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 doctors to know what needs to be done and when, and it is basically a guessing game as to what is "normal".
Since Tiger was born, he has blazed a new path. He was born blue, limp and lifeless on one side of his body and seized up and stiff on the other side of his body. The last thing I remember was a nurse asking for help as she didn't know what to do with him, and then they put me out. Doctors argued with me from birth that anything was wrong.
At 8 days old he was hospitalized for facial paralysis due to seventh nerve damage in his skull. They said he was a normal baby boy, in which, yes, he was healthy, but something was not right. Aside from facial paralysis, he couldn't sleep. He never napped as an infant, and he was a breast fed baby that wouldn't have a bowel movement for up to ten days. My diagnosis of his issues was that he had pinched or impinged nerves in skull and neck causing his face to not move and possibly causing many other symptoms that my two babies before him did not experience at all. I took him to a soft touch chiropractor at a month old and it was then that Tiger had some relief in his skull, as the next day one side of his face started moving again. There is a lot more to the story here, but I am attempting to give a background.
Fast forward to middle school. Tiger started braces, he was growing super fast in height like many kids do, and then the fall of his seventh grade year he had some nerve problems in his jaw and a really bad head ache that wouldn't go away. He missed three weeks of school right before Christmas break, and our adventure of more doctors offices, hospitals, specialists and urgent care doctors began.
By February that winter, he had been to the ER six times with head aches, and hospitalized once. We met his insurance deductible by middle of February. All in all, he was hospitalized twice in 2017, and had ten trips to the ER and numerous visits to urgent care, ENTs, neurologists, neuro surgeons. chiropractors, and more. He started medications for migraine prophylaxis as well as rescue meds that do not work for him consistently.
He had a break from the pain last summer, and then things started up again in January of 2018. More doctors, ERs and urgent care visits.
We did find a procedure called the sphenoganglion block (sphenocath), that is helping to get rid of the head pain from migraines, it started off being quite expensive and was $391.00 out of pocket to meet deductible the first three treatments, and now we pay $129 per treatment, which is much better, but when Tiger has the treatment three times in a week, it is getting to near impossible for my husband and I to keep up with bills and medical costs.
We are still paying our share of the hospital bills from his two visits last year.
I had not ever thought about asking for help. We have been blessed with friends and neighbors who have helped in many ways. But the fact of the matter is, at this point, When running him to different doctors, I am not getting my work finished in a timely manner, and his dad works 6-7 days a week 80+ hours a week at times, and we are still dropping behind.
I figure if I could just get the credit cards I have used for medical expenses paid up, and our house payment caught back up, we will be in a better position. Tiger will see a headache specialist this June that we are hopeful that can give him a better prophylactic treatment so that when the migraines start up maybe he will have fewer of them or they wont be as debilitating.
Any bit of help would be amazing. It would help with co pays, deductibles, medications. One med that they have prescribed for rescue medication was a $2000.00 COPAY. He had it filled last year after he met his deductible, but this year when I learned how much it was, I just couldn't afford it.
Its one of those things, we hate to ask for help, but sometimes, I guess the financial burden gets really overwhelming. Our hope is to have the migraine headaches calm down once he is through puberty and maybe the hospital and doctor bills will go down.
Wow, I have written this much and I haven't even gotten to brag about how wonderful of a kid Tiger is. Many who will see this, know his character already. He is a straight A student who tries his best with everything he touches. He is going into high school next year and will be a percussionist with Keller Central HS Band.
He has decided he wants to be a neurologist to help children with different neurological disorders. He's got big plans. ;)
Thank you for reading all of this, I will keep you all updated on his progress. And if we learn anything new.
Again, any little bit would help us get some things straightened out and paid for. Thank you, Adrienne Williamson
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