Follow-up doctor appt for Jacob

Jacob had a follow-up doctor appointment with his local Neurologist yesterday. We went armed with a list of questions and we we did get a few answers. Some a little shocking than others, but none the less - answers.

The doctor disagreed with the Mayo Clinic MRI results. He feels his white brain matter has NOT progressed and his brain has NOT shrunk. Ah, what? He said the shading was different, but that had more to do with technique of the MRI and the fact that Jacob is growing. He is 80% sure that this type of white brain matter abnormality is static - meaning it is not a progressive type and may stay the same his entire life. I want to believe this, however this is the same doctor that said he was 99% sure Jacob had "genetic Epilepsy" until he saw his first MRI. So, the 80% doesn't hold much weight with me.

He also said that Jacob had already been tested for Metachromatic Luekodystrophy, Krabbe's Disease and Fragile X and those came back negative over a year ago. Ah, what? Where were those tests results?!? So what that means is the 3 weeks of torture we went through wondering if our son had a terminal illness was for nothing?? He already had those tests done and they were negative? Gee, that would have been nice to know! Sorry, but I was pissed.

Medication - Doctor does not want to reduce Jacob's anti-seizure medication. He feels it is working properly (no seizures!) and doesn't want to mess with that. In all reality, he is weaning Jacob off the meds but not increasing his dose as Jacob gets older and bigger. We will continue meds until July 2011 and then consider taking him off completely if he has been seizure free. The doctor is also considering putting Jacob on some type of ADD medication, but we're going to talk about that in another 6 months.

At this point, we are not going to do any additional testing on Jacob. His doctor wants to repeat the MRI in July 2011 and then decide based on those results what the next steps will be. Since he feels there has been no change in Jacob, he doesn't want to put him through any unnecessary tests. He wants him to grow and see what his brain does.

As far as school goes, Jacob has been in Kindergarten for almost 2 months now and he will more than likely be pulled out of regular Kinder and put into what they call Special Day Class (special ed basically) or he may qualify for a full-time aide and stay in the regular Kinder class. Jacob is just not anywhere near the level of the other kids and is unable to keep up in the class. The school is doing some additional testing on him this month and we have a meeting on the 27th to determine a better placement for him.