Tuesday, September 20, 2011

Still no diagnoses.

We met with Cameron's neurologist yesterday and his staff. We were there over 5 hours. Mostly waiting which is sooo much fun with two active toddlers-NOT. It wasn't too bad though.

We talked with Dr. Foster quite a bit and answered all the usual questions about his behavior and any new developments. Unfortunately it seems as though we are just as far away from a diagnoses as we were a year and a half ago. Cameron's case is just so unlike most brain diseases.

They did a whole other batch of genetic tests this morning at Memorial Hermann. They feel strongly that it is a genetic disease but didn't mention much about mitochondrial disease this time and in the past that has always been the front runner. They even mentioned Retr syndrome (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/) which in the beginning thought to only occur in girls but apparently it can be present in males as well.

We did read the reports from his last MRI and the only new information we saw was that he now also has diminished gray matter in the hippocampus region. This is what causes long term memory problems. That makes so much sense to me because it usually takes Cameron a very long time to learn new things but if you don't use that new skill for a week or two it is GONE and you have to start over.

We are relieved that Cameron has been mostly seizure free since his first episode.

Also, Cameron has started babbling. He will say hi over and over in his sweet little voice and now he is babbling 'buh buh buh.' We all love to see his big smiles as he entertains us with his sounds. He has been quiet so long so we love love love it!

We are driving home from our doctors visit in Houston right now. After two nights away from home we are ready to get there!

Thank you for all of your thoughts and prayers!

1 comment:

  1. Thinking of that sweet sweet boy...and of you andyour family! Stay strong...