Tuesday, April 10, 2012

Not Very Satisfying

Today was Jie Jie's appointment with the neurosurgery physician assistant. I made sure that I also requested the surgeon himself to come see her too, and brought donuts, at the advice of the receptionst, to lure him in.

First, the PA started drawing pictures of the lower spine and was about to launch into a lecture on tethered cord. I cut her off right away and asked, "So, is my daugher's cord tethered or not - for sure?" That really got her attention. She said it's not. Then I said, "Okay, then what about her neck and feet?"

"What?" the PA asked, clearly in the dark and confused.

Oh, and this is after she tried to get a medical history from me that began with, "Was your daughter full term or premature?"

Had I landed on Mars? I explained that my daughter's file did include a copy of her life report from China, as I received it in her file. The PA said she's read it later. Honestly! Asking and discussing this stuff in front of my daughter!

When the big man himself finally came in, he, too, wasn't fully aware of my daughter's issues. All they were told was to check for tethered cord. Period. You should have seen his face when I told him to check the MRI. He couldn't hold his mouth shut and started asking all kinds of things and making comments to go with them, again, right in front of my daughter! The doctors never believe me at first when I tell them that my daughter's first surgery didn't occur until she was 5.5 years old. They correct me and say, "months," and I correct them and say, "No, years." Then they say, "But how did she live like that? She would have been in so much pain." Duh! Yes, my child has suffered greatly.

So, we were given another name to go with the differences of Jie Jie's upper spine. It's actually a syndrome. I was also told which gene suffered the mutation, and it has a name, though no one is clear on why this gene mutated. I asked if it could have been pollution and the doctor said no, but knowing what I do about toxins in China due to the pollution there, I do not rule this out at all. I doubt this kind of mutation is random, it's too specific.

Another thing I learned tonight, through more independent research, is that all the kids with the same association are each unique. There is no common denominator to all the kids. Some have some of the things, some have others and then there is overlap. This is why there isn't a standard of treatment except in one place in the world, but it is a growing specialty, which is promising. There are conferences for this syndrome held periodically and I'd love to attend one.

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