We are yet another family driven to bankruptcy from medical expenses.
My son, who is 14, developed Tourette’s syndrome when he was 10. It took over a year-and-a half to diagnose, because Kaiser insisted it was anxiety and a personality disorder. After months of huge co-pays for useless therapy, psychiatric visits and medications which simply made everything worse, we turned to outside therapy to help his anxiety. He underwent another six months of wonderful, weekly, expensive therapy, but it was ineffective on the spreading tics. Meanwhile, his school performance deteriorated, he couldn’t sleep, and he was labeled a behavior problem at school.
I couldn’t work for all this time, as I had to be at school helping my son, or I was up all night on the Internet trying to research something about his situation. My husband’s business tanked due to the economy, and we ended up living off of savings completely. Finally, we changed therapists who, yet again, diagnosed the organic tic disorder, “Tourette’s,” in a single visit.
As the medical definition of Tourette’s states there is no cure, they do not cover any therapy or testing to find out why he suddenly overnight developed an organic tic disorder. Nor do they cover any of the several therapies we have found that help the tics. So we pay out-of-pocket hundreds of dollars every month. Last year alone, we paid nearly $15,000 in non-reimbursed costs, plus monthly premiums which cover nothing!!
Last year, we finally took my son to a new pediatrician who charges $300/hr out-of-pocket, and did thousands more dollars’ worth of non-reimbursed tests to discover he doesn’t even have true Tourette’s, but a curable form of a tic disorder called Pediatric Autoimmune Neuro disorders associated with streptococcus infection (or “PANDAS”). We found out he had rheumatic fever at age 10 that was misdiagnosed as strep throat, and he never got rid of all that strep, and now it is causing brain inflammation and the tics.
I have gone through my entire inheritance and life savings, our marriage has completely disintegrated, and the treatment for PANDAS is thousands of dollars ($9,000 per treatment just for the medications, and he may need as many as three treatments). In addition, my son has severe celiac disease, also misdiagnosed by Kaiser, as they ran a single, outdated, probably cheap, test which said he did not have celiac. More wasted sickness on this poor kid.
A couple of years ago when I realized how this was going, I desperately looked for financial assistance in our county for our situation and his massive medical bills. I looked for an organization, or anything that could help us. Nothing, and no one, could help us. Now we are in bankruptcy, and our cupboards are bare. He still needs treatment, and I’m frankly terrified that I will not have enough money to cover rent, pay PG&E, buy food, and get my son to his cranial appointments and other physical therapies that help him. Our medical system sucks. I am a professional person – not a slouch, nor a failure. We are victims of our crappy healthcare system, and possibly worse things are on our horizon because of it.