Video EEG Results and Go Forwad Plan

Today we met with our neurologist to get results from Joshua's 48 hour Video EEG from last week.  We received a bit of good news today in that Joshua's myoclonic seizures stop after he gets into REM sleep and he sleeps soundly the rest of the night.  Our neurologist was worried that he was having abnormal brain activity (e.g. "discharges") all night while sleeping, but she said after REM sleep his EEG was clear.  So, he is getting good sleep at night!  Yeah!

On the not as good side she said that some of the discharges on the EEG were not correlating to any clinical activity that we could see which means that he is having some seizures that we cannot see, although I am not surprised by that based on his other two EEGs.  We don't know yet if we will ever get these abnormal discharges (without us seeing something) to stop, but it is too early to worry about that now - we are concentrating right now on the ones we DO see. 

I talked to her about his seizure reduction after we got home from the hospital last week and initially she didn't think it was caused by the Depakote bolis he received through the IV in the hospital because she said those only last about 8 hours.  But then by the end of our conversation she started thinking it might be possible, but she's not sure (it could have just been a coincidence).  In the end we decided to leave his Depakote dose the same for now because I don't want to endure the side effects if we are not for sure it will help.  Plus, we are making other changes so don't want to do too much at once.

We are going to add a med called Zarontin  to our regimen so he will be on 3 anti-seizure meds starting tomorrow.  Not sure what the side effects of adding this one into the mix will be, but it is worth a shot.  The neurologist is adding this to help with his absence (staring) seizures as they are becoming longer and longer.  The absence seizures becoming longer concerns her because she does not want these absence seizures turning into a "status" episode which is a prolonged seizure that can last hours to days and they can be very dangerous.  She thinks this new med might help with the absences, but we'll see. 

The other thing we decided is that we ARE going to go ahead with MAD (Modified Atkins Diet).  Yeah - feels good to have a plan!  The dietitian is going to call me to setup an appt. and then we will get started.  I'm really nervous, but also hopeful and excited that this could be our secret weapon that brings his seizures under control.  Chip and I are preparing for the big change and are already starting now to change some little things.  We could be on MAD within a few weeks. 

Another bit of good news (if you can call it that) is that I found a great website to track his seizures last night.  It is great and does everything I want and creates reports that you can print or send to the doctors and it's free!  I'm busily updating all my old calendars into this new tool, but it will take me awhile.  I put all his seizures in there today and I'm liking it already.  Bad news is that he had an Atonic head drop this morning and unfortunately he was standing in front of the kitchen table and smacked his head pretty good on the table.  He now has a mark below his right eye to remind us that we can never be too careful.  It might be time to try again to get him to wear his helmet, although he really hates it!  I hate the head drops - they just come out of nowhere and if he is near anything hard, he gets injured.  He's such a trooper though - a few minutes later he told me "put me down.  Can I play angry birds?".  LOL. 

On an unrelated note my debit card has been hacked!  Got a call this morning about fraudulent activity on my card so we cancelled them.  When it rains, it pours....................