Tuesday, April 26, 2011


Happy Easter a few days late!  Katie enjoyed "helping" color easter eggs and then did a great job finding them in the yard.  She put them all into the basket, which is a goal we have been working on - putting things "in".  (and leaving them in!)

Tuesday, April 19, 2011

Chiari Malformation

 "Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination."

Thank you for that info National Institute of Neurological Disorders and Stroke.     http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Katie does not have this, but for about 3 months, I thought for sure, she did. So many of the symptoms matched up:  (lack of) balance, coordination and speech, hypotonia, developmental delay, and who knows if she has headaches or dizziness since she can't tell me!  The more websites I looked up, the more symptoms I found, I think over 20 total!  The girl who told me initally over the phone that Katie does not have this (reading from a report) must have thought I was nuts when I sounded all disappointed.  She said to me, "This is a good thing that she does not have it!"  I just figured it might solve all of Katie's problems if she could have surgery - maybe she'd come out talking - I have heard this has happened.  But after thinking all about it,  I am glad she doesn't have it, and we are moving along at a really good pace, with her walking progression in- particular!

Pam, someone whom I have never met, was the person who saw Katie's tv debut and got in touch with me.  She suggested I look into this because when she saw Katie walking, she said it was like watching her daughter walk..  Katie had the MRI in January and of course I was stunned when I found out she did not have it.  So I had a second opinion, and a third - and, well, they all say no.  Thank God for people like Pam!  Even though it is not what Katie has, I have something to mark off the list, and that is important to me

I hope this info might help someone else.  It is an easy thing to diagnose in an MRI and then have a neurosurgeon look at it - that's what we did anyway - 3 times!  I am posting this because it is not a well known diagnosis, and the only way to diagnose it is through an MRI (cervical spine, I believe).  There is hope if you have it - usually they can do surgery.  I met a mom like me who takes her son to SWAN Rehab where Katie does her treadmill therapy, she  had the surgery done a year ago (by Dr. Ruth Bristol here in Phoenix) and her symptoms, which came on suddenly - are gone.

 I hope this information helps someone!   http://www.ninds.nih.gov/disorders/chiari/chiari.htm