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AVM Survivors Network

The closer we get


#1

Changed the Pic and look at him! This mom cried..He is dressed for Prom. While not driving yet because he is scared he has some great friends who picked him up and the boys then as a group went and picked up the girls and went and took pics with a photographer. To think a year and a half ago he was lying in the hospital bleeding for the second time! I am so Thankful!
On a more concerning note...
The first bleed @ 8 all anyone would tell me,meaning doctors and medical staff was he should be normal and get him through school. This second bleed at his junior year in HS, has left a mark in loss of memory greatly. He told me last week he loses his vision daily for at least 20 min. to an hour. WoW I didn't know that and he said that is why getting a license scares me. Well Dah after he said that I of course agreed I would be scared too! He still has a headache everyday all day and night. He sleeps about 3 hours every night and we have migraines at least one a month. Which he is out of it for 3 days and does nothing but sleep with medication aiding in that.We have tried Gabapentin and that made him dizzy and sleep for 22 hours a day and that was without up the dose as they said we should.I was afraid he would be in a coma forever. Now we are trying Amitriptyline @ 10mg. We tried for 2 days and he slept yet again for 20 hours everyday and did not help headache.So yes I put a call in to doctor to see what we should do and we stopped it. He can't miss school like this he is close to graduation. Another concern is the doctors have just dropped us. No one ever said we needed to see the Psych person to get results from eval. and no one from that office ever called.Next as we asked what are we to do to help Jacob for the rest of his life. In as what are we doing from this point. Everyone has pushed going to school and graduating was priority but what do we do after that. I don't know what direction to head with him. He needs help with cognitive skills for living.We feel lost. The Neurologist has basically said Jacob is fine and doing well as far as he is concerned and when we brought a load of questions and concerns he said I have no answers or it may or may not be. We both left his office frustrated and crying.Then angry!He has a 504 for school if he chooses to go on with schooling but since he has a hard time remembering this from one second to the next, which we never know what will stick and what won't. He is strong in Math but English and writing and memorization stuff is the worst.So I feel lost and have no answers for this.I was told AZ is the worst for cognitive rehab and resources. If we have to move to a state that has hope for him we will move.While we had the best Neurosurgeon who was the front leader on some of this stuff it does no good if the state has nothing to back it up after you save them.
Sorry for the rant but I am just stuck and no one is hearing me when I try to convey these concerns to them!What can I/We do to help with Jacob's future?
Thanks...
Happy note we are graduating!!