Your child's illness is something you're never ready to emotionally handle. The tale of woe stated with my 16 year old son having very bad digestive problems and being misdiagnosed by all his doctors in New York. Most blamed it on nerves as he was applying for college--ever notice how often doctors claim stress causes their lack of success diagnosing?
Off he went to college--U of Michigan--with great SATS and great pain. Below the fold you'll hear about evil insurers and one saintly doctor.
Umich's student health was not much help for a year and a half. Finally, one of their doctors figured it out--and called me to explain why my son was being expeditiously sent to "the big man in the field." He also counseled that we should try not to have him leave campus--once kids leave, they rarely return.
The "big doc" is a saint. The dx was Crohn's and the immediate treatment was prednisone. At first Dr. Nostrant suggested he leave campus life and take a small dose, graduating it until it alleviated the symptoms. Remembering the other docs advice, I asked if maybe it would be wiser to start high and decrease until a maintenance level was found. Here's where Nostrant was so great, he asked why I suggested this--listened carefully, and agreed. Never heard of another doctor doing this.
The insurance angle occurs awhile later. Pred was causing bad side effects and a new drug was on the market--Remicade. The doctor called to set up an appointment, then called back saying it was denied by my health insurers--GHI/Blue Cross/Blue Shield. I called the center that was going to infuse the medication and offered to pay cash--$10,000. They refused because they wanted to force insurers to accept this medication. I repeat, I offered to drive from NY to Michigan with the cash, and they said no.
Fortunately, I was a building leader for the union, the UFT, and knew who to call. I begged him to put pressure on the insurers--he did--and my son got the medication. He needs to be infused every 2 months for the rest of his life--and he could only take a job that had good insurance. Fortunately IBM hired him and he's still there--9 years. The worrying aspect is that he might reach a limit on how much they'll pay out--and then he's screwed.
Here is an American success story that could have been a failure because of our health care system--and might still be. If he moves to Canada or Europe, the problem would disappear. Why are they so generous and the U.S. so cheap? Ponder that while you light up today's firecrackers.