Mastocytosis

A few weeks ago, Elsie had a giant welt on her chest. We went to the docs, and he said it was *probably* a giant hive. Yes, just one. But, when it did not go away and kept getting irratated, the ped said he is pretty sure it is a mastocytoma.  But, to go to a derm to be sure.

We went to the derm, and it is in fact mastocytoma. She actually has 3 spots. He said it is not "rare" but is uncommon. And, then followed that by saying, "thanks for bringing her in, kinda neat to see something like that - we never get something like that"

What is MASTOCYTOSIS????

Mastocytosis (pronounced "mass-toe-sigh-toe-sis") is the abnormal growth of mast cells in the body (usually the skin). Mast cells are part of the immune system. The most common form of mastocytosis is when mast cells accumulate on the skin, causing reddish brown spots or bumps. In rare cases, mastocytosis can affect other parts of the body, such as the stomach, the intestines and the bone marrow. This disease is considered an 'orphan disease' because it's causes are unknown and it's believed to effect less than 200,000 individuals. It is typically pretty harmless, and in kids it is almost always completely gone by the time they hit puberty. Symptoms can include spots like a rash or hives, diarrhea, and stomach pains.   Taken from another blogger, Muffin Cake - she is a great writer, her son also has Mastocytosis.

And, here is a link about Mastocytosis

I am getting different opinions based on who you ask.  Both my Ped and the Derm both say things like "not really a big deal.  Just be careful with her.  Will go away on its own".  etc.  But, then I read about real people, and get VERY different opinions. 

Currently, she has one giant spot on her chest, and then a few smaller ones.  At this time, the spot get a reaction when touched.  And, when I say touched I mean just that.  Not rubbed hard, not scratched, not bumped.  Touched.  And, it is in such a spot that when you pick her up, you are almost guaranteed to touch it.  It swells up and get a yellowish raised thing.  It is like many many teeny tiny blisters forming one hive like welt.  Lucky for us, it has not broken the skin at all and does go down after a couple of hours.

I have included some pictures.  The first two are when a reaction is happening.  You should have seen my face when I saw it the first time, and yes it was that big the very first time is showed up.  The last pic is what is looks like without a reaction.  You can see that it is a brownish pinkish.  I guess I would say it looks like a birthmark.  Strangely, she did not have it at all at birth or at all until her first reaction.

I am hoping to learn more about this, which is hard since it is not too common (from what I have read).  But, I will of course blog about things I learn about