AVM arteriovenous malformation

[hch]

Hi there , my baby boy was diagnosed with AVM on the 28th july after nearly dying from a bloodclot on the brain which the AVM caused. This is a very rare condition so im thinking that noone else on here will have a child with it.

 

[fairywings]

Sorry your son has it. I know how it feels to have an illness be really rare (my son was the 6th in the uk and 56th worldwide since its discovery with his illness.) I have read a little about it because I did not want to reply and not know anything about it. But what I found was about adults and elderly. . .

How is your boy doing now? What have they said?

 

[hch]

Hugs to you hun xxx
My baby still has a small blood clot on.his brain caused by AVM, he had an emergency craniotmy to remove the clot which saved his life but now we have to wait 5 weeks for an mri scan to see how big the AVM is and to decide how they will treat it. In the mean time we have to pray it doesn't leak again xx

 

[fairywings]

Oh no that is awful. I would hate to have to wait 5 weeks for an MRI. I hope that it shows improvement, and can be treated easily. My son has had several MRI's, mostly as an impatient so we never had to wait that long. I really hope it doesn't leak again!

Poor baby.

 

[chezziepie]

hi

My brother has AVM and hes now 30 they haven't been able to operate on his due to wear it is in his brain and hes had a few seizures but has a normal job etc and you wouldn't think he was any different to anyone else. He takes epilepsy medication which keeps everything fine. Just wanted to give you something positive