Singular Mastocytoma

When Jameson was still little, like maybe three months old, I noticed a weird bump in the crease at the top of his leg. I thought it was odd, but just irritation from cloth diapers and it would go away. Well, a little while later another showed up on his other leg, but it was about where the elastic of his diaper hit, so I figured irritation again. Jameson has some crazy eczema so it was easy to write it off as relating to that. Over the past couple months I noticed one on each shoulder, one under his chin, another on his belly (under his diaper) and a new one forming behind his knee. I figured I'd ask his pediatrician at his well-child visit. He took a look, talked with another doctor, checked his dermatology book, and said he didn't know what they were, but probably were just due to the rubbing of his diaper and car seat. He wasn't too concerned, but said to take him to a dermatologist if they kept spreading. Well, being a mom, this didn't sit well with me. I left his office and immediately called a dermatologist, figuring I'd have to wait a few weeks to have him seen. This was Friday and thankfully they had an opening on Wednesday morning. I did a little, okay, A LOT of reading and couldn't find anything that sounded like what Jameson had. Sunday night I was in the shower with him and rubbed one of the bumps on his shoulder. It immediately swelled and by Monday morning was a huge, nasty-looking blister. If it hadn't gone down by Tuesday I was planning to take him to the ER, but it had gone down a bit and while ugly, was much smaller. Wednesday couldn't come fast enough.

I was a nervous wreck, especially since I could find no clue as to what these strange bumps were. On Wednesday I could scarcely breathe. Thankfully the boys were both performing in the Show What You Know assembly so that took care of the morning. At the office I undressed him, told the doctor about the bumps, how many he had, and what had happened when I rubbed one. He looked him over while Jameson looked straight into my eyes with a terrified expression. He was waiting for me to let him know this man-with the personality of a door, was not going to hurt him. The doctor told me to get him dressed while he grabbed some stuff and would be right back. Okaaay. No clue as to what he thought they were.

A few minutes later the doctor came back in and confidently told me Jameson has Singular Mastocytoma. A very scary sounding name for something that (hopefully) won't cause him too much trouble. These spots are an overgrowth of Mast Cells...kind of little benign tumors. When rubbed they release histamines, which is why it blistered up so quickly. What this means in a nutshell, is that if Jameson has an allergic reaction to something; food or insect bites/stings for example, it could be ugly. I'm thankful he didn't have a reaction to any of the fruit or peanut butter I've given him thus far. I've found a website and forum for parents of kids with Mastocytoma and it seems many kids have it much worse than Jameson. Other babies his age have had scary and terrible reactions to foods and heat, and since Jameson hasn't yet had a serious reaction to anything I think his case may be mild, even though he has more bumps than some other kids. Apparently it's very rare which is why I couldn't find anything when googling symptoms, but now that I can talk with other parents I feel better. He was prescribed Epipens and we now carry one wherever we go. I'm nervous to find what will set off a reaction, but I've been practicing and am prepared to whip out that pen when needed. I just hope if he has a reaction we're somewhere near a hospital and not on top of a mountain. Terrifying thought.

I'm nervous about mosquito bites since some kids have terrible reactions, and with all the time we spend outside it's inevitable he'll get bitten. Some kids simply have major swelling at the bites, while some need their Epipen. I'm very worried about bee stings, but Carson and Landon will help look out for him and I'll just have to be extra diligent in watching him outside as he gets older.

John has many food allergies so I'm definitely more cautious with Jameson than I was before, but so far so good. It's just crazy to think I'll have to teach anyone he's left with how to use it since I'm sure it'll freak them out a bit. I just hope we never find anything that is serious enough to send him into anaphylactic shock. He should outgrow this by the time he's a teenager, so it shouldn't affect him forever, but I've found parents whose kids never outgrew it. As an adult it seems to cause a whole new set of problems.

Bottom line, it's not something I'm stressing much about. We'll live our life and just always have a plan in place should the need arise. To be honest, I'm thankful it wasn't something more serious. I feel like once we learn what triggers his masto we can learn to avoid it. I have a list of medications he cannot have, as well as things to help, such as keeping him cool. Pretty much we need to avoid anything that cause the release of histamine. This was certainly not the worst news we could have gotten so I'll take it.

I was so relieved that Wednesday night John came home with beautiful yellow tulips for me and a package of my favorite chocolate covered marshmallow bears. That night we put the boys to bed and just cuddled while we ate our treats. I couldn't be more relieved. There is nothing worse than the helpless feeling you get when something is wrong with your child.