7 yo son with autism and nonverbal

Two docs just found an AVM (2cmx1.45cm) in my 7 year old son’s right frontal lobe. Joey has autism and is nonverbal. He’s been having gelastic seizures since he was an infant and the neuro ordered the mri expecting a different finding. Does anyone know if AVM causes such seizures? Also, does anyone have experience with children who need to be sedated for even the simplest of tests much less the tests that are yet to come? My son will freak out with a blood pressure cuff or even a stethoscope. Thanks for any input!

Sounds like you have your hands full. I have not heard of gelastic seizures but AVM’s do cause a variety of different kinds of seizures so it is entirely possible.
I hope Joey is able to handle all the tests, etc. Maybe if they know ahead of time then they can combine alot of things at once while he is sedated.

Joeysmom,
Hi my name is Donna and I am a special education teacher. I was wondering if you had tried getting your son a doctors kit and letting him play with that as a way to introduce him to what goes on at a doctors office? I know that doctors and hospitals can be scary for children. I am sorry to hear about the doctors findings, but I will keep you and your son in my prayers. I know that my husband had a seizure after his AVM ruptured, but I am not sure if the seizure was casued by the AVM or not. Keep the lines of communication open with the doctors and I am sure they will work with you and your son to make things less stressful for both of you. Once again you and your family are in my prayers.

Does your son have short term memory loss because of the AVM or did he get surgery? Or are you at the beginning stages too? Wow, I don’t know how we would deal with short term memory loss – Joey has an extremely limited vocabulary now and to lose that and possibly more is extremely frightening!

Barb vareka said:

Hi Joeysmom,
My 11 year old has high functioning autism. He has been diagnosed PDD and/or Asberger. Because of seizures he has blood drawn every 3 to 4 months to check depakote levels. I always dread the day we have to. It takes up to 1 1/2 hours to get the blood. I totally understand your worries because we have the same ones. He is going to be sedated for the angio and we will spend the night. Otherwise I am not sure what he will do with the whole ordeal. What is yet to come??? Well once he knows the pain associated with going to see these doctors, I am not sure how we will get him back there. We are getting a hotel w/pool the night before, just so he is not so freaked out and we will be 5 minutes from the hospital. I do not know what gelastic seizures are but our son has had so many kinds, ending with a grand mall before put on depakote. (no siezures since) Doctors do not think his seizures are associated with this AVM because of its location. His short term memory is getting worse though, so who knows what is associated with what!! Sorry for your son’s AVM and all you do because of the autism! Barb

Thank you so much for your prayers. You’ll be in ours as well =) Thanks for the doctor’s kit idea!

Donna Kesselring said:

Joeysmom,
Hi my name is Donna and I am a special education teacher. I was wondering if you had tried getting your son a doctors kit and letting him play with that as a way to introduce him to what goes on at a doctors office? I know that doctors and hospitals can be scary for children. I am sorry to hear about the doctors findings, but I will keep you and your son in my prayers. I know that my husband had a seizure after his AVM ruptured, but I am not sure if the seizure was casued by the AVM or not. Keep the lines of communication open with the doctors and I am sure they will work with you and your son to make things less stressful for both of you. Once again you and your family are in my prayers.

Thank you so much for your prayers. You’ll be in ours as well =) Thanks for the doctor’s kit idea! Tanya

I hope they are able to combine tests so as not to sedate him so often. We’ll be seeing a new neurosurgeon at Albany Medical Center who specializes in AVM. Hopefully, he’ll be attentive to Joey’s special needs. Tanya