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3yr old with a Posterior Fossa Arachnoid Cyst.

By December 2, 2010 - 2:27am

Hello Everyone. I am a newbie. I was wondering if anyone had any advice for me. My daughter is 3 yrs old. She fell 3 months ago and had a seizure. She has since done it 3 more times. After the first time they found a AC on a CT scan which I found out by overhearing a ER Doc. They were not going to tell me, because it was an incidental finding and completely "unrelated"and "normal." I also need to mention that my girl was diagnosed PDD-NOS at 21months old. It is a developemental disorder. After her latest fall 2 weeks ago and subsequent seizure, I demanded a MRI. I demanded a copy as SOON as I could, the radiologists has not written his report yet. I am just looking over it horrified. It does not seem "small"or "insignificant" to me. Everything I read on the internet(antidotal reports) seems to be ALL negative and I am scared. It is 3.5X2.25cm and it is between her occibital lobes(on the outer edge) and on top of her cerbellam. It looks larger on the right side and there is some scull scalloping. I have to add that she is 3 now and was reevaluated and has lost her PDD-NOS diagnosis trading it with a mild Speech Deley and Auditory Processing disorder diagnosis. She has been evaluated 2 times and both DRs spend a lot of time with her, they both stated that she is atypical and very splintered in her deficits and strength.This made her hard to correctly diagnose(or as I like to say "put into the right box") She has trouble with fluid language and complex conversation. Her other "symptoms" are some toe walking,extreme emotions(not unbearable-no tantruming) Occassional anxiety and confusion.Seizures after mild head bumps(30 seconds long approx) The trouble I ran into the first time around (after the CT) with the Neuro sergeaon was that he made a CLEAR distinction between the Autism and the AC. Unequevically saying that the are not related. Autism is just behavior symptoms....someone with a head injury can present as autistic by diagnostic standards. I dont understand why he can't even entertain that they may be linked. Does anyone have any simular situations or insight? Since she is so young and has a hard time articulating...I have no idea if she has any other symptoms. Anyone with a simularly placed AC? We have an appointment with a neurologist next week.
Thank-you so much in advance for any and all advice!
-One stressed Mamma!

By October 24, 2011 - 7:53am

Oh my goodness, GreenRumble- it has been a while since you posted but I would love to get an update on how your little girl is doing.
My story is similar. My son was dx pdd-nos around age 3. Also tourettic-OCD. Lots of tics and compulsive behaviors... and serious receptive language problems. At age 8 we incidentally discovered a large left temporal ac. It is causing pressure on an artery and frontal lobe as there is a midline shift from the cyst.
When we found out I immediately made 2 appointments with different neurosurgeons as I knew I would want a second opinion no matter what. AMAZING THE DIFFERENCE BETWEEN THE TWO OPINIONS!
The first place we went to was Children's Hospital in D.C. Doctor told us he was 99% sure the developmental delays had nothing to do with the cyst. Also said- leave it be and just keep checking to make sure it isn't growing.
The second place was John's Hopkins, This doctor (partner of Ben Carson) said developmental problems, tics... etc are likely a result of the cyst.*** Also felt that relieving pressure through fenestration could possibly improve auditory processing- but he was very careful not to raise our expectations regarding cognitive improvement. He said sometimes there are notable improvements, and sometimes there aren't. His recommendation was to go through with the surgery but let us know that we could take a wait and see approach if we choose. We told him that we had gotten 2 opinions and were not sure, and he offered to take our son's case before a neurosurgery panel (including BenCarson) so that we could hear other professional opinions. As of now we are waiting to hear back from the panel.
***He said if a child came in with a temporal lobe cyst and language delay at age 4 or under he would RUSH them into fenestration in hopes of reaching maximum development. He said by age 7 development lost because of the cyst would not be able to be restored.
I hope you found good care for your daughter and things are going well.

October 24, 2011 - 7:53am
By December 2, 2010 - 8:03pm

Thank-you! I have done as you have suggested.

December 2, 2010 - 8:03pm
By Expert HERWriter Guide Blogger December 2, 2010 - 6:44pm

GreenRumble - Thanks for sharing your story and welcome to the group. I hope you will hear from some of our members and I also suggest you join the Arachnoid Cyst Awareness Network as most of the focus on EmpowHER is on adult health.

Many people have stated here that one of their hardest struggles was finding a physician who really understood ac's and was able to provide the type of information and support they needed. It sounds like you are a strong advocate for your daughter, and I hope some of other advocates will come forward soon to help you. Hang in there!

December 2, 2010 - 6:44pm

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