My son TyeRiver Williamson (Tiger) was born with a genetic syndrome called Craniometaphyseal Dysplasia. Don't worry if you have never heard of it as there are said to be less than 100 documented cases in the WORLD who have this disease/genetic disorder.
It is a syndrome that effects the bones his the cranium and the long bones of his body. The skull grows thicker and faster than what is considered normal. Tiger has areas that are 2 times thicker and areas that are 3+ times thicker than what the normal human skull has. This causes many different things that one never really thinks about. He has moderate to severe conductive hearing loss. His sinuses are filled with bone as well as his ears. So, when you and I have a sinus headache from barometric pressure changes, Tiger is pretty much guaranteed a migraine headache. Sinus infections run rampant at times, as well as ear infections, though as he has gotten older, and had three different ear surgeries, the ear infections have become minimal.
It also effects the way that his teeth and jaw grows. He sees a pediatric orthopedic orthodontist for his mouth, as his gums are crazy thick, and he was toothless for like three years as his permanent teeth just were not coming in. His orthodontic work so far is all paid out of pocket, as the insurance company denies that it is a medical expense. Our first visit to this orthodontist was $700 for the special CT scan xray that they needed to do. I continue to pay 240.00 a month for five years for his braces. I can't remember the total, I joke that this is my new car. (haha) This will not include any surgeries that may be in his future for bone overgrowth.
The way it effects the long bones are with what they call clubbing at the end of the bones. Tiger, so far, had had minimal effect from this, but he is in the throws of puberty at age 14 and he sees several doctors for regular check ups.
However, this syndrome is different in every single case, which makes it hard for doc