my son aged 13 has a spinal AVM

[Steve]

on sunday last week my son had some discomfort in his right leg, by monday afternoon it was a bit worse. on tuesday he collapsed at school with severe pain in his leg, the A n E department, who x-rayed his leg, said it was probably just a virus and togo back in a week if it worsened. on wednesday night he was in severe pain and it had spread to his back, he was also having spasms in his leg. he was taken to the dr who referred him back to A n E, where they did blood tests and an MRI scan. It showed a spinal AVM at T12. They think it has had a bleed which would cause the pain. he is still in a lot of pain in his back and his right leg from the knee down has no feeling. He is in a childrens hospital now and they have talked of gluing, embolising,rehab and operations. Tomorrow morning he is having an angiogram then the dr is speakin to two other drs in london n paris to see what is the best course of action. we have been told how risky it is and his dad is with him as only one parent can stay overnight and i have to look after my other 3 children. I am worried sick and cant stop crying cause they have spoken about paralysation, wheelchairs, 2 yrs for recovery, months in hospital etc and i just feel so helpless. he is being really brave, braver than me, but i know he is really worried. he is on morphine and various other tablets including steroids to reduce the swelling. I am terrified for my son and my other kids. If anyone has any advice at all or anything that may help us please let me know
thank you
x

<u>Update:</u> <b>short update on my son 14</b> - May 16, 2009 - 15:07 EDT
Just a short update to let you know how my son is doing as i posted about him in january this year. He is now back at school. He still uses his wheelchair mostly although he can walk with crutches and also without them for small distances. He is still using convenes with a catheter bag. He has hyper sensitivity in his feet. He had his glued and we were told it was successful as far as they could see. he spent almost 4 mths in hospital.

i am trying to set up a support group and also to set up some fundraising to raise awareness of the condition as i have only ever spoken to two ladies(in america). one who suffered the same and one whose son suffered the same. I have already set up a group on facebook to raise awareness and i have had a good response, several messages offering help with fundraising.

please feel free to contact me whether it is to just have a chat or to ask questions as i will do my best to help where i can. or also if you would like to help with fundraising or raising awareness.

thank you
rachel x
<u>END Update</u>