"A leopard does not change his spots, or change his feeling that spots are rather a credit."
-Ivy Compton-Burnett
This is our dear Cooper. He is our baby, our happy boy. His smile is delightful and his laugh infectious. And he has curls. Glorious squishable curls all over the back of his head. And he has spots. I took him out the other night to take some photos with the express desire to capture these last two things. The curls, I'm afraid, will disappear whenever we decide to cut his hair for the first time (not yet, but it's starting to get in his eyes, so the end is nigh). The spots, we think, will be there for awhile, so if you'd like, I will tell you more about them.
Cooper has something called Mastocytosis. It is a very rare disease in which a person's body produces too many "mast" cells. We all have mast cells; they are the cells that produce hystamine, which wards off bad things that enter our body (think allergies). Cooper's body, however, over-produces these cells. The outward result? Spots. We first started noticing the spots when Cooper was about six months old. They looked like little purple-brown bruises all over his torso. Do you know what you get when you google 'purple bruise spots baby'? Leukemia. For real. Beware Dr. Google. But the combination of the spots and the Google results were enough to get us into the doctor, and after a trip to the pediatrician, the dermatologist and the allergist, we had an answer. It's not leukemia (praise God), but it is rare (so rare that our pediatrician had never seen a case of it before) and a little scary.
On a day-to-day basis the "masto" is not that big of a deal for Cooper. He has spots, and his skin is extra sensitive to things like sunscreen and tomato sauce and salty foods, but for the most part it's not a biggie. But for us and Cooper it's the 'what ifs' that are scary. People with mastocytosis have too many mast cells. That is they have too many hystamine-producing cells. So what happens if something triggers the production of hystamine in their body? All those extra hystamine-producing cells produce extra amounts of hystamine. Hystamine overload! Yikes!
Thus, although people with masto are not more likely to have allergies, if they do have an allergic reaction to something, it is much more likely to be severe, and much more likely to result in anaphylaxis. Quadruple yikes! And it's not just food that can trigger hystamine production. What happens when you are stung by a bee or a jelly fish? Your body produces hystamine to fight off the bad stuff entering your body, so even a simple bee sting could be life threatening for Cooper. And who hasn't been stung by a bee in their life time?
The good news for us is that allergies don't run in our family and so far Cooper hasn't shown signs of any food allergies (Eggs: check. Dairy: check. Nuts: check. Seafood: we're still waiting on that one). The bad news is there's no way to know what his reaction to a "hystamine-triggering event" will be until it happens. So until he ever is stung by a bee (or one of the wasps that refuse to leave our deck alone) we won't know if his reaction will be average, severe, or life-threatening.
So for now we have joined the ranks of the epi-pen carrying parents. We don't leave the house without it, never leave it in the car, and always tell the sitter about it, no matter how unlikely a hystamine reaction may seem. We keep a bottle of benadryl with us most of the time, too. And we hold our collective breaths whenever a bee is spotted within a mile of our baby boy. We're told, although not with any amount of confidence, that Cooper should grow out of the mastocystosis around the time he hits puberty. Until then, I suppose Cooper will always be able to entertain himself with a game of dot-to-dot. And really, truly, if spots (and, fingers crossed, no anaphylaxis) are the worst that ever befall our children, then I am grateful. After all, Google wanted me to believe it was leukemia.
If you've read this far, bully for you! And if you want to know more, you can learn more about mastocytosis
HERE or
HERE
But for now, how about some more pictures of Cooper (and his spots)?
