Neurology Appointment

Broc and I saw Dr Smith today.She is really lovely and friendly.She has a very good manner which means a lot to me.I really dont care for a Dr that thinks they have been to x amount of med school so they know everything.I like one that treats me like a human being and a mom.

Anyway, the residents reviewed his whole history and then did a physical on him too.They said his physical was great but that he needs to be active in sports and things that involve co-ordination.Well that didn't go over to well as he is not allowed to be in sports and things like that because of his heart so we have to practice riding his bicycle which he loves and hates because he cannot get his pedal to come back around and it frustrates him so much.We were going to work on that this Summer but it will have to wait as he will have to recover from his vascular surgery first.

They did have a CT Scan that was done when he was 7 months old and they were able to compare it to the MRI he had done last month and they said that the findings were the same.Apparently he had the bigger ventricles in his brain which means in proportion he had the same amount of white matter loss then as he does now.Which is comforting to know that it has not gotten any worse. They think that before he was 7 months old his brain had some oxygen and or blood loss and that is what caused this to happen. I did have some issues when I was pregnant with him and we almost lost him during his first cardiac cath, so we are not sure when it happend but it did.

Because of this lack of white matter growth it has caused his developemental delays especially with gross motor skills.He can do all these skills but it will just take time for him to master these as it did me.I had some extra OT and PT when I was younger and we are going to try and get him into the school system for that.We have tried for the last 2 years but our insurance has denied the coverage for it.We are also going to try and get it covered again seen as this time it comes from a Neurologist and not an OT specialist.We are going to keep fighting for him until he has all the help he needs.

They are also thinking possibly on the lines of Mitochondrial / Metabolic Disorder so they are going to order some specific labs when he has his next fever episode.They are thinking that his ballance issues when he is ill could be caused by a metabolic issue happening to him.

If only it would be that easy as taking a few enzymes that his body is missing or not making.

We will be seeing a Ped. GI hopefully soon as Broc is having pain and fullness after eating only 2-3 bites of food.It happens with liquids too sometimes.We thought it was heart related but its not. He used to be such a big eater and love his food but that is not the case anymore.

Thank you again for alll your prayers and kind words that you leave in your comments.