New Medication

Well, we saw Dr. Sarnat today, Taylor's Neurologist. He had the results of the EEG and said that it did show an improvement, as it did not show the hypsarrythmia which is the pattern characteristic of the infantile spasms. We were always told that little ones do outgrow infantile spasms and most often develop other forms of epilepsy, and it appears that it is already happening. While he said the EEG shows improvement on the one note, he still said for us to know that it is still very abnormal with alot of seizure activity. The seizures are now myoclonic and partial. Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. Most of Taylor's movements are still very jerky so we're not really sure how to identify what might be a seizure. Partial seizures are more difficult to understand, so I don't have anything to write about that yet!

Since the seizure types are changing and the hypsarrythmia is no longer present, Dr. Sarnat is going to start a new medication called Topomax (Topiramate). It will gradually be ramped up over the next few weeks and then the Sabril will start to be weaned off. This is good news to us because the Sabril can have quite significant side effects on vision.

We have our surgery date now for the muscle biopsy, coming up on September 22nd. Dr. Sarnat will see us again a few weeks after that and he will have the results by then. He's also going to send Taylor for another cranial MRI. They will be able to see more on the MRI now that she is older, so I'm quite anxious for that. It will be a few months before that happens though, hopefully before Christmas.

Taylor's been grasping certain objects with her left hand for a little while now, but last week for the first time she held onto something with her right hand. Go Taylor!

Left hand hold

First hold with her right hand

No hands!