Wednesday, May 08, 2013

Hewitt and Titus Update

Sorry for the delay on this. Things have been crazy around here. Even more so than usual, if you can imagine that.

Once again I am feeling thankful for God's hand on our search for a neurologist back in 2008-2009. He was a comfort to me in the hospital with Titus, assured me that what he was dealing with was common and really put my mind at ease. He is funny, caring and brilliant. I am so thankful for him! If you are in Seattle area and you need a pediatric neurologist, I HIGHLY (yeah, I shouted that) recommend Dr. Marcio Sotero.

Titus: The EEG showed that Titus is not having seizures. The neurologist explained to me that they're tics and the only reason we even did the EEG was because of Hewitt's history. I am so thankful to have seizures ruled out. It's a huge relief and has cleared a lot of space out of my brain not having to wonder and worry. He did tell me to watch for OCD and ADD, as those tend to be issues that typically arise in children with tics. He shared some great information with me about how common it is for boys to have tics and that for a lot of them it goes away on it's own and never needs medical intervention. I'm so thankful to be able to move forward on this.

Hewitt: Well, he continues to have some seizures. They are almost always absence seizures but I do notice them and this does concern me. I still thinking I am seeing an occasional myoclonic seizure in his hands as well. We have a 24-48 hour EEG scheduled for him in June. The dilemma we are facing now is that he is as high as he can go on the medicine he takes for absence seizures. He doesn't tolerate it at a higher dose. So, if he is having as many seizures as I think he is, we will need a new plan. Right now, we are talking about a diet change for him that would include higher fats, low carb, no sugar. This would be a hard change for him, but I think we could do it and we might just do it for everyone if we do. I don't know, we'll see. We might end up being in the hospital for 48 hours this time. We are hoping to catch these episodes he has at night, so they might keep us in 2 nights instead of one. We won't know until we are there though.

Hewitt came and visited Titus on the second day in the hospital and I caught this great pic of the two of them. I love it so much. We had just ordered Titus' lunch and Hewitt and Titus were exchanging stories about hospital food as I took this pic. It was pretty sweet!


1 comment:

hayden said...

they were so funny friends swapping war stories. they are very sweet boys...our boys. love you.