So I’ve previously written about the mysterious rash on my daughter that I believed was caused my laundry detergent. For those of you who didn’t read that entry here’s the quick summary. In early November, when my daughter was only three months old we took her to the doctors and noticed a light rash appearing on her back. Unsure of what it was I assumed it was a reaction on her young sensitive baby skin to using Tide/Gain to wash her clothes. Around 4 1/2 months old I took her back to the doctor as the spots had gotten worse, still in my mind justifying that it was the detergent and I hadn’t done a good enough job of cleaning and re-washing the old items. Just after 5 months old I brought her back again because the spots got worse, at this point I was referred to a Dermatologist who gave her some medicine. At this point I had been randomly taking pictures to track the spots and that’s how I noticed that they had gotten worse on her back. As you can see they go left to right, November, mid December, early Jan.
Three weeks pass by, using a cream daily and use up the doses of medication prescribed by the person I saw at the dermatologist. Well in order to track better I decide to take a picture every Wednesday to see the changes. (This time the pictures are right-to-left day I saw doctor, 1 week later, 2 week later). Nothing seems to have improved at all, obviously I’m really distraught but the first timeI saw her they told me it could take months to go away so I was trying not to let it get me too bothered. At this time she informs me she’d like me to come back two days later and squeeze me in to see Dr. So n So, honestly I don’t think I ever caught his name. So I’m like okkkk what’s going on I wonder. It clearly must not be the Tide because I’ve re-washed every item in the house, on hot, on superwash, with only Free & Clear detergent. So Friday comes in, strip the baby down to her diaper and doctor walks in and literally only asked me like three questions. He leaves the room, comes back with someone else and papers and tells me “She has a rare disease called Urticaria Pigmentosa, she’ll be fine and she’ll grow out of it” followed by a few instructions of products not to use on her.
OMG WHAT?!?! Here comes the Mom freak out. The doctor literally told me very little, handed me some paper to do some reading and referred me to the Phoenix Children’s Hospital. Trying to remain calm and be happy I got the answer to what these mystery spots are on my daughter. My main focus to keep me from freaking out is that they told me that my baby will grow out of it. Well… two days later was her official “6 month” day. This is where I made a decision to educate myself, which was a bitter sweet choice. I googled Urticaria Pigmentosa! You know you never google what’s wrong with you because this evil portal will convince you that you are dying, and when it’s in regards to your precious baby as a mom it’s going to take that freakout from a small one to a huge fest of tears and fears. Oh it was terrible, my boyfriend, her father called, and I was in the middle of losing my mind! Thankfully he calmed me down. So here’s what I learned and how this decision to enter the terrifying world of the Google Search ended up with a sweet ending.
**Side Note: These next mentions are my translation, there is a good chance things are incorrect and I misunderstood. DO NOT take my word and confuse it with that of a Doctor’s or proper medical information**
Urticaria Pigmentosa is a cutaneous form of Mastocytosis. This is the most common form of this rare disease and generally found in infants, affecting only 1 in 200,000 kids. This is a build up of mast cells in the body, from what I’m gathering of my reading of all this big worded, medical-termed information I found. These mast cells release histamine when the body feels that it’s under attack, which somehow causes these spots all over my daughter’s back and spreading to her libs and stomach. From there certain things will trigger this histamine to cause her body to flush or break out in hives – so my new job is to determine what these triggers are and keep them from her. This could be food, fragrance, heat, all sorts of things. As a new mom that’s terrifying that your daughter might be not able to eat normal foods, can’t take hot baths or swim in cold water. Even more so that she’s going to grow up with these spots that make her different in a world where people are so cruel and could possibly affect her happiness or love she has for herself if they tease her or treat her differently because of these spots and from my reading it’s not 100% guaranteed either that she will grow out of these spots. See why I was crying my eyes out? Nothing in that sounds at all like something you’d want to have your baby deal with. I know there are worse things she could have wrong, but who wants anything wrong with their baby.
This is where this terrifying search turned to it’s bright side. My research led to instagram where I discovered #mastomoms. OMG other moms who are going through this and I can ask questions to. From instagram I found groups on Facebook; groups filled with other newly diagnosed mom’s trying to figure it out, experienced moms who’s dealt with this for years and even the kids who had it themselves that have now turned into adults!! The reassurance that I’ve gained from these ladies that no matter what if she gets this bad, moderate or mild – it will be okay. The comfort of knowing it’s different for every child and don’t let worse case scenarios scare you because she could easily become one of the best case scenarios. The relief of knowing if she’s somewhere in the middle, dealing with it daily and figuring it out will become easier. We have a long road a head of us but with support from others, support of her father and our families, we will do everything to help her get through this and hopefully live an absolutely normal life.