Autism + arachnoid cyst + neurological problems

[3096yew]

My son has autism is 17 and has had some strange problems lately in the last 8 months. He got up and fell back down on the couch the other day. He looked dizzy. He is having inconsolable crying about once a week and saying "eyes, eyes" and wanting an icepack for them. This lasts about 30 minutes an episode. He also started wetting the bed and having urinary accidents occasionally after about 13 years with complete toilet training. He also has shaking episodes of which I caught one on video. After 2 EEG's (one sleeping/waking) nothing abnormal showed up. He also sometimes jumps up and completely shakes like he is recieving a "jolt" from somewhere. The neurologists at our local hospital thought it could be a movement disorder. After an ultrasound to determine there was nothing wrong with his bladder, kidneys etc. and a bunch of blood tests and even a stool sample analysis the doctors were stumped. (His eye tests every year are normal). Then they did an MRI of the spine and brain. They found everything looked in order except an arachnoid cyst in the frontal lobe about 2.5 cm in diameter. Could the cyst be causing him these problems? The neuropsyche doctor said after spending 5 hours with us that he thinks it's a neurological problem, yet the neurologists have closed the book on his file.  He had a very normal birth and the only abnormal thing that happened to him was that he had a bulge in his fontenelle when he was 2 that went away on it's own. Is the cyst causing extra cranial pressure? Is it pressing on his brain and causing him to have a "jolt" sensation? Is there any such thing? I am desperate for help!! I love my son and can't stand to see him struggle with this problem. Should his cyst be drained? Can you think of any more tests that shoudl be done? Would a petscan help him in any way?
Any help would be appreciated!!
T. McHugh  

[mdyer]

My son is 7yrs old and was diagnosed w/ autism at the age of 2. Around the same time he started having these "episodes" that I was convinced were seizures. But because I could not catch it on video the doctors would not believe me, told me it was probably a tantrum and treated me like an overreactive neurotic mom. But when they did an MRI of his brain they found an arachnoid cyst in the front left lobal area of brain. The exact location that effects speech, behavior, social development all of his biggest deficits.And in case you didnt know, they have new medical evidence showing that arachnoid cyst cause seizures. So fast forward to now, we moved to a new state, got a new neurologist, voiced my concerns again. He ordered a sleep deprived EEG, he said it was the only way to accuratly do one to catch a seizure. I saw him this morning for the results and my son has been diagnosed with epilepsy. He was having seizures as frequently as 10 seconds apart from each other in a 55 minute time period. Yet from the outside he may just be blanking out, wandering away, loosing attention for a moment, because of his autism diagnosis it is easy to confuse the two. So I would highly recommend going with your intuition as a mother and dont let them talk down to you with their medical jargon. Do the research you can online to match the symtoms your son is having and request a sleep deprived eeg w/ no medication as many times as you have to till you feel comfortable with the results. I mean obviously something is not right and Im so tired of doctors treating us mothers like because we dont have a medical degree we couldnt possibly know more than them regarding our children. We KNOW when somethings not right. Keep at it, dont give up. I wish I hadnt let them discourage me 5 yrs ago, or I might have gotten this diagnosis a long time ago and gotten him the help he needed when he has been suffering all this time.

[wesnicallen]

Hi...I'm in the boat with you. My 7 yr old is on the autism spectrum and recently an arachnoid cyst was found (frontal lobe). So far, I've been told that it is common and not to worry. I have an appt w/ a new doctor, due to his tics/movement disorder and am hoping that this specialist will be able to provide more information on arachnoid cysts for me. The previous doctor was our seizure specialist. There is Dr. Oakes, at UAB in Birmingham, AL and he operates on them....so it's comforting to know he's there. He also sees patients on Tues/Weds.