Sudden seizures in 26yo MR girl, underying causes?

[Kedwards]

I have a 26 yo mentally retarded daughter who started having seizures 2 months ago.  She had an EEG,and Cat scan which were both normal.  When I inquired about an MRI, her doctor said he didn't think it was necessary---since someone mentally retarded already has brain damage--and seizure activity is not that unusual.  Should I go with his opinion, or keep pursuing the MRI?She was on Phyentec 300 mg/day, but had her level drop to 2.5 and had a status epileptus episode....now we are on dilantin 400 mg; 200mg in AM, 200mg PM---hopefully this will work.

[dollyn]

I would push for the MRI and change doctors if you have to.

It seems to be that a lot of these doctors don't want to do anything they don't have to.And us parents have to push for things.

I pray for you and your family.

[TaraMom]

I have been doing a lot of research on epilepsy medications for my daughter.  I started researching Phyentec and your story is the only place I can find it.  Is this a generic for a well-known epilepsy drug?  I cannot find anything else about it.  I hope your daughter is doing better.  My 15-year-old daughter has been suffering from seizures from encephalitis for over 3 years and we have only seen her worsen.  I don't know how these posting sights work -- so here is my email address:
***@****
Thank  you and best of luck.  

[DragonTU84]

I would still push for the MRI. I cannot believe a doctor would even THINK of saying something like that!! You have every right to try to find the root of your daughter's seizures, especially with a sudden onset like that. It is very possible it is NOT structural (which the MRI will determine) but something else going on completely, especially with the onset of seizures this late in her age. It very well could be autoimmune or chemical in origin. I'd recommend getting a complete bloodwork on ANYTHING that could be causing her seizures, as well as going in for the MRI. I wish you and your daughter the best of luck!

I'd also change neurologists. Yours sounds like a quack, and there are better fit doctors out there who actually CARE for their patients, whether they are disabled/mentally ill or not.