Holding our breath

I don’t love sharing stories about going to the doctor.  I follow enough blogs and other families of special needs kids that I get my fair share of unfortunate hospital visits.  And we’ve been pretty fortunate to have avoided them.  But now, it’s basically two in a row.  My apologies.  Three in a row if you count the hospital we were at for Grayden’s birth.  But, that was a positive story and the one two weeks ago ended up being a positive story about visiting the doctor where we found out she didn’t have scoliosis.  So, while I’d much rather only be sharing the progress she’s making, there is more to the story than that…

Whenever Maggie is sick her Rett Syndrome symptoms worsen.  Sometimes they stay bad, creating a new baseline, and sometimes they’ll revert back to what they were before she contracted whatever the illness might be.  Sometimes it manifests in her hands and she’ll drop things much more frequently, or clench her hands more, or flick her arms more.  Sometimes it’s in her appetite, where she won’t eat more than 1 meal a day.  This most recent time was in her breathing, her hands, and her appetite.  This most recent bug has exacerbated her breathing in ways that are extremely difficult to watch for us, but even more difficult for her to experience.

We see it on her face – the pain, the confusion and the sadness.  The tears of frustration when she can’t quite get her body to catch her breath.  It’s trying to say the least.

Her hand is clenched in a claw now, the remaining function in her “good” left hand, limited even from what it was.

She refuses her favorite foods at breakfast, and sometimes lunch, though she is still snacking and eating dinner.

Her breathing got so bad the other day that we decided we needed to take her to see someone.  We’ve seen enough posts from other Rett families about their daughter’s Oxygen levels dropping and hospital stays and tubes and doctors and fighting with insurance to understand the drill.

So, I loaded Maggie up and we went off to the doctor.  We knew there was nothing they were going to be able to do.  But there was a chance it wasn’t Rett Syndrome causing the issue.  There was a chance it was something else entirely and either way there was a shot they’d be able to prescribe something.

She hyperventilated the entire way to Children’s Hospital and she just couldn’t stop.  I threw her on my shoulders and ran her in – not like it was a life threatening emergency, but I wasn’t about to force her to run.  We were taken very quickly and ushered into a room where a doctor came to inspect her.

And then she found nothing wrong.

Sitting on that hospital bed, I gave Maggie blueberries.  And after 2 blueberries, she was better.  Breathing subsided.  Her Oxygen levels were never an issue.  Doctor cancelled the additional tests and we were sent home.  So, I guess what I’m trying to say is I found the cure for Rett Syndrome.  It’s blueberries.

She’s been out of school for over a week now as a result of these breathing troubles.  We can’t just force school to take care of it because it’s scary and they would be just as successful as we are at calming her which is to say not at all.  Plus anxiety makes it worse and screaming kids give her anxiety.

So, we’re left to toy around with supplements, add a little here, take away a little there in hopes that something will help and all we’ve ever been able to do is get to a place where it’s manageable.  Not perfect.  Not “nothing to worry about”.  Just a disturbance whose frequency or severity we can all cope with. We added Magnesium Citrate to go along with the Magnesium Chelate and added an L-Dopa supplement called Mucuna Pruriens.

After a day of the calming boost of magnesium her breathing was dramatically better.  It’s still near constant, but that’s better than actually constant.  Almost perpetual is different than perpetual.  We hope this is a sign of things to come – that the supplements will continue to have as positive an impact, and hopefully when she kicks this bug she’ll be back to a normal level of breathing abnormalities.

And hopefully when she kicks this bug I can stop writing about hospital visits.  But at least when I inevitably write the next one, it’ll be after 3 hospital stories that all had happy endings.

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