Juvenile Xanthogranuloma

You've probably noticed the orange spots beneath Little Bean's eyes and spread across his cheeks. If you haven't, this pic is one of the clearest pictures I have of the spots (it also happens to be one of my all time favorite pictures of him!). :)

When Little Bean was about two, he started to develop very small orange spots around and under his eyes and on his eyelids. Our doctor didn't know what they were, so she referred us to a specialist--a pediatric dermatologist. It took a few months to get in to see the derm, and in that time, the marks were growing fairly rapidly. Of course, we were all concerned that it was something serious, and were anxious to see the derm in person. The derm felt that a biopsy was needed to make a diagnosis, so at two and a half, Little Bean was put under and a punch biopsy was done on the largest portion of the marks. This picture doesn't really show, but on the larger of the marks is a flesh colored, indented circle where the biopsy was done. It was supposed to be only a tiny line scar, but unfortunately, Bean pulled the stitches out in his sleep, and so now it is a much bigger, circular scar.

It was determined that Little Bean has Juvenile Xanthogranuloma, which is basically juvenile acne. It can affect children on any part of the body, usually the arms, legs or stomach, and rarely (like in Bean's case), the face. It does not hurt or itch, it is not contagious, it is not harmful to him in any way, and it is only semi-permanent. It can take up to 10 years to disappear, but the doctor did say that there is no way to predict how long he will have it, and how much it will grow. It is untreatable.

Little Bean doesn't remember his life without his "magic dot", so to him, when he looks in the mirror, "that orange thing" is just a part of his face. I'm so thankful that so far he hasn't been hurt by the questions of others, and that he can accept his looks and be happy about them despite the curious, and often hurtful questions of others. However, as he grows and becomes more self aware, I do wonder if there is anything I can do or say to prevent others from constantly pointing out his "magic dot" or to help Bean feel comfortable answering questions about it.

There are three situations where it normally gets pointed out, and I have pretty much figured out how to respond to the first two at least. Here are the scenarios that we often (I'll say at least weekly) encounter:

1) Another child points it out--"What's that orange stuff on your face?"

2) Another adult points it out--"Oh, honey! What happened to your face?! Did you fall and get hurt?"

3) Those who are already familiar with what it is (family and friends) point it out in his presence by asking me questions like, "Is it growing?", "When will it go away?", "Do you have to be careful about it in the sun?" etc, etc.

At first it made me really uncomfortable to talk about it in front of him, and I never knew what to say without going into a long story, but then I realized that he takes his cues from me. If I am comfortable with his face, so is he. So how I respond, I realized, is SO important. Since I realized this, my response is always something along the lines of, "Oh, that's Bean's birthmark. (even though it isn't a birthmark, that is just the most understandable way to explain what it is). He calls it his magic dot. It's magic because every time I see it I just want to give him a big kiss!" and then I proceed to smother him in "well-placed" kisses. The magic dot thing actually came from Bean. One day he came up to me and asked, "Mom, do I have a dot on my face"? I thought he was asking if he had "eye goo" or something because it was morning, but I couldn't see any, so I asked him where he saw it. He went over to the mirror and pointed out his biopsy scar, which is indeed dot shaped. I reminded him of the story of him going to the doctors and how they took a piece of skin and then sewed him back up. He responded with the question, "Is it my magic dot"? I thought that was a great way to describe it, so ever since then that is what we have called it.

I always wonder why people feel free to comment on this in front of Little Bean. We would never comment on an adult's appearance in their presence, so I don't see why people think it is appropriate to comment on a child's appearance. I also wonder how I can teach Little Bean to respond to these questions on his own and how I can protect him from feeling hurt or self-conscious when other's make these comments and ask questions.

Any advice? Anyone been through something like this?