Trains, trains, and more trains.
The UC Davis MIND Institute is an amazing place. Architecturally, it's a beautiful building of brick with the inside filled with glass and light beechwood. Artwork from patients with autism spectrum disorder line the walls, all professionally framed. Some pieces are so incredible, they look like master artists painted them and should be found in galleries. The waiting room for children is also very impressive. This place is primarily for children with neurological disorders, such as autism spectrum disorder and fragile X syndrome. However, John Michael's geneticist that he saw a year ago, also has an office here.
Doug and I with John Michael, along with Dr. M and two interns, crowded into the small room. Dr. M was immediately impressed by John Michael, having last seen him when he was four months old. At that time, we had many worries, concerns, and questions over what health issues may arise during his first year. As we all sat down, John Michael smiled, waved and reached to shake hands with her and the interns who were there to observe. He is very social and loves to interact with people. The purpose of the visit was to follow-up from a year ago and to see his development. It was also my one chance to ask an expert's opinion face-to-face about some treatments other parents are doing with their children, such as high doses of vitamins or taking them to the Institutes in Philadelphia, PA.
On high doses of vitamins, she said that there haven't been any conclusive tests to suggest that it is beneficial, but she has some parents that say they've noticed marked improvement with cognitive function and muscle tone. Other parents have said it hadn't had any effect. She said water-soluble vitamins were harmless in high doses, but to be careful for fat-soluble vits that could build up and cause liver damage. I asked her specifically about Nutrivene and she said a colleague of her said it's a balanced vitamin product and could be used.
As for the Institutes, she has heard of it and said it was highly regarded for children who are brain-injured. Down syndrome is a type of brain injury, according to Dr. Dolan of the Institutes and the children are given therapies based on that. Dr. M said that parents who've taken their children there are very happy with the intense therapies and use of oxygen for cell regeneration (I hope I said that correctly).
Even for parents who cannot or would not do the Nutrivene or Institiutes programs, Dr. M highly recommended daily multiple vitamins, such as Poly-vi-sol, for children with Ds. I can't recall specifically the medical reason, but something like their bodies don't absorb nutrients from food as easily. But don't quote me on that!
So, I will do my best to remember to give John Michael his vitamins... because it's good for his cells.
She noted that his height (50th percentile) and weight (75th percentile) are excellent and his head circumferance (3rd percentile) is typical for children with Down syndrome as their heads and brain size are smaller than the general population.
Finally, I asked Dr. M about Mosaic Down syndrome. It's been a question in my head for a long time.
She said that at first glance, she suspected Mosaicism due to his mild facial features. He could have a simple skin biopsy to find out. In the hospital, just after birth, they tested only about 20 cells. With skin cells, it takes about 2 months to grow and test about 100 cells to see if all or only some have the 3rd copy of the 21st chromosome. Of course, if he does have the Mosaic form, she did tell us that nothing technically changes in how we care for him as it is still Down syndrome. It just gives us more information about him. I'm not sure when that'll happen.
We don't need to follow-up with her since John Michael's needs will be taken care of by his pediatrician. But it sure was good to just have an expert take a look and say, "You're doing a great job... John Michael is doing fantastic." Sometimes we just need an extra pat to affirm all the hard work we do. And that was well worth the copay!