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Felbatol, 2015

Sat, 02/28/2015 - 14:25

My 14 year old daugther with complex partial seizures and a left posterior partial hemispherectomy has been taking 8 cc of Felbatol for the past 12 years.  Once in a while her white blood count gets a little low, but we have had no other big problems.  She has always had insomnia though.  Anyway, her seizures are increasing from just 2 a year to 3 or 4 a month. (Which is still a blessing compared to where we started out at near constant seizures at 1 year old)  But we are trying to get these seizures stopped and are in the middle of chaning her medications from Felbatol and Trileptal  to Felbatol and Topomax.   

To my question finally:  The doctors wanted us to take her off the Felbatol stating that none of their other patients in two very large hospital practices were on the medication due to its dangerous side effects.  We chose to stay on it because it has been the only medication to keep the seizures away.

Anyone out there a long time Felbatol prescriber?  Any thoughts on Felbatol, or Felbatol and Topamax?  Thanks!  Cy

Comments

I ead your post and

Submitted by just_joe on Sun, 2015-03-01 - 12:00
I ead your post and understand you want th best for your daughter. In my situation it is me that wants better seizure control. I have read side effects to all of the medications I have taken in the last 50+ years. I do know that if I talk to my neurologist that they will look at all the medications I have taaken and prescribe a medication that they have given to some of their patients. Oh and yes their patients come from many hospitals in the Dallas area. Not being a doctor I tend to listen to them. I do ask queswtions before ever switching. I tend to think before I leap. In other words I discuss the issue an in your case I would be questioning the side effects he is talking about.  It is your decission but call the neurologist and discuss this issue with him. Find out what he says about the side effects are and do ask what he thinks the change will do for your daughter. will it stop all her seizures? Will it reduce the time in her seizures? I hope this helps and she gets th assistance she needs.

read

Submitted by just_joe on Mon, 2015-03-02 - 09:31
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Hi, My son's doctor just

Submitted by Anonymous on Wed, 2015-03-04 - 08:13
Hi, My son's doctor just prescribed Felbatol to my 26 year old son.  I will pick it up today.  I'm nervous for him to try it but nothing else works and he is still having partial complex seizures daily.  He vomits with his seizures so his weight is getting very low. He is already on Keppra XR, Lamitcal XR and Depakote. Does your daughter have many other side effects? Thanks

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