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AVM Survivors Network

If its not a bleed we are good!


#1

Jacob has finished one full week of school with no missed medical days...I am doing a happy dance:)We also did the NeuroPsych Eval and the results gave him his IEP and his loss is memory and marked deficit.But this is all good because now we can move forward and get the help and therapies needed to build life again.And I don't feel like I am just crazy in my observations of what is going on it has been proven that he has loss.He also has damage to his hypothalamus which was another thing I was concerned about.So things are starting to come forward and we are now in the process of becoming on the path of gaining recovery and gaining the ability to now move forward and take control of our lives instead of feeling like it is happening to us and we have no control now we can start navigating somewhere!


#2

I know so well how you feel lol. A week of no medical appointments are incredibly rare! My son had the same issues btw and it took a year for the docs to listen and get him into Brain Rehab which involved Neuro Psych testing as well showing the same difficulties as your Jacob is experiencing and also damage affecting his balance that Physio helped with.


#3

So Christine tell me more since this result only helped give him his 504 at school how else will this test help my son...since he is due to graduate high school...all the plans we made before seem to be gone.Since school is so hard for him now since his memory can be there although limited some days and completely shot the next...what do we do with his future.I don't know where to turn for services as in life skills for him. Any suggestions will help. Thanks


#4

Apologies for taking so long to get back to you Daphne. My father was diagnosed with cancer (we lost my Mum to it last October) and then my Little Jack's AVM ruptured.

I am surprised that the Neuropsych test did not also include strategies to assist your son with his difficulties. Little Jack's not only diagnosed the issues he was dealing with but had suggestions that he and the school could put into place to assist him to overcome/side step those difficulties. Maybe you do not have a full copy of the report or maybe the Neuropsychologist has not done a complete job to assist your son. I would pursue this further. I hope that helps.