Future appointments shall be made with these specialists and needs:
- ERG with Casey Eye Institute to follow up on possible progression of Achromatopsia or even Cone-Rod cell dystrophy in addition to Achromat. There is signs that he's likely completely color blind with possibly just seeing colors very minor. It's no wonder he hasn't caught onto learning his colors like he has other things! This will be overseen by an eye geneticist and neuro ophthalmologist.
- Every 3 months we have a maintenance visit with Casey Eye to make sure no further damage is done with his potential Retina rips or coming unattached. Due to Sticklers Syndrome.
- Occupational and Physical Therapists due to preventing Juvenile arthritis with muscle stability which is highly common with Stickler Syndrome, as well as helping with his Sensory Processing Disorder management.
- Neuro Psychiatrist to determine if he does indeed have CDD or just Aspergers with some regression in general. As he's gone from being highly articulate to now more one words or stuttering that he's never done before.
- Continue to see the Psychiatrist to manage behavior, and a behavior specialist is likely needed as well in particulate once he attends school.
- Contact the school for the blind in order to manage and receive help for his Achromatopsia as he goes 'completely blind' in bright settings such as indoor or outdoor lighting. If he see's, it's in a high contrast of black and white.
- Eye Dr's to get the most accurate and correct tinting of his special glasses needed for Achromatopsia such as shades of amber to yellow to potentially just full on deep red. He'll need around 2-4 pairs, I've been told.
- Shriners, there is currently about 5 different specialists we also see there on a regular basis and will continue to keep seeing to manage symptoms, preventive measures, and such.
- Geneticist to hopefully get final test complete on what genetic mutation of Stickler Syndrome he has, Achromatopsia, Aklyosing Spondylitis, as well as a few other potential genetic mutations that might surface from 2nd cousins on Mikes side. I believe there is about 7 different genetic tests that are still pending via the insurance for months now.
- Retest him in Gluten intolerance, dreadfully again. The last one was false as the last week I had tapered off from his Gluten diet due to his inability to sleep at night. He became full of sensory, stemming, and had massive meltdowns that would leave him to falling asleep at times 2 am if not sleeping at all during the night but instead fussing and crying all night flopping around not being able to get comfortable. Not exactly the most exciting situation when you're attending college full time and need sleep in addition to juggling this! Melatonin on a regular daily basis has put him to sleep far better with out much of these hitches as well as returning to a Gluten, Dairy free, and Cassen free diet.
- Keep log of all that he eats. He will likely still see a Pediatric gastric/bowel specialist as well. He has never but rarely had solid BM since birth. He also complains about a painful stomach ache and eating gives him anxiety at times. Tracking his diet will help determine what exactly is making him set off with these anxieties, and potentially help lessen them from being aware. Yay, another thing to keep track of. Why not?
More to come in 2013, and it's very likely I've left a few things out. I've had to take a few weeks off during finals and stressful intense situations this month from many of these appointments which has set us back a little. However, I hope to return and get most of these once again out of the way that way I can focus on other projects and life better. After all, I have to still pay attention to my other 3 boys in the juggle of it all. It's not hard, but it's also not easy. I'm just ready to clear my schedule a bit more from all that still needs to be accomplished!
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