Finally Answers

We finally have answers to the issues Clare has been having with her skin. Clare started have issues with her skin at 4 months. She would get these inflamed, red, pussy areas on her elbows, knees, and back of head. There were also times where her entire body would turn a bright red like a sunburn. The areas would definitely bother her and she would scratch continuously until she bled. About a month ago her skin was the worst we had ever seen it. We had tried several creams and still no cure. We finally were sent to a Dermatologist.

The Pediatrician had thought it was a severe case of eczema, however, the dermatologist took one look at it and had a hunch that it was something else. Clare had a chunk of skin taken from her leg to be sent to a lab. I had to leave the room during this. It took Mitch and a nurse to hold her down so that the Doctor could do the procedure. She received her first stitch. It broke my heart hearing her scream through the door but she calmed down once I took her.

It took a week for us to get the results from the test, which was the longest week of my life. The results came back positive for the disease that she was tested for. She has a disease called Mastocytosis, commonly referred to as Mast Cell disease. Here is a short blurb about the disease:

Mastocytosis is a rare disease whose cause remains unknown. What we do know is that the disease is the result of an overabundance of mast cells that are found normally within every human being's body tissues. Mast cells contain chemicals that are released into our systems to perform their various duties. In mastocytosis, the excessive number of mast cells release more of these chemicals than the body requires. The symptoms of mastocytosis are caused by the excessive amounts of chemicals interacting with body tissue.

We are thankful that she has the benign form of the disease and that there is only about a 2% chance that it will evolve into the more serious form. There isn't a treatment for the disease we just have to try to minimize the triggers of the disease. She is on an allergy medicine that we give her every night, special steroid creams when it flares up, and benadryl during the day. We are also required to carry an Epi pen with us at all times because it is highly likely that if she gets a bee sting she will have a severe allergic reaction to the point she will have issues breathing. This can also occur with anything else she is allergic too. The disease is manageable but we definitely need to learn the triggers that cause the outbreaks. Her skin is looking so much better with her medication. The Dermatologist is hopeful that she will outgrow it by the time she is 5. We will continue to see the Dermatologist on a regular basis.