Thursday, July 24, 2008
Can we take Ataxia instead?
We met with Elizabeth's Neurologist to review the results of her MRI. Her MRI is pristine not one mark on her brain, the only thing they noticed was a narrowing of her spinal cord. Her symptoms still continue to puzzle everyone, her gross motor and self help skills were between 16-20mths and her cognition and language was over 40mths. The Neurologist has many theories; Spinal Muscle Atrophy SMA, Frederich's Ataxia, Spina Bifida, peripheral neuropathies and dystrophy disorders. Many of the disorders mentioned can be degenerative and have us beyond panicked. He didn't mention to us but I noticed when he tried to elicit Elizabeth's reflexes she had little to no responses to her limbs. He concludes that none of her symptoms are related to prematurity but probably as a result of genetics or some spinal cord dysfunction. Once again we are on an emotional roller coaster and another waiting game. He sent Elizabeth for bloodwork and she once again was a brave girl letting them take 8 vials to send across the country. He has referred her to Sick Kids for EMG, nerve conduction studies and we will wait for another MRI this time of her spinal cord. The wait for an MRI continues to be 10mths, I am going to plead with her other Neurologist to put her on the urgent list at another hospital. After hearing all his thoughts ataxia seems like easy way out. Please pray that things will be okay for her and that whatever disorder she has is not degenerative and that she will stay our energetic happy little girl. We have not asked God for much in the past but at this point we don't know what to do. She means the world to us.