My eldest has had a mast cell flare up. This is probably the second worst of her life thus far- which means it wasn’t good. She missed the whole last two weeks of school because her joints were so swollen and painful, not to mention stomach pain and rash.
What caused it this time?
- She had strep throat and was on Amoxycillin. (Obviously we can put amoxycillin on our list of triggers now.)
- She ate an “illegal” (i.e. containing food coloring) lollipop at school
- She was playing outside and got bit by bazillion mosquitos
The day after the mosquito bites we noticed swelling. I just thought it was because of the sheer amount of bites and doused her with cortizone cream.
Poor kid couldn’t get out of bed for almost a whole week and is still weak from it all. I did find something wonderful this time which I have made and will keep in my medicine cabinet- mastolotion!
I swear it is magic. We put it on and her spots were gone in about two hours or less!
What is mast cell disease/mastocytosis?
Well in layman’s terms it’s this… Your body has things (histamines, mast cells…) that fight “alien invaders” (AKA allergens etc.) Some people (myself, my kids) have too many of these mast cell soldiers. What this means is that they all rush to fight the invaders but instead end up blocking the tiny capillaries in different parts of your body. Sometimes this means a rash, spots, flushing in the skin. Other times it can manifest in your joints and cause horrible joint paint similar to arthritis. It can also attack your organs, stomach, cause anaphalaxis…
Learn more about it here.
Growing up they told me I had too many of these “fighter cells” but really didn’t know much about it I guess. I was always sick and they’d say I had one thing (arthritis, pluerisy, or hystoplasmosis) and then decide it wasn’t that. I think I knew everyone at the local hospital.
The scary part as a parent is not knowing what could trigger an “attack.”
The things I have to avoid with them now are food dyes, preservatives, perfumes, heat, cold, (now some antibiotics,) stress in general.
At the ER I had a flying fit because they sat us under a commercial air freshener (which BTW they have installed in every area of Children’s Hospital, just when you thought you were safe…)
Now you see why I homeschooled for five years (and probably should now…)
The only good thing about this last episode is we finally got some Epipens.