Tuesday, November 27, 2012

The kids are alright.

  I know, there was some song or movie with that title.  I've never heard/seen it, just heard people make references to it.  So here I am, blindly refering to something I know nothing about.

  But it came to mind today as I was asked about every individual member of my family, and some others that aren't my family, if they were alright (genetically).

  And, they're alright.  The kids are alright.

  Today we met Dr. B (we'll call him that).  Dylan's genetics doctor.  We went in to that doctors office not knowing what to expect, only knowing that we were going to be pretty upset if this was just a "meet the doc" type of appointment.  You know, the ones where they just lay out a plan of action but don't actually start it.  You see, I have been at my grandmothers house since Thursday, only having returned to my whole family this afternoon.  We (my mother, Dylan and I) stayed so long so that we would not have to make 3 trips in a week and a half.  One for turkey day, for the appt, and then for my baby shower this Saturday (!!!!!!!!).  If we had just been there for a plan of action lay out, we would have felt.... silly.  That's putting it lightly.

  Turns out Dr. B had not had the chance to look over Dylan's chart, so he knew very little about Dylan aside from what he and Dr. Veda had discussed in passing.  So we relived Dylan's entire life, age by age, milestone by milestone......born on his due date, sat at 7 months, walked at 11 months, didn't speak a word until 2.5 yrs.  That kind of stuff.  Then we talked about the hard stuff, like Dylan's "episodes" (hospitalizations) and things that lead up to them.  We talked about Autism and how close he came to a diagnosis, and he seemed to sort of laugh at that Child Psychiatrist that would see all the symptoms of it, have a child come 2 pts away on the C.A.R.S (childhood autism rating scale) evaluation and still send you home saying "what you have is a moody irritable child, not an autistic child" (oh, yes she did.).  So Dylan's chart still says he is Autistic, even though my mama heart has wanted that diagnosis at times, mourned that he didn't get it (imagine the therapies that would have been available to my child with that diagnosis and who knows where we would be, perhaps someplace better?), and promptly put on my big girl panties and moved on.  It will follow us around, mocking us.

  Sparing most of the mumbo jumbo doctor talk, and the horrible experience of "let me take a look at him", we learned that a low carb/ low sugar diet may work for Dylan and it may not.  It's not a sure thing, it never has been, it's only been shown to "help" and it may not even help Dylan at all.  His spinal fluid has not consistently shown elevated levels of that enzyme.  The only thing positive he said about it, was that he has seen people with Dylan's enzyme issues do very well with low glucose.  And I'm a little fuzzy on that, I was squawling. 

  So despite my best efforts to make Dylan less susceptible to brain inflammation, it may not do a single ounce of good.  I can keep him in a low stress environment, low carb/sugar, away from sick people, unnecessary vaccinations and he can still fall ill... which I would of course blame myself for not trying hard enough to do right for him.  What's a mother to do?  Try and try anyways?  Just try to make life as normal as possible for him?  Sit around and wait for the next time our lives turn upside down?

  I guess that's all I can do.

  So for now, we had more blood drawn.  We'll know more in March.  And we left wounded. 


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