.  I wish your daughter the best.

Your Friend,

Ada