New, Nervous and overwhelmed
 

Hi,

I joined today, 19/01/2014
My son has spina bifida this was diagnosed in 2010 after being undiagnosed and mis diagnosed for years. He is now 15 years old.

He currently has a tethered cord, 2 x syrinx in cord, no bowel control, limited bladder control, tightened ham strings and achillies tendons.

He is going to have an ACE procedure done, this is booked for 4th feb but i am guessing will be postponed as he ishaving an mri scan this week to decide how bad his cord is tethered, so far all surgeries have been stopped until after this mri scan, this includes a biopsy for hirschprungs disease.

We have no idea what to expect or is coming next but I am sure we are about to find out. I am sure i will have a lot of questions as things arrive.

We only got the diagnosis because I got my sons medical notes after years of being ignored that something was wrong to find out some idiotic dr had labelled me as having munchausens syndrome by proxy behind my back as he claimed i wasnt giving my son the huge doses of laxatives prescribed to him to make him "better" apart from horrifying reading, it transpires as his cord is tethered and the nerves to his bowel are non-existent he wasn't ever going to "get better" with laxatives...

I am now hoping to fight to have this draconian labelling removed or at least made harder to do by a paediatrician without the input of a psychiatrist and that everything for the child has been done so no other parent and child find themselves in our position...

Greetings!!