Do these episodes sound like seizures?

[Travis' mom]

My 21 yr. old son had a craniotomy (large blood clot) at 2 wks. old and a shunt at 5 yrs. old. Was on phenobarb. until 3 yrs. old, not witnessed seizures until 12 yrs. old. Is now on 3 seizure meds. and is having these episodes - unsteady (will fall), dizzy, drooling, speech so slurred is not understandable, can't make his limbs "work". These happen at different times during the day, skipping some days. He sometimes has partial seizures (flashing lights) right before these. They have lasted as long as 1 hour and as short as 15 minutes. Original dr. said they are seizures, increased med., gave Ativan. 2nd opinion says "no epileptiform activity" after a 3 day EEG at home, without video. During one episode he became very stiff and unresponsive for 5-10 min. He always sleeps for 1-2 hours after these and feels very nauseous and irritable. Original dr. said "he could have a grand mal at any time" - what if he is right and 2nd dr. is not? 2nd dr. slowly weened him down to 1000mg of the Keppra - this did not help, partials he already had are worse. He is on 250mg of Dilantin and 3600mg of Trileptal also. Others who also have seizures that I have talked to have said "those sound like seizures" - we don't know what to do. This dr. is director of epilepsy program at our hospital, but he didn't look at any records, MRI films or CT films that I brought to our appt. - didn't want to see my seizure record for my son (he's disabled so I help him). It is very hard to watch these episodes and "do nothing". Any opinions or ideas would be very appreciated.

[KatieDee]

I also wanted to let you know about our experience with Trileptal.  When my son was on it, I noticed a major increase  in his seizure frequency.  The doc increased it and the seizures were worse.  I told him I felt the Trileptal was making things worse, so he added Keppra.  Still, no improvement.  It wasn't until he decreased the Trileptal that I noticed a major improvement.  He is on the lowest dose possible, 150 mg twice a day, and Keppra 250 mg twice a day and he's had great seizure control for a year and no side effects.  This neuro we have is great because he "thinks outside the box" and only looks for results, even if it means not giving the recommended dosing.  My son has been on so many different meds - high doses at that, with horrible side effects, that we had to find a new neuro who would listen.  Thank God we did.  I certainly would entertain the possibility that your son is over-medicated.

[Travis' mom]

I appreciate your response. We did get a 2nd opinion - he is the one who insists these episodes are not seizures, but are due to meds toxicity. He did a 3 day ambulatory EEG, without video, where my son was able to be at home. He says these episodes did not show epileptiform activity, but there were 2 others that were suspicious. However, I read an article that this dr. wrote about some partial seizures (temporal lobe?) do not always show up on an EEG. My son has previously been diagnosed with temporal lobe intractible epilepsy and also occipital lobe epilepsy.We are now decreasing the Dilantin (after already decreasing Keppra over 1 month). My son is not getting better with these med. changes - he almost seems worse at times. He has sores on the sides of his tongue and inside his mouth and is waking up with really bad headaches and nausea. He has some minor heart problems - ASD, "benign arrythmia", right bundle branch block, and BP has been running about 138/78, which is a little on the high side. He is also anemic, which was just recently diagnosed. I am not totally convinced this is a med. problem. We don't know whether we should keep trying these med. decreases and go along with the "2nd opinion dr." - the Dilantin has kept the tonic/clonic seizures away and we are nervous about decreasing it. The last time it was decreased in the hospital for epilepsy monitoring, he had a tonic/clonic, whereas he had only been having partials - that really "set him back" and made the partials increase. Sorry this is so long, but we are very concerned yet very confused about what to do next. Any comments would be appreciated.

[Meemster]

I had a very similar problem while I was on Trileptal.  I kpt complaining of worsening probs as you describe of your son, and my neuro increased my Trileptal.  I was taking 900 mg/day.  Then one day my 4 yr old dtr tried waking me up and she was crying, "Mommy, wake up, wake up"  In and out I could sort of hear her, like under water-ish, and I tried so hard to sit up in bed, but I would promptly pass out each time.  I missed my older children going of to school this day as well!  Eventually I forced myself to get out of bed and I climbed very unsteadily down the loft bed ladder (VERY scary) only to try and walk and hit into the wall as i did so.  I sat for hours in a semi-aware state until i was able to contact my neuro, who stopped the med.  I did not have a prob as bad as that until we tried using the Trileptal again.  Sorry I have no more to add, my neuro has yet to dx me (after 2 years!).  Good luck to your lil guy, I wish you the best!

[CCF-Neuro-M.D.-CS]

The spells you describe may or may not be epileptic seizures. If you are unhappy with your doctor, then I would encourage a second opinion with another epilepsy doctor. Sometimes patients may be placed into an epilepsy monitoring unit to determine if particular spells are epileptic. I am not sure if this is a possibility for you, but you could ask your doctor about this option. Good luck