Monday, December 31, 2012

Perpetual Puzzles

There is nothing logical about having a child with Rett syndrome. Most days present you with random, intractable puzzles. I'm so exhausted from Rett puzzles.

In other parts of my life I can work on fixing problems and feel like I've been helpful. I like puzzles.  I just got a 1000-piece jigsaw puzzle for Christmas and I can't wait to tackle it.  It will be challenging and it will take me a long time to complete, but I have confidence it can be done.  Sometimes, Rett syndrome leaves me with a complete lack of confidence.

Our latest Rett puzzle involves Abby's digestive system. Much of this fall has involved too many episodes of pain, often after eating. Through a series of tests and medication trials, we've narrowed it down to her stomach.  Abby had an upper GI scope done in November, revealing nodular gastritis, but biopsy results showed no infection. The test did confirm what we already knew:  Her stomach muscles don't move when they are supposed to.  Her digestive system gets stuck.  It's a Rett thing.  The Rett mutation interferes with proper functioning of the autonomic nervous system, among other things.

Abby's parasympathetic nervous system goes on strike often.  She spent Christmas Day and Boxing Day in agony. Her communication-by-eye-gaze can be amazingly accurate and there is no mistaking her pleas for help while she's wailing away in pain. I can't fully process that emotion of feeling utterly helpless and unable to console my child. 
Even though I'd like to give up all these Rett puzzles, we work away at them, together with the help of medical professionals and other Rett families.  We finally took Abby to the ER where she was given an enema and tested for gall stones.  The gastric cleansing seemed to jump-start her GI muscles and everything began to move normally again (for now...). We have a happy teenager this week.  We have a follow-up appointment with the paediatric gastroenterologist in January.  We'll continue to work the problem for this and all the symptoms that come our way.

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