Thursday, March 27, 2014

Blake's first visit to the dermatologist, and first two years

I don't specifically remember how I felt as I drove the 30 minutes with my newborn baby, Blake, and my toddler, Julianna, to the dermatologist, though I'm sure I was very hopeful. In just a few weeks I had been through so much uncertainty with him. It's always a little scary when your pediatricians can't solve a medical problem and have done all they can do to help. I just felt grateful that were were able to get in when we did, instead of waiting 4 months. I really don't think I could have gone any longer with his strange symptoms.

Dr. Barrio was our dermatologist, and after taking one look at Blake, she said, "He has mastocytosis."

I had nothing to relate this to, nothing in my Mom-knowledge of medical terms rang any bells for me when she said this word. So all I could do was listen to her describe, in as simple terms as possible, what mastocytosis was. And here is how I describe it to people when they ask:

Everyone has mast cells in their blood, which contain histamines, similar to what cause allergies. Blake has an abundance of mast cells in his blood that have to be released, and the way they do that is through the skin. So when too many mast cells collect in a certain area, it causes him to get a spot, some big, some small, some light or dark. And another way they are released is when he starts to flush, or turn red all over his body. The blisters are another side effect that form on some of the spots as well.

So now I knew why he was turning red--it was called flushing. And now I knew why he kept getting spots and blisters, mostly on the crown of his head, and his torso/abdomen. But I wanted to know if this was a lifelong thing that he would have to deal with! Dr. Barrio assured me that mastocytosis is a childhood disease, and usually the flushing and blistering symptoms go away by age 2, but the spots remain and continue to fade until he reaches adolesence.

I felt very relieved, to finally know what was going on with him, and that it would not affect him during his entire life. I just had to get through two years or so of difficult symptoms...two years...can I do this?

But Dr. Barrio wasn't done yet. She informed me that his case seemed a little on the extreme side, and that while flushing, some babies could go into anaphylactic shock and possible die. So I was prescribed an epi-pen, and educated on the symptoms of shock. And when he reached 4 months old, he would begin taking antihistamines, and a medication to soothe his stomach pain, which would also be a symptom. Blake also had to get some blood tests done to rule out systemic mastocytosis, which would me he would have the disease in other areas of his body, a type of cancer that would have to be treated. And she also stressed to me that it was a very good thing Blake was seen so early on...she wanted to monitor him closely and even gave me her cell phone number to call with any concerns I had. This was getting serious...I had an epi-pen??? He could have a type of cancer?? And my doctor's direct cell phone number? But I did feel a little better knowing she would now be aware of Blake and that she would be there to talk at a moment's notice.

I also began to keep track of how many times he flushed during the day, and when he got blisters. And every time he flushed, I knew it, because he would wiggle his little body and cry and seem so uncomfortable. I felt so bad for him, that he had this going on inside his body and all I could do was watch it happen, and hold him and soothe him as best I could. Not to mention, when he got a little bigger, those spots that continued to develop began to itch him as well.

You'll be happy to know that his mastocytosis is not systemic, it only affects his skin. And I never had to use the epi-pen or see him go into shock, but I sure did watch him every time he flushed to make sure. He was my baby that I carried everywhere--he never wanted me to put him down, even when he napped. And to this day, he's still my biggest cuddler.

And I did survive the first two years, taking him in to the dermatologist multiple times a month to be checked by Dr. Barrio. By the time he was two, I was told that he wouldn't need to be seen anymore, because his flushing and blistering disappeared. I definitely had divine help during those two years, because Blake's condition wasn't the only thing affecting our family. His first year of life I was trying to figure out what was going on with my girl, Julianna, who I will begin to write about next...I think I'm ready to dive into that now.


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