A Year After AVM bleed/surgery

It's almost a year into my 8 year old's recovery.

He still doesn't walk, talk (some words but it's real labored), and needs help with everyday things. After his 3 month stay at rehab this summer, I started to prepare myself that he might not be able to in the future. I won't give up though.. I still do his therapy at home, and I know a year is still a short time.

It's his personality and mentality that has completely changed and what we have really struggled with. He's never happy, he gets delusional and has hallucinations. He has no drive to get better. He hates everybody and physical fights with us. He's constantly biting himself.. there has been a couple of occasions where he's almost bit off his fingers. He tries to throw himself out of bed.. the list goes on. He screams when we try to prevent him from hurting himself (loudly I might add even though he has a hardtime talking).

His only way of communication is a sheet of letters. Thankfully he's a great speller so he spells out everything. Can't write because he developed tremors. But I'm the one who really talks with him, because he spells fast and I can usually predict what he will say. He does have his fun with his brother playing games and laughing.. but it lasts for a hour or so. He either starts biting or just gets mad at anything. Or he just falls right out. In seconds - snoring and all.

We've tried so many meds.. the neurologists told me to take him to a Psychiatrist because he's all out of ideas. We saw one at rehab, but they gave us no help. But I'm looking for another.

I read a lot of AVM stories.. I can't find anyone who has had a similar problem as what we're going through. Nothing online, I've googled a million things trying to find some insight or help.

Praying for your son…

Hi there...my son had his AVM bleed @ 8 and I know I was fortunate enough but for the first year my son Jacob had rage and personality issues. He became emotionally detached from everyone and everything.He had with me some real anger bursts that I didn't understand.I kept pushing thru with many prayers and thoughts eventually what some looked at as not normal became our normal. My heart goes out to you because it is tough.Jacob gradually and myself seemed to put a life together and while he seemed to recover and have it pretty good but he always remained detached. No more hugs, kind words,gratitude,or even wants to be around me.Now ten years later he had a reoccurance and bled again this time we have significant cognitive loss and he has depression, can't sleep more than four hours at a time.He hates the effects the medicines have so he won't mention any issues.He is even more detached than before and acts as if he is mad at me for something. He hates everyone and is easily annoyed by sounds, people, and repetition. At times he is impossible to please. I know my situation is no where near yours and my hat is off to you.Just know you will be in my thoughts and prayers and your not alone. I understand. Hugs to you all.

Thanks. My hat off to you as well. I guess I just have to wait and see how everything will be like down the road. We developed our own type of normal as well.