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seizures post surgery/medication

seizures post surgery/medication

My 28 yr. old son was diagnosed with a non-germinomas, teratoma with immature cells, tumor on his pineal gland on 6-5-2000. This was discovered after he had several grand-mal seizures. The tumor was removed, he then received stereotactic radiation for 7 weeks. His vision in his left eye had been severely compromised and it does not track correctly. This had been slowly improving. Other than symptoms that one would expect after all this, his general health was OK. One month after he finished radiation, he began having what was diagnosed as vertigo. He would lose his balance, one hand would shake and he was disoriented. This occured about 2x weekly. He was seen at the ER on these occasions. Then shortly after New Years, he had another grand-mal seizure. He had a small stroke at the same time. He was seen by his neurologist again, who put him on Dilantin. 500mg per day, progressing to a daily doseage of 800mg per day now. (He has yet to reach a theraputic blood level)He has 4-8 seizures per week. He suffers from slurred speech, uncoordination, hand tremors, he has word aphasia, has impaired vision in the left eye ( which again, doesn't track correctly), sleeps only several hours at a time, fatigue and has short term memory problems. He has also recently been diagnosed with low thyroid and has been placed on synthyroid. His neurologist said that he was depressed and to "get some balls and go back to work". When asked about different medication, we were told not to worry about it. He has periodic MRI's and EEG's, both with negative results. What should we do now? Please help.
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I'm sorry to hear about everything your son has gone through. Some of his symptoms sound like they could be related to dilantin. With doses that are too high (although your son;s are subtherapeutic) patients can get tremor, slurred speech, and coordination problems.  Also, the drug itself can cause fatigue and sedation. In the year 2001, we have a multitude of new seizure meds like Topamax, Lamictal, Zonegran, and Keppra to name a few that could certainly help him and may not produce wuch unwanted side effects as those your son may be experiencing.  Also, they don't need to be monitored with levels. I'm glad your son's tests have been normal, but I feel that he needs more attention to controlling his seizures. Consider seeing an epileptologist (seizure neurologist) or going to an epilepsy center where he can get specialized care. Your son has many options. Good luck to both of you.
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