Friday, May 17, 2013


Wednesday, December 14, 2011

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. 

No comments:

Post a Comment