It has been a while since I last updated the blog. Jonathan started a two-week sports camp and finished it and he did very well. I am very proud of him. He lost quite a few items in the process, but he loved it and learned so much. My heart filled of joy this past weekend when he asked me to play something and it was "rock, paper and scissors". He learned how to play that in the camp. He learned lots of games. Every morning, when I dropped him off, the kids were playing ball and a couple would call Jonathan up to come join them. That was music to my ears.
His receptive language has really improved tremendously. I know I keep saying that, but it seems better every week. This week he is attending a different camp. He got used to it very quickly. When I took him yesterday, the girl asked her a few questions about his classroom. He answered everything. Then she asked him for his last name and he told her without hesitation. I asked her how he was doing and she said that he was going great.
The most important thing to note in today's blog is that I got the results from the mitochondrial exam that was done a month ago and all the results were normal. One thing the Dr. noted is that Jonathan fits all the criteria for EDS (Ehlers-Danlos Syndrome) and in the report she encourages to keep him away from contact sports and to have his heart checked for a potential issue with the great vessels. I took him on Monday to a pediatric cardiologist who checked him with an EKG and an ultrasound. Everything was normal. The cardiologist suggested that we check again when he is a teenager, but for now he is totally normal. No signs of any type of heart abnormality.
The genetic Dr. concurred that Jonathan's history of low muscle tone could be an indicative of mitochondrial disorder, but since it cannot be accurately tested (not even with the muscle biopsy) and he seems pretty energetic now, she suggested that he keep him on the mito cocktail he is on and add creatinine. I haven't done that yet. She wanted to wait for the genetic test results to come back before going to different levels. She suggested that if I really wanted to test the mitochondrial theory, I could get an MRI done. But again, the treatment is the same mito cocktail I am already giving him. So I decided to wait for the genetic test results to arrive and if normal, I will just continue with my current plan. The results arrived today. "No evidence of an inborn error of metabolish was found". With that, I close this chapter and continue with other therapies.
Overall, Jonathan has improved in the past 3 weeks. Particularly his language has improved. He is very excited about summer camp. Has no anxiety. And when he comes homes, he does fairly well telling us about what he did. It is still all over the place, but he tries. When we ask him the names of friends, he tells us that he doesn't remember.
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