looking for options/answers for my son
I am new to this, I am researching to find out info and answers for my 12yr old son, We found out he has caudal regression, and tethered spine at the age of one.
We have been to the doctor many many times, not really getting any answers or meds to help. We then were referred to a children's hospital that has neurologists. More and more tests were done along with meds, still nothing. i have been trying to find out as much as I can to help my son. A few weeks ago my son developed stones in his bladder, we went to the children's hospital, I asked the doc questions and he could not answer them.
Alarming to me, my mind started going, he asked if I have spoke to a neurosurgeon and I said no, asking him why I was never referred. He said nothing. finding out my child had these stones in his bladder for over a year I was irate, The doc looked back on previous ultra sounds and saw them, How could they have missed them? Steaming more the doctor was pushing for a surgery that had more cons than pros.... so I need help, any advice, info, doctors, medications that work please let me know.
My son has a abnormal bladder, a normal 12yr old can hold 75cc of urine, he can't, he also has troubles with constipation, his hips are small and has a very small buttocks. If anyone thinks this may be different or mis dignoised please tell I will be all ears.
Thank you so much