Wednesday, January 21, 2009


We spend many hours looking at the bear. The bear, the symbol for Children's National Medical Center. The bear is even in the ceiling tiles.

Today we visited the neurologist at Children's.

Brayden's neurological issues have been on the back burner lately because of his vomiting/GI issues. His seizures have changed and increased. We knew it was time for a visit with the neurologist.

Brayden and I headed into Children's today, the Children's satellite office in VA. My heart always races before the visits. Half because of the actual doctor visit and half because of the parking. The parking situation had brought me to tears before and that is not a good way to enter a visit to the neurologist. Thankfully we found a good handicap spot and headed in.

I am never quite sure about the outcome of the doctor visits. Brayden's is still some what of an enigma. Not one thing to describe Brayden and his medical conditions; things are constantly changing when he gives us more pieces to his puzzle.

As I said, Brayden's seizures have changed and increased. I came to the doctor armed and ready with pictures and video. We have learned to document everything so the doctors can see what we are seeing at home. This is a picture of one type of Brayden's seizures. We lovingly refer to these as the iron cross. His arms and legs go straight out, we could not bend them if we tried; he does a crunch, almost lifting himself up and seems to disappear until the seizure is done.

I talked with the doctor, expressed our recent concerns and even broke out the video camera to show his recent seizures. The doctor concluded that Brayden's current medications are not doing the trick. He is currently on Keppra and Trileptal. The plan is from us to bring Brayden off the Trileptal over a month and gradually introduce Topamax. As we are transitioning the medications, Brayden will be extremely drowsy (he always is with any change in his seizure meds and takes a few weeks to adjust). Then plan is for his seizures to be much more controlled. He will more than likely never be seizure free. We have to decide between how many seizures is tolerable and him being completely snowed by medications.

Sometime this spring Brayden will be scheduled for an MRI. His only other MRI for his brain was done at 3 months old. Having a MRI when he is two years old will provide a better picture of his brain since it has grown (only a little bit but we count every centimeter). It will probably not change any of his treatment or therapies but still be useful information in understanding Brayden.

More quality time with the bear...

1 comment:

Debbie said...

And a big bear hug to both of you right now..Praying you find the right mix of meds...