Neuro- They were wonderful!! Very thorough!! Leaning towards Tethered Cord.
Uro- Also very helpful!! Gave me a routine to do with Celia to keep her bowels cleaned out. Gave me options for bladder continence, none of which I liked for this time in her life but will keep them in mind for when she is older. Said that he can not be a "gauge" for whether she has TC because her bladder doesn't work right anyway so TC can't be based on bladder changes.
Orthopedic- Great, helpful, understanding doc!! At a stand still regarding her scoliosis because we don't know if her curve progressing rapidly is from TC or not. IF she has TC and has surgery to release it then her curve will at least stabilize if not improve some. IF she does not have TC we need to x-ray her spine every 4 months and surgery to correct the scoli will depend on progression and the rate it progresses. Opinion on TC is that it is possible and would explain the rapid increase in her scoli curve.
Bloodwork- Muscle enzymes perfect(no muscle disease),,Thyroid panel perfect,,CBC perfect,,I can't remember what else they tested(those are the ones I was worried about) but all was fine.
EMG- I was worried about this test but it turned out to be a breeze for Celia!! Results were that her muscles conduct in a normal manner(a little less on the left side but still normal) and her peripheral nerves conduct in a normal manner which points back to the central nervous system(spinal cord) being the problem. Opinion of the Muscle Specialist is that it is probably TC.
Now all of this means nothing really because the one doc that calls the shots, does detethering surgery, is not comfortable doing surgery on symptoms alone as nothing turned up on her MRI. DON'T get me wrong,,I do not want Celia to have a surgery that is not warranted!!! However there is not always proof on an MRI that TC is there. If there are more tests that the Neurosurgeon wants more tests that is fine by me!!
I just want this figured out so that Celia does not regress anymore!! It is terrible to watch your baby regress on skills that we all worked soooo hard for!! It is very hard to go backwards!!
The best thing of all of this though is that the Rehab doc poked his head in while she was having her EMG and said that Celia has spurred him to start a program where ALL the docs get together IN THE SAME ROOM and have a meeting when it comes to cases like Celia's!!!
SO there is a meeting scheduled for Wednesday morning of all the docs involved to discuss Celia's current situation and come up with a plan!!!
I pray they all show up and we get this figured out!!!
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That's fabulous that they are all going to get together to discuss her case. That seems like the way things ought to be.
I'm so sorry about the regression. You know I can imagine how hard that must be. I hope they can quickly get to the bottom of things and provide treatment that helps. Hugs.
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