Autism, epilepsy and arachnoid cyst

Mary - posted on 09/08/2011

Mia, you sound like a really strong person. My thoughts go out to you.

Mia - posted on 08/23/2011

Hi Monica! I actually know Jennifer Jesperson! My son has an arachnoid cyst and newly diagnosed epilepsy. He's too young for us to know if he will be autistic. They seem not to think so, but you never know! He just turned one last month. This is not a fun situation to be in...we're here if you want to talk!!! Hang in there :)

Mary - posted on 07/02/2011

Hi Monica, I have a 9 year old with autism and 2 arachnoid cysts. He has sever epilepsy and has seizures every three days. He has been evaluated by neurosurgery for the arachnoid cysts and it was determined that the cysts are not effecting his diagnosis and not the cause of his severe autism or his severe epilepsy. We struggle daily, as I am sure do you with our son's disorder and take it one day at a time. He is currently on three medications for epilepsy and we are now resorting to the Ketogenic diet. If that fails neurosurgery suggested the removal of the left temporal lobe of his brain. Just hang in there with your son and do not be afraid to look to other doctors.

Angela - posted on 07/09/2009

Hi Monica, I have a 8 year old son that just recently started having seizures about a month ago. He recently had a MRI and they found a mass around the brain stem and hypothalamus gland. He just recently had an EEG and we are waiting for the results. He also exhibits symptoms of Asperger's syndrome. He does the hand flapping and outbursts of laughter at inappropriate times. None of our doctors have any answers for us, we are just seeing one specialist after another. I feel your pain and frustration. If you ever want to talk just contact me.

Jennifer - posted on 07/04/2009

i have a 4 year old daughter w/ a massive bi-lateral arachnoid cyst. She had surgery in october '08 to place a shunt to alleviate the icp. it was a programmable shunt and instead of draining the fluid from the cyst, it ended up not catching the fluid from the cyst and b/c of the catheter, the fluid created a sub-dural fluid collection (hygroma) and in march '09 we had to have surgery again to alleviate that pressure as it was pushing one set of ventricles into another . throughout this process she has had complex partial epilepsy and is currently taking her third aed (depakote) as 2 others (carbatrol & keppra have failed). She has seizures about one day per month in clusters. Keppra was horrible for my daughter and completely caused her to freak out. We went through 3 months of hell. She was incredibly moody. She currently gets speech and ot therapy once per week for the developmental delays.

She has been diagnosed w/ developmental delay, epilepsy & brain malformation. We go to a developmental ped on 7/13 b/c they feel there is mild asberger's or pdd.

i don't think that i can be much help but it's obvious that we are in the same boat. I wish you and your son much luck. I will be thinking of you both as olivia and i have been there as well.

Good luck.

Jane - posted on 06/30/2009

Hi Monica,We're raising twin grandsons with Fragile X and Autism.They are 8 years old and are non-verbal.One of them had a really bad seizure about 2 years ago lasting a little more than 2 hours jerking really hard with no responce to anyone.It took max.amount of valuim to calm the jerking in the ER and then flew him to Riley Hospital.They put him on Kepra there and it made him really agressive so they took him off of it and he takes Topamax.It had to be adjusted because he started being more agressive but the dosage was lowered a little and seems to be working so far.Although he still has small seizures if he gets really stressed. Since school has been out for the summer we have not noticed any.They did do an EEG a few months ago and said he still has Constant seizure activity in his brain and will have to take the medicine the rest of life.He also does the hand flapping and Noises but we wouldn't trade them for anything.They keep us very busy.If you need someone to talk to just contact me.