We had our first visit to the Thoughtful House last Friday. It was really a good visit and we are definitely impressed. Dr. Jepson was able to talk extensivly about the biological aspects of children with Autism. Based on the results of stool and urine samples from Andrew, he has low Zinc and B12 levels. He does not have a high yeast or bacteria count but these kiddos bodies are unable to get rid of yeast and bacteria the way our bodies do so that could be problematic for him. They also have problems with their enzymes. A lot of the stuff that was said is way over my heads and I am thankful that Felt was able to understand some of it. The result is that we have increased his supplements, and he now gets a calcium supplement. We will be looking for a protein powder to supplement since he is having difficulty eating meats except bacon. He will be on a antibiotic followed by a round of antifungals (diflucan) to kill of yeast. Oh- and he will have a one day chelation trial (very scary) followed by a 6 hour urine sample (what fun!) to be shipped to a lab in France for testing. Can you believe that? That's the craziest part of it. I am just pleased that we have finally found someone who knows more than us on Autism. That afternoon Andrew received his Autism diagnosis from the CARD (center for Autism and Related Disorders) program. Not sure if this was worth all the money but they did spend aproximately an hour and a half with us.
Now we have to think about where we go with all of this. Andrew needs more therapy and they recommended 20 hours a week. It's very costly and Felt has talked about pushing our ECI for more free hours which will mean confrontations and arguments......something I don't look forward to. Pray for us that somehow we will be able to get him what he needs. I know God will provide and things will work out. I am confident of this. Look how great day care turned out for us and I was really doubtful.
Yesterday I took Andrew to the ENT (ear nose and throat) doctor and they want to do a tonsillectomy and removal of his adenoids. Hopefully this will help him sleep better, stop the snorning and even help his ears and development. It does require a hospital stay so I will have to schedule that today.
Results of his MRI last week look good but with Dr. Jepson's encouragement we are thinking of having the 24 hour EEG just to make sure that there is no seizure activity. That ought to be loads of fun considering the first two were so difficult and they were only a hour and a half long.
In all of this we are trying to keep things normal and look forward to the Thanksgiving break where we plan to go to Carlsbad, NM to visit grandparents. This will only happen if Felt can fix my car- it is really messed up.
Rett Syndrome. One year Post Surgery
7 months ago