Wednesday, June 20, 2012

Myoclonic Seizures

What we originally thought were muscle spasms the doctors now think were myoclonic seizures. After he had the big seizure early Saturday morning, he should have recovered within 24 hours or so, but instead he got worse as time went on.

The doctors think that because these smaller "spasm" seizures kept occurring it wasn't giving his brain a chance to rest and recover, which is why he just kept getting worse until they gave him an extra dose of his anti-seizure drug at the hospital. We didn't count the seizures, especially since we thought they were muscle spasms, but between Saturday afternoon and Sunday afternoon he must have had close to a hundred of them. So now they've  given us a "rescue drug" to administer to him, should he have episodes like that again. It should keep him from getting to that "altered state" he was on Sunday when he couldn't see.

 He hadn't had any since early Monday morning, but he just had a couple (about 4 of them) an hour ago when were were walking around Michael's  craft store looking for iron-on letters to make shirts for our trip to Disney. He was very uncomfortable and each one made him jump and let out a small yelp of pain. His eyes started to get glassy so we rushed out of the store, but thankfully they stopped as we put him in the car and Beauty and the Beast started playing on his DVD player (thanks Sarah, I'll get it back to you soon!) It was just around time for his second dose, so we're going to ask the Dr about spreading out his current morning/evening doses of 1.5 ml to 1ml(his old dosage) 3x a day since the drug isn't time release and we think it was "wearing off" when he started having the seizures.

We brought him to the pediatrician this morning just to look him over and check his vitals to follow up on his hospital visit. All looked good, except I was right, he's lost a pound since his April visit. The regression of his fine motor skills is really impacting how much food he's taking in, and Chris and I try to help feed him but he's so accustomed to feeding himself that he gets frustrated with it all and won't eat as much. So we're trying to fatten him up a bit, tonight he had  a plate of pasta with spinach and alfredo sauce, peaches without the syrup rinsed off and a bowl of peanut butter ice cream with whipped cream on top. He was a very happy boy! 

Tomorrow we are going to the firehouse to drive firetrucks! Yah!

Here are some of our special moments from yesterday and today:

Dragon in the Box is funny

Eating Dinner on the couch and watching the Red Sox with my Daddy

1 comment:

  1. Katie: I can't wait till tmr,seeing Ollie having fun will be great. I pray for u all!! God Bless