I am So. Sure. that my daughter has Pyroluria.  I’ve been reading lots of stuff about it and everything fits.  I actually hope she does have it at this point because it’s completely manageable with vitamin/mineral supplementation.  Folks on the facebook group where I learned about Pyroluria agree that you get a normal kid once supplementation is started…often within days.

I think I have it too.  But I’m less worried about me.

The other day my little one was lying in bed trying to sleep (insomnia is one symptom).  I was lying next to her because she won’t go to sleep alone (anxiety is another symptom). This was after about 8 or 9 tantrums in one day and she was just worn down (behavioral/emotional problems are another symptom).  She said to me, “Mama…I don’t know why my feelings are hurting.”  She’s 3.

I’m a behavior analyst.  I know all about behavior problems.  I fix them for a living.  This isn’t a behavior problem.  This is biological.  I’m sure of it.  There’s something going on that is causing her to have a very hard time tolerating stress.  Moving (again) was a big stressor for her.  She said goodbye to people she loved.  I know you wouldn’t think a 3 year old could form deep attachments to people outside family…but she did.  They do.

Apparently when you have Pyroluria and you experience stress your body produces Kryptopyrroles, which bind to zinc and vitamin b6, causing them to be eliminated from the body rather than being absorbed.  So you become deficient in these nutrients, but you also become deficient in other vitamins/minerals that rely on zinc/B6 to be absorbed (including magnesium, manganese, and some others I don’t recall off the top of my head).  Plus apparently Vitamin B6 is responsible for Serotonin synthesis – which is why mood symptoms are prevalent among those with Pyroluria.

I sent off the samples to the lab yesterday and they were received today.  Their website says answers within 4 working days.

Can’t wait.

2 thoughts on “Waiting

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