Friday, May 17, 2013

Head, Shoulders, Knees and Toes...

Monday, April 8, 2013

Head, Shoulders, Knees and Toes....

The seizures continue with Eliah every couple days.  Some days they are mild and manageable, and some days they are strong and scary.  Yesterday morning was one of the scariest seizures;  Eliah stopped breathing for more than a minute (almost two), even with me giving him a couple breaths.  The following video was taken to show the Neurologist what we're currently dealing with.

I'm currently waiting for a call back from the Neurologist about Eliah's medications.  He's increased his Vimpat twice in the past few months, and we will potentially increase it again.   Eliah builds up a tolerance very quickly, and his body metabolizes his medication too fast.  We had labs done a couple months ago, and it showed barely any medication in his body at the time.  He also tested significantly deficient in Vitamin D; partly from not getting enough sun, and partly as a side effect from Vimpat.  I've started giving him supplements and trying to get him in the sun, but the sun also causes seizures.  It's a vicious circle.

The other option is to try another drug called ONFI (Clobazam).  I'm hesitant to try because of the interaction with his blood pressure medication, and from what I understand, it's a very strong sedative that causes a drunk-like state.  Eliah's doing so well with school and therapy right now, that I hate to mess that up.

In other news, Eliah has had some leg/hip issues.  For a few years now, Eliah's right leg has been longer than his left, and we feared that his hips were coming out of socket.  Last month, when putting him in his wheelchair, I noticed that his right leg stuck out much further than usual, so his physical therapist consulted with the doctor.  We had x-rays done in March, and had our consult with the Orthopedist this morning.  I snapped a photo of one of his x-rays (below).  

According to the Ortho doc this morning, Eliah's hips are both partially dislocated.  His right leg is, in fact, larger than the left leg.  Due to Eliah's Cerebral Palsy and brain damage, his Neuromuscular system is sending misinformation about where his body should grow and develop.  Over time, this system will cause both hips to completely dislocate.  There is nothing that will prevent that from happening.  

At this point in time, the doctor said that the way to fix the current problem is to do a very long and intensive surgery addressing three issues.  They would have to cut his hip bone, and cut part of the tops of each femur in order to get them into the correct spots, then screw and pin it all into place.  Once that is done, they would put him in a body cast for six months.  At the end of six months, they would operate again to remove the pins and screws.  

However, due to Eliah's severe Hemophilia and his seizures, the doctor does not feel that it would be helpful in this situation to do his surgery.  He explained that, even with regular people, it is very difficult to stop bleeding when cutting bone.  Add Eliah's Hemophilia to the mix, and he could bleed out on the table.  And because this surgery would be such a big stress on Eliah, his seizures (and lack of breathing during seizures), would be another major obstacle.  On top of THAT, the cast would come up to his chest, making it very difficult, if not impossible, to give him CPR.  And there are no guarantees that the surgery would even work.

If we do leave him the way he is now, his hips will dislocate.  If that causes him pain, like his leg bones rubbing against his hip bones, they would consider doing a surgery to remove the tops of both femurs.  And again, there is that problem of excessive bleeding when cutting bone. 

So, that is what has been going on with Eliah.  He has school almost every day and loves his tough teacher.  Molly (our doggy) is still taking good care of Eliah by telling us when he's going to have a seizure.  Eliah is still a happy boy and we will always hope for the best.  I'm very thankful for all the people that check on him and pray for our family.  


  1. Since you have 118 posts re-posted so far; has 139 posts (with all the text and pictures - so all the pictures are still on your Picasa account), starting from May 29th , 2007.

    Save to local XML file for a local copy of all the posts (view in Opera)

    I'm guessing you got the posts recovered using URLs like , , ?

  2. Hi Im new in this blog, but it makes me feel like we are not the only ones with the same issues, but I just want to tell you congrats on everything , my son has cp as well, he just turn 7 last month, and is the first time I listen some one with almost exactly problem, he just past for the hip problem, apnea seizures, turns blue and stop breathing.Just want to say you have a beautiful child......