I'm a little downhearted as I post this post. Today, we had a follow-up with our epileptologist at CHOA. She came in and hugged me and then set down and pulled up Blaze's last scans. She did not have good news for me. She said during this last round of testing that they found more wrong than they originally thought and she seriously doubts that Emory is going to approve Blaze for the surgery. She said that she is still going to present Blaze's case to the team but because of these last findings she is doubtful. She pulled up the scans and showed me the problems. I could read some of the notes that the doctor (who read those scans) sent to our doctor and it wasn't good. Blaze has a new diagnosis of Malformation of the Cortical Development of the Brain and Polymicrogyria (which I had been told that a few weeks ago). This would be something that he was born with and most likely caused by the terrible virus CMV that he was born with. She said, when his brain was still just cells and migrating to form a brain, his cells did not land where they should, so therefore his brain developed abnormally. This is what has caused him to have epilepsy and they think the epilepsy is what caused the hippocampal sclerosis and the lesion that he has. It was a domino effect.
Back in March she gave his dx as mesial temporal lobe epilepsy with hippocampal sclerosis. At that time, she thought that the temporal lobe was our only seizure zone. However, this last round of testing, they found that the seizure activity and damage is much broader than they first thought and he has seizures coming from other areas of the brain as well. She said that they would not be able to remove all of these areas and she seriously doubts just removing the temporal area is going to make much difference. She changed his epilepsy DX to Intractable Focal Epilepsy with hippocampal sclerosis. Hippocampal sclerosis is not commonly found in young children. It is more common in elderly dementia and Alzheimer patients. It's a scary diagnosis and I have no idea what to expect. Dr. Holt from CHOA told me that they seldom ever see children come through CHOA with this condition. I don't know what Blaze's future is going to hold and that's so hard. The epileptologist said that she will be in touch and she will call me with an update after they have their meeting.
My heart is broken for Blaze.. This was our hope for him to one day be free of seizures
To learn more about hippocampal sclerosis
To learn more about polymicrogyria (PMG)
To learn more about Malformation of the
cortical development of the brain
To learn more about epilepsy
All of the above is suspected to have been caused
by Cytomegalovirus (CMV)
To learn more about this horrible virus
