Zzzzzzzzzz....Seize....Zzzzzzzzz

When I talked with the Neurologist about Eliah's EEG the other day, he explained that there is nothing really to do right now but increase his current medication and see how it goes.  He did say there were other medications we could try, but most just make Eliah comatose because they shut down too much of his brain.  At least with this medication, his waking hours allow him to grow, learn and develop. 

Also, the next medication to try seems to inhibit platelet function, which would be detrimental to his Hemophilia.  So, we increased his current medication for the 4th time.  Basically, we will keep increasing this medication each time the seizures breakthrough on a regular basis until he is at the maximum possible dose. 

The increased medication makes him sooo sleepy.  You can see it on his face about 20 minutes after taking it, he just can't keep his eyes open.  He sleeps until around noon each day, and still struggles to wake up then.  With each increase, he sleeps longer and longer. 

Eliah had two seizures on the Saturday following the EEG, and Kelley had to breathe for him.  Then another big one last night at Kelley's.  I'm waiting today to see what he's like when he wakes up. 

Also, I just got off the phone with Eliah's Occupational therapist.  They have currently canceled all of his upcoming appointments until they can decide what to do with him.  All of his therapists are concerned that he will have a seizure during a therapy session and they are not properly prepared.  In addition, it's likely a major liability to have them treat Eliah during an emergency.  So, they are currently in meetings and discussions to determine what they can have to be prepared and what protocol to follow. 

I wish there were answers or solutions for my little man.  But there aren't any right now.  We just have to treat him as new issues arise and pray that he makes it through each day.  In the meantime, I contacted Make-A-Wish Foundation to try and help Eliah do something special.  I doubt he will be able to go on any trips because of his complications, but maybe he can get some special needs playground equipment or something along those lines. 

And Now We Wait.....

We've been home from the hospital since yesterday afternoon.  Getting all the electrodes and superglue off Eliah's head was just as traumatic as getting them all on.  He was exhausted from being up all night (me too), and every time he fell asleep in the morning, they wanted me to wake him back up.  It made it so much more difficult.  But, once home, he slept peacefully in my arms.  I napped sitting up, since he wasn't going to let me put him down.

The Neurologist called last night to tell me that he caught one staring seizure on the EEG, but that he wanted to review the full 24 hours and call me either today or Monday to discuss.  And since Kelley has the kids this weekend, I slept peacefully last night.  Well, I basically passed out from mental and physical exhaustion. 

When I awoke this morning, I saw an email from Kelley.  Eliah had another big seizure just a half hour ago, where Eliah stopped breathing and turned blue.  Kelley had to breathe for him.  They seem to be so frequent now.

Eliah has now adopted three types of seizures.  The old kind, where he turns his eyes to the side, his mouth quivers and he stops breathing.  The new kind, where his eyes dilate, pop straight out, his body gets completely stiff, and he stops breathing (like in Total Recall, when Arnold's helmet comes off and there's no oxygen).  And lastly, the kind where he stares to the side and holds his breath. 

All of them are scary.  And the Neurologist was telling me on Tuesday that on his short EEG, the abnormal activity wasn't in the Temporal Lobe like it used to be.  It's now in both Occipital Lobes.  What does that mean?  Well, it means it is affecting the visual part of the brain.  It's likely that when he has a seizure, he sees visions, hallucinations, weird colors and shapes.  It's all probably very scary for him.  And there's about a million possibilities of what could be causing activity in that part of the brain.  Some of those possibilities have cures, some don't. 

We don't currently know what's going on with Eman.  We don't even know if the 24 hour EEG will tell us anything.  All we know right now is that he is getting worse.  We just have to wait and see what the doctor says and what his next step is going to be.   In the meantime, we give our little man lots and lots of love.....and oxygen.


UPDATE:  Eliah just had seizure number two this morning.

EEG Day

We arrived here at the new Epilepsy Unit in the Children's hospital at 9am.  And Eliah had to check out our room. 

After he had a good look, he started getting sleepy. 

Then he kind of passed out....

He soon woke up when they started attaching the electrodes with heavy glue and an air compressor.  It was about 45 minutes of high-pitched screaming.  But when it was over, I got him calmed down and snuggling. 

He's currently playing, snuggling, and eating chocolate chips.  Only 23 more hours!!!