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UPDATED: Thu, 11/05/2009 - 12:39pm

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stephof3
stephof3

Hi they want to take my daughter off her meds. not sure what to do

Hi I am new to this but my daughter is going to be 18 soon and the doctor wants to take her off of her meds,  She has petit mal seizures so they ask if she has had any and I really don't know.  She also has learning delays so sometimes she may not tell me either.  I haven't thought that she has had any seizures in several years but I am not sure.  The doctor said it is up to me if I want to take her off the meds and of course I don't want her to take something she don't need but I am scared. Please help.

By stephof3 at Thu, 11/05/2009 - 12:39pm | 27 views | 4 comments

Recent Comments on this Discussion

first i am a 18 year old patient with grand mal seizures. i personally think you should try to decrease her dosage first. then you should go from there. if your daughter wants someone to talk to feel free to message me. i can totally relate to her condition. its hard trying to live through highschool with epilepsy. they had to decrease my dosage to 750 mg from 1000 mg. it also depends on her type of medication.

if you have any questions feel free to talk to me. and if your daughter just wants a penpal like herself. contact me.

babygi...

Well, for starters, the doctors are going to say that every time she is at least two years seizure free with the medication.  This has happened to my mom about me multiple times because I was diagnosed at 10 months old, and they would put me on a medication that would work keep me on it, then try something else and have to put me back on the one that worked.  Every time I was two years seizure free on the medication they would ask my mom about taking me off the medication-they thought I would outgrow it, but I didn't.  I'm 22 and still on the medication that has always worked for me, now I take care of things myself with a little help from my mom when I switch doctors because I was too young then.  Your daughter may not even know when she has a seizure. 

If you are unsure about what to do, my recommendation to you would be to keep her on the medication until you feel comfortable taking her off of it(for the doctors to do it, you would have to know that she is two years or more seizure free for sure).  Taking her off medication can cause problems like it did with me where in some cases when the doctors try to take someone off medication and they have one or more seizures and the doctors try to put them on medication again-the medication doesn't always work right then and there is a lot of switching of medication or sometimes even more than one required. I really hope this helps you.

jewels87

Well, for starters, the doctors are going to say that every time she is at least two years seizure free with the medication.  This has happened to my mom about me multiple times because I was diagnosed at 10 months old, and they would put me on a medication that would work keep me on it, then try something else and have to put me back on the one that worked.  Every time I was two years seizure free on the medication they would ask my mom about taking me off the medication-they thought I would outgrow it, but I didn't.  I'm 22 and still on the medication that has always worked for me, now I take care of things myself with a little help from my mom when I switch doctors because I was too young then.  Your daughter may not even know when she has a seizure. 

If you are unsure about what to do, my recommendation to you would be to keep her on the medication until you feel comfortable taking her off of it(for the doctors to do it, you would have to know that she is two years or more seizure free for sure).  Taking her off medication can cause problems like it did with me where in some cases when the doctors try to take someone off medication and they have one or more seizures and the doctors try to put them on medication again-the medication doesn't always work right then and there is a lot of switching of medication or sometimes even more than one required. I really hope this helps you.

jewels87

You pay the Dr, your the Boss not them. They work for you really. Is he/she a neurologist? or a family Dr? If it's not a neurologist then get one and if it is then get a different one. Someone telling you to drop medicine and play lets see if they have a seizure game sounds like a bad idea to me. How about an EEG? How about a very slow approach since it's someone's life. I too have Epilepsy and Doctors will tell you what to do. Politely but firmly tell them what you want. Not the other way. It's your child not theirs.

Best of luck to you.

John Howe