Monday, April 1, 2013

Dear Uncertainty

Dear Uncertainty,
 I hate you. I was so sure I was rid of you once and for all but alas you seem to leech on to everything. Can you just for once let me have a moment of clarity!? Leave me alone! Go away!

Yours truly,

 Attached to every single one of Sadie's tests there was uncertainty. The Mitochondria specialist said there was markers for mito in her muscle sample but it wasn't clear. He said she looked like a mito patient except she hasn't had enough permanent regression to fit the bill.  I'm a little tired of hearing from doctors that test results don't show much significance but looking at Sadie there are significant problems. The appointment wouldn't be half so frustrating if I hadn't gone through great lengths to make sure the results were clear. I couldn't even see this doctor without a final mitochondria diagnosis so when he spent half of our hour appt trying to find these unclear results it took everything in me not to throw a fist of misdirected rage into his stupid outdated computer. We don't really know we're to go from here, I don't think I want to put Sadie under the knife again for a muscle biopsy. You can read about her first muscle biopsy gone awry HERE. Let me make this clear, I do not want my daughter to have a mitochondria disorder! But it fits better then another diagnosis and there's precautions to take when dealing with this regressive disorder. The specialist is urging us to do further testing. Testing that insurance won't cover and has a 50% chance of giving UNCERTAIN results. He said that according to Sadie's history we might be looking at the 8% of mito patients that have Austism Mito but looking at her now, he's not sure about autism. We hear this from most doctors but spend an hour with my kid and you'll know she's quirky, spend hours treating her And you'll be pretty convinced, if you've known her her whole life you know without a shadow of a doubt that she had typical autism but three quarters of our life spent in therapies has helped in her case. Basically the better Sadie gets the harder it is to diagnose her. Gahhhh!!!! 


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