My friend had a child who developed CP from a genetic disorder. She had food allergies galore and the only thing she could keep down was a prescription formula called Tolerex (to the tune of $800/mo) The insurance company fought her tooth and nail... and in the meantime she had to cash in all her savings and retirement to keep the kid alive.
The insurance determined: 1)the prescription was a food formula 2)the prognosis of 2-3 years wasn't worth it.
She finally got it resolved 18mo later...but was never reimbursed the money she spent out of pocket. The child lived to 9 years of age. If the insurance company had their way.... she'd have stayed at the 2-3yr prognosis.
Ugh...home sick today....should not post to boards... :)