My friend Tara inspired me to become a mother. She is just as anxious and crazy as I am, but she is also a hilariously funny, intelligent and wonderful woman. She had a baby, Liam, and made motherhood look possible to a neurotic character like me.
When Liam was 5 months old, I became pregnant with Ari.
Liam, who is now 2 1/2 years old, was diagnosed with mastocytisis. It is a rare condition, and can be quite severe in some cases.
Tara talks about her experience with Liam, and the road to diagnosis.
1. What is mastocytisis?
Mastocytosis, or in Liam’s case cutaneous mastocytosis, is a rare condition. Some medical persons refer to it as an “orphan disease” due to the small number of the population effected by it. It effects “mast cells”, which are also part of our immune cells and help us fight infection. It is therefore considered a hematologic illness.
Most mast cells are found in the skin, digestive system and airway linings.
When these cells are aggravated or triggered, they release histamine into the body. Allergy reducers such as Claritin or Zyrtec can be referred to as “histamine blockers”, and we are talking about one in the same fluid. This fluid, or substance, can irritate the airways, digestive system, and skin. When young children are diagnosed with this condition, it appears on their skin in the form of painful blisters. (i.e the cutaneous part).
2. When did you suspect that something was “wrong” with Liam? What were his symptoms?
Liam was born with beautiful, porcelain white skin and dark red hair. As he progressed in age (at around 7 or 8 months) I began noticing what looked like dry patches of skin on his back. I figured due to the sensitivity of his fair skin, he needed more lotion, less baths (every other day), and fragrance free products. The marks continued to grow, and I couldn’t figure out what I was doing wrong. I started with the local pediatrician, who kept reinforcing the whole “eczema” idea, although these marks looked fixed, and almost as if they were part of his skin. Not like a rash. It wasn’t until his scalp was filled with oozing blisters, which were painful to the touch, that I knew something else had to be done. This was no cradle cap. He was a year of age when I saw his first dermatologist, who was unfortunately just as baffled as the pediatrician.
3. How did you arrive at the diagnosis of mastocytisis?
Thankfully, my mother, who has been my saving grace over these last few years, was able to find the diagnosis herself. She is a retired RN, who dealt with many pediatric cases during her career. After extensive research, she was the one directing the dermatologist. A skin biopsy was ordered, and we were able to pin point the diagnosis.
4. When you found out Liam had mastocytisis, how did you feel?
I guess I was concerned at first that I had done something wrong for my baby to have this disease, but in every medical article, I could find no direct cause linked to such a diagnosis. Anyone doing research will find that there is really not that much information out there, and parents of children effected by this illness will understand that awareness is key. This condition needs to be brought to light and discussed more within our pediatric and dermatological medical communities. I think my next feeling was the fear that people would not understand the disease and ostracize my son if he happened to have a outbreak at school or in public. I can say right now that I have been one of the luckier ones because his beautiful face remains unaffected; but we all know how judgmental society is, and I want to arm him with the tools to never have to feel bad about how he looks.
5. What does Liam need to do to lead a healthy lifestyle?
We monitor his condition through proper diet (avoiding what we have found to be trigger foods- in Liam’s case pork, spinach, and larger amounts of chocolate. There is some current suspicion as well with acidic foods (particularly citrus) which I am still investigating with him through trial and error) He takes antihistamines daily, and we have found some great home based solutions (because steroidal creams are always recommended by doctors) to maintain his skin. There are some good resources out there such as the mastocytosis society, as well as mastokids.org which provide helpful hints.
6. How do you help Liam deal with his diagnosis?
I am about awareness to make sure that Liam’s community, whether it be school, family or friends are aware of his condition and the fact that it is not contagious, nor will it ever be. I try to provide my son with enough love and affection that even if there are people who chose to remain ignorant out there, he will have the strength to not let it affect him.