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First I would like to point out my oldest chiari child. She was diagnosed with PDD-NOS (aka Pervasive Development Disorder). Then officially autistic at age 7. She was non-verbal and had a lot of problems. She even had unexplained partial complex seizures. I now believe that her problems were caused from Chiari Malformation that was not diagnosed. After years of Applied Behavioral Analysis, prayers and medications for seizures, she is off meds, pretty much "normal", with no other symptoms of past issues, except for an Asperger diagnosis. We absolutely could not be more thrilled at her testimony of success.
Second I would like to point out my next oldest child. She was a baby that was a screamer. She seemed to always be in pain. She had projectile reflux and I would work very hard on perfecting a formula filled of baby formula, karo syrup, and instant mashed potatoes. I was told she was a high needs baby. Cholic didn't even describe the non-stop screaming. I remember about a year old I asked for her to be checked for seizures but her tests were clear. Beyond that, I had no idea what was wrong. She saw a doctor to rule out mild cerebal palsy. She couldn't walk till well over 18months and even then she fell constantly. Her vision ended up with accomodative esotropia. Her joints would pop in and out of place and she would cry around the age of 5 of leg pain constantly through the night. We had no clue what was wrong and the doctors were dismissive as I was a "new mom". My first two children are only 15 months apart. I know now, that the reason she seems to have sensory integration issues is due to nerve loss from her Chiari. This is a mom diagnosis, but worth talking about. I believe as an infant she had high pressure in her head causing the constant screaming and vomiting. She almost cannot sleep, even to this day, and she is very clutsy. She is very smart and capable, but does not seem to know her "spacial areas" around her. She has issues with walking funny, as her feet over-pronate and it is from her hips. She literally lifts each hip to walk. Whenever her Dad touches her shoulder in a store to have her "keep her volume down" she will cry out as if she has been hurt. We have never understood this. He will look at me surprised and embarrassed as if everyone around believes he has hurt her. In fact, it wasn't until a week ago, I put two and two together. She can get a bruise or a cut and not know it. Her oldest sister gets mad and hits at her every now and again like kids do and she doesn't freak out. We have learned that Sarah has deep pressure sensation but not sensation with light touch. Explaining her squeals when her dad tries to stop her to talk to her and she freaks out. Then the walking, same thing. Something has caused her joints to pop in and out (I know my EDS people out there have flags going off about that). I know that her lack of feeling is probably caused from an old syrinx that has since resolved and has caused her to lose her nerves in the spinal canal. This is again mother's intution, but I definately believe this to be true.
My next child is the one that started us on this journey. She began with complaints of severe stomach pains at the age of two and it wasn't until she was 6 last year she was diagnosed with Chiari. She began to cry daily about neck and head pain. Then one day her legs wouldn't work. She wound up in the MRI and that got us to where we are today. She still struggles with heavy legs every now and then complaints, but less after surgery so far. Whenever she gets ill, the chiari symptoms are more severe.
My youngest child is the one who has opened my eyes to the lack of feeling due to nerve loss. She was not able to feel her tongue, her right side of her body, except for deep pressure sensation. She cried all the time as an infant as well and she had a lot of feeding difficulties for the first 6 weeks of life. Surgery has made her symptoms much better. She complains not of headaches as much now, but she is still complaining of the throat burning off and on. She says it will feel cold like ice and request hot cocoa. I heard the world is running out of chocolate, so I sure hope surgery gets rid of that symptom soon!
The point is, that I have a theory about chiari brains. I think they are sometimes herniated down making it more obvious. I think the chiari zero is real. I believe that these types of brains are so compacted, that the slightest illness, or swelling the body has throughout the day naturally, causes the normal swelling in the brain and then creates other issues from the brain swelling. Maybe the brainstem doesn't like being touched by the cerebellum right? So this makes my daughter's legs feel funny. Perhaps the nerve damage done from lack of space from the skull causes cholic in babies? Perhaps the reflux and other issues are really all from the same thing Chiari. Then there is Autism. Perhaps, Autism is related to the size of the brain, and where the brain is the most compressed...therefore causing the different levels on the autism spectrum. Maybe one day they will measure the different sizes of the different areas of the brain to see if there is any correlation with anything on the spectrum of behavioral and developmental delays.
I'm just throwing mom theories around. Love to hear some from others on those and what they think too. Please comment back and tell me your theories. :)
Big hugs ya'll
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