Sunday, March 17, 2013

Twists and Turns

Since my last post Ethan has taken a turn for the worst. He had 6 amazing days that were seizure free. Then he started having grand mal seizures in his sleep. We were shocked. He was doing so well. I just kept thinking..."This is not happening.." Then the doctor calls to tell us that his labs (the ones that we had drawn 5 days prior) came back with to much depakote in his system. In other words he was toxic. I was honestly quite angry that no one called right away. Now he was having grand mals because the medication was to high. So we reduced his depakote by half a pill on the evening dose. For the first 4 days he seemed to do well, then Sunday came. We thought we saw a slight drop in the morning. As the day went on he had more and more. I was so upset. Not again!! 

This last week has been really difficult. His body is adjusting to less medication and the drop seizures have been terrible. He is hitting the ground fast and hard. Just imagine dropping a bowling ball. Ya, that is what it sounds like when his helmet hits the ground. Also all of the crankiness has returned. I guess it would though, I mean if I was hurting myself that much I would be REALLY cranky.
Today was the the first day since the medication decrease that he has been happy. He is still starring a lot and dropping lots, but he seems a little happier.

SO now we have decisions to make. Lots of them. Do we continue with the diet? It doesn't seem to be working anymore, and it is making our lives crazy. The medication is making him toxic at an increasingly lower dosage. So we have to keep removing it. But that causes major fall out each time. He is losing more and more learning time. His cognitive skills are not going forward. We can no longer justify waiting for something to change.

We have been looking into both steroids and brain surgery. (Did I really just type that?) I can't believe that we are considering brain surgery. But then I think of all Ethan has been through in the last 2 years and I just want him to have a chance at life without falling on his face constantly. Generally with Doose Syndrome brain surgery is not an option. But we are looking a corpus callosotomy. It is an option that worked for another little boy with Doose Syndrome. You can read more about it HERE. It would take some major convincing for the doctors to even consider this option. We however know that God will provide the right medical team if this is the direction that we end up going. 

Please, please being praying for us. The everyday issues that we face are enough to leaving me crying by bed time. We need the strength of the Lord to make it through. He is able to provide abundantly more than we could ever ask. We also need direction. Lots of doctors have told us that Ethan is not going to make it through this. He is a tough case. Doose Syndrome is so rare, but Ethan is more rare. Nothing is working. We will not give up praying. We know the one who made him, and we know that only He has the answers to all of these questions. 

1 comment:

  1. For you created my inmost being; you knit me together in my mother’s womb...Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts oh God! How vast is the sum of them!

    We are praying for wisdom, healing, and direction.