Living with an Undiagnosed Condition

My son at 5 years old started walking on his toes. The surgeon did heal cord surgery. He has gone from braces, walking cane, to wheel chair pushing with hands, to a battery wheel chair and now he can not use his hand to push the knob so now I am useing the knob to take him anywhere. He has feeding tube, cather and bag. Bacterial infections every month. Mildley mental retarted, and now 37 years old, and can’t do anything for his self. I have a horrer lift to get lim up and down. I even get up during the night to turn him over and pull him up in the bed.

Now they tell me it is not ceberal palsy, it is progressive but they don’t know what it is. They said expensive blood test could be done but it could cost thousands of dollars and the insurance might not pay. He is on medicare and medicade. I have not done anything because his neurologist made test and said his brain was getting smaller and he might get like a person with demintia. right now he can’t talk just say MOM.

It has been a slow process but iI was told to me that he would age faster than I will and I am 67 years old, and he lives with me. I love him so much, he has never tried to complain about nothing. If you know what he has please let me know. All thru his life he has had real good doctors. He also has a Balfin pump in his stomack also because of the spasms in his legs and he also has spasms of the bladder.He has doctors in Columbia, SC. Seen doctors in Charleston, SC., Agusta GA.,Riverdale Ga. , Warm Springs, Ga. He graduated from high school with a certificate, but he stayed there. I don’t know what else to do to help him. Do you?