They tell me that Rett Syndrome is progressive.  They tell me it’s inconsistent.  They tell me it might get worse, but it might not.  She might have seizures, she might not.  She might need a wheelchair she might not.

The uncertainty is infuriating.  Every time something happens, it’s impossible to know if it’s an injury, a sickness, an allergy or just Rett.  So, it’s impossible to know how to treat it.  Have you ever thought about how you communicate your ills to a doctor?  You point, you speak, you tell him or her your discomfort level on a scale from 1-10.  If you couldn’t do that, how would they ever know what was wrong?

That’s a big problem.  Maggie can’t do any of those things, so the only way for people to know if something’s wrong is if we tell them she’s acting differently.

She was sick forever which I blogged about here, and here.  It got to the point where it was kind of all I could think about.  For about 6 weeks, she couldn’t go to school, I got sick, her aide got sick, the baby was quarantined, and Jenny had to hide from us in order to avoid catching whatever plague we all had.  During that time hyperventilating became a major problem for Maggie and she’d spend most of her days gasping for air.  Her breathing attacks make it impossible for her to do anything at all.  Worse, during this time her balance has started to go as well.  Walking has since become extremely difficult.

During her sickness we had put her on Lexapro to try to address the breathing.  It was unclear whether or not it helped.  But the sickness itself required antibiotics which definitely exacerbated everything.  So we took her off the antibiotics.  No change.  Then we took her off the Lexapro, no change.

So, 6 weeks ago she was running and skipping.  But now she can barely walk or breathe.  We’re at a bit of a loss for what to do next.  Doctors have little in the way of concrete actionable answers.  We don’t want to believe this is Rett Syndrome.  But if this turns out this is something simple that went untreated for 6 weeks, I’ll be disappointed we didn’t ask the right questions, but grateful there was something we could actually do to help.

Today was the first day in 6 weeks she seemed like she was getting better.  This past week she’s been laughing and giggling a lot, and I think that’s her way of saying, “I can feel like myself again.”  Today I finally got to see the light at the end of the tunnel, I think.  She was sturdier when she walked.  Her breathing calmed down for some of the day.  Still not perfect, in fact, not even back to the imperfect that it had been.  But, at least a step in the right direction.  Hell, at least, “a step.”

Rett Syndrome is inconsistent and progressive.  It’s all those things.  And that’s what makes it so difficult to manage.  It doesn’t go in a straight line, it zigs and zags; it does complete u-turns.  I made this video in the middle of one of the zags.  Hopefully now we’re getting into a zig.  All I want to do is show you the great things she’s doing.  But all I can do is film  all the U-turns and hope the people on a similar path can find some solace in knowing our story, and the people on a more typical path are compelled to become part of our story.


5 thoughts on “Is it starting to go?”

  1. We continue to pray fervently for a cure or a treatment. The struggles are hard to watch and we celebrate each victory. We hope with you….I just KNOW and believe some big things are going to happen. Bless your family and sweet Maggie.

  2. Hi i am thirteen year old girl i just recently found out about rett it is just devastating you are a unbelieveable dad maggie is amazing and i love looking at your videos i was crying for a whole day because she lost the ability to walk i live in plymouth mass i was just wondering where do you and maggie live i would love to meet her she is beatiful please take a trip

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