Autism, epilepsy and arachnoid cyst

Monica - posted on 06/24/2009 ( 10 moms have responded )

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My son was diagnosed with autism at 2. I saw what I believed to be grand mal seizures around the same time. The doctors never took me seriously and told me if I had no proof on video and they couldnt catch it on an eeg there was nothing they could do. At same time though through brain MRI they found arachnoid cyst in front left lobal part of brain. At time they told me it was harmless and to put it out of my mind. Fast forward 5 years, new neurologist, new tests. He was given a sleep deprived eeg and found to be having seizures in succession one after the other. The doctor said very likely the cyst can be causing them, but that the autism diagnosis, epilepsy and behavior problems from cyst all are seperate but working together are the perfect storm of problems to make this something he will quite possibly be living with forever. We are now on our 2nd round of meds, tried levital?first with extreme mood swings, only lasted a week on that one. Now he is on depakote but we are noticing alot of hyperactivity and alot of his autistic behaviors he seems to grow out of like flapping his hands and making strange loud pitched noises are coming back full force. Can anyone out there relate to this or have been through this or happens to have a child with all these same diagnosis and experienced the same side effects with seizure meds? And if so any advice, my son is 7 years old right now and having such a hard time.

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Matt - posted on 03/12/2014

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hello everyone, i am not a mother, but i a may as well be im a single father, and my son is my world, 2 days ago my son went in to see his pediatrician for a constant head ache located in the center of his head, his right eye has become "lazy looking" and squinty when he turns his head to the right, i took him into the ER yesterday after 10 hours of waiting for a CT scan i was told he has a "Anterior Right Frontal Extra-Axial Arachnoid Cyst" which measures about 4x1.4cm, other than that the brain exam appeared normal, but things i have noticed THAT AREN'T NORMAL, from my own eyes, my son shows the following: Head aches "obvious" his mood, and who he has been has changed dramatically since halloween of last year, periodically has cases of nausea, seizures im unsure of, he had one day where he came home from school and his eyes were rolling around like he was under the influence of mind altering drugs, again he has autism so developmentally he has a "development delay" his right side of his face seems to be emotionless at times, like he cannot control it,he is ALWAYS thirsty, and wants ICE in EVERYTHING he drinks, all of this being said, i am a single father, and he is my world, the only thing i have, and love, and when i can't get direct answers from people it leaves me in a state of helplessness, the pediatrician said that at this moment in time there is nothing i can really do besides watch and make notes of changes, "for worse or better" note them, video them, take pictures, take notes, things i have been doing since i became a father as is anyways. going back to last night the nurse said that the "Cyst was in between skin and skull" but the listed type of cyst i am reading about is in direct effect of his brain cavity, the reasoning behind the CT scan last night was to detect a growth behind his right eye, so there wasn't a real whole lot they could do i guess, anyways if anyone is going through similar thing and knows of similar issues a response would be lovely.

thank you,
Matt

Stacey - posted on 02/07/2014

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My son had seizures from 9 months, diagnosed autistic ADHD and epileptic , he had an EEG that showed haywire brain activity, and MRI showed a brain cyst that they said was harmless. His behavior has deteriorated since the ages of 4- 6. He sleeps terribly . I wonde if I should look more into this harmless cyst?

Jyll - posted on 07/12/2013

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Hello. I have a son that turned 11 today and he has been diagnosed with Epilepsy, Autism, Bipolar Disorder, migraines and he also has an arachnoid cyst located in the medial temporal fossa (left temporal lobe). On top of that he also does not have a left hippocampus and has atrophy and dilation of the left temporal horn. All of this together creates that same "perfect storm". His whole life he has been sickly and has developmental delays, difficulty in school and he is very aggressive and impulsive. We refer to him as a tyrant in our home. He has fits of rage both at school and at home and completely torments his little sister constantly. He has actually said to me "it's like I can't get the mad out". These fits of rage can happen anywhere; school, church or home. He has no patience. His eyes are noticeably different sizes with the left eye being smaller than the right.
After much research and pouring over all of his medical issues beginning at birth, I am shocked to realize that a lot of these issues could be caused by this cyst. His is approximately 3cm in size. I have been told by many different neurologists that this cyst is a coincidental finding and is benign. It hasn't grown so they are not concerned with it. However, every other doctor from therapists to developmental pediatricians believe that this cyst could absolutely be the cause of a lot of his issues. Especially the behavioral issues as this is the part of the brain that controls emotions. Finally, due to left side weakness, he was referred to a neurosurgeon. I was so hopeful that they would do something. But he felt the same way as the neurologists. I was SO frustrated. Anyone can google his symptoms and diagnosis and this cyst and they can read how there is a specific correlation. You can also read where many neurologists are starting to believe that these cysts should be removed if symptomatic and that of those that have had them drained, the general portion of them saw drastic positive changes immediately following the surgery.
So after a short discussion with the neurosurgeon for a 2nd time, he agreed to do the surgery. It is scheduled for August 14th of this year. I am scared but encouraged all at the same time. I truly believe in my heart that this is going to be just what he needs and that it IS going to make a difference. I just want my son to not be so angry all the time. I want him to experience joy and pain free living. I realize that there are no guarantees that this will be a cure but I am willing to take the chance. He takes tons of medicine and he is still miserable and says he wants to die. He can't take things like Depakote due to the rages because it would cause an increase in them.
I am frustrated that we hadn't tried this earlier in life and I am also frustrated that I am having such a difficult time finding personal stories regarding this procedure. I am not sure but I believe he said that this would be an open craniotomy with fenestration. I put a call into his nurse this morning to be sure.
Please if anyone has any experience with this, post it. I am sure there are many more of us moms looking for answers and experiences. I will be sure to return to post mine. Thanks and prayers to you all. We are all in the same boat and need to stick together.

Mia - posted on 08/23/2011

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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

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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

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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

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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

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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.

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