Posts Tagged ‘pyrole’

Pyroluria

March 18, 2015

Possum is 8 years 10 months

Bandicoot is 6 years 8 months

Little Princess is 4 years 2 months

Well, it has been quite a time around these parts. 

Sadly, although I was becoming mobile in my last post (in August!), I still had a number of months of incapacitating pain ahead.  In January it looked like I was finally experiencing the carrot of remission from the pain.  (Really, any condition that is accompanied by words like “remission” and “mortality” are not things I want to have too much to do with.)

Instead of the hoped for 10 year window, I had less than two months of freedom from near continuous joint pain.  On the up side, although it is rather, um, unpleasant, I do have movement now.

But really, that is just the tip of the crazy iceberg.

Poor Bandicoot has spent his life with gut pains.  The doctors have done various tests over time, but found nothing.  One day I said to him, “You don’t talk about the pains in your tummy any more – have they gone away?”  He turned to me and said, “The doctors think I make it up, so I will just have to put up with it.  There is no point in me telling anyone.”  Doesn’t that just break a Mumma’s heart?

So when I discovered a naturopath who had helped some friends with similar issues, I figured I had nothing to lose.

The truth is, I am a bit on the fence with natural medicine.  This was all a big leap of faith for me.  However, she is a former biochemist and pharmacist, so I felt she would take the science seriously.

The good news is that Bandicoot was suffering from a parasite.  It was diagnosable with a standard test (ordered through my doctor, *ahem*) and relatively easily treated.  He hasn’t had the pains since.  I cannot imagine how much better that must make him feel.

The down side is that he was also diagnosed with pyroluria (or pyrrole, or krypropyrrole or, well, there are another couple of older names, too), which is a metabolic disorder.  Possum and I have also been subsequently diagnosed.

This is managed by a restricted diet and supplements of the nutrients our bodies are not metabolising from food.  Apparently we will all be new people.

I can’t wait.

Because right now, I am an exhausted wreck.  Some of the dietary changes did not agree with us and we had family wide “failure to thrive” – as good as it sounds.  It looks like it will take a lot of tweaking to find what works for us.  And in the meantime my life is food.  Every meal, every snack requires thought and recipe searching.  Do you know how often growing kids eat??

There is, of course, some kind of humour in this.  I learnt to cook as a preschooler.  (Not that we were called “preschoolers” back then.)  I read recipes for inspiration, but I really don’t know when the last time was that I actually followed one to cook.  I don’t like being that boxed in.  But now that my pantry is filling with all sorts of things I have never used before (chia, sorghum…) and so many of our staples have disappeared (tomatoes, ham), it seems I need a recipe to pour a glass of water.

I am so glad we decided to use a packaged curriculum this year to cut down on planning and recording time for me, although we had thought we would use that time for some other projects we had planned, not trying to work out what is for dinner.