Ever since Lexie was about 6 months old, she has had very sensitive skin. Often she would develop a rash for no apparent reason, or even raised bumps on her skin. She would sometimes complain they hurt, or itch them until they bled. Just about every time she went to the doctor for any reason they would look at her skin too.
The bumps were misdiagnosed several times. First they thought just dry skin or eczema, and then once they diagnosed it as molescum. The treatment usually recommended was Aquphor, Eucerin, etc.
Then, a couple of months ago she broke into hives one day. The believed cause was an allergic reaction to sunscreen. We quickly switched to hypoallergenic sunscreen, detergent, baby wash, anything we could think of.
The rashes seemed to cease once we changed to hypoallergenic. However, the raised bumps did not seem to improve at all.
In June we were referred to a dermatologist, Dr Elliot Mostow, one of the best in the state. At our first appointment he was attentive and very responsive to Lexie and me. He did not have a diagnosis at the time. He requested that I take Lexie for a biopsy. He then referred us to the Director of Plastic Surgery at Akron Childrens Hospital.
We went for the appointment and the surgeon asked me alot of questions that made me question myself. "Are you sure you want to do this? She will always have scars. We have to put her under. And, we do not promise a diagnosis". Really? I asked myself if its something we really want to do just for some skin bumps. And, then I quickly realized, she is two years old. I have to make all decisions for her. These bumps have driven her crazy for a year and a half and we have no clue what the cause. I had to have it done, no question about it.
We went for the biopsy on July 15th. Lexie did very well. It was hard to see her in a hospital gown with an IV in her arm. But, we knew this was one step closer to finding out answers.
Days went by with no call from the surgeon. "No news is good news", I thought to myself. I did call the office a couple of times to find they had not received results yet. Then, finally a nurse called to ask if I could come in the nest morning instead of the appointment I had scheduled two days later. Her reason was the surgeon was getting ready to go on vacation and they had to push his surgeries into the day I was scheduled. While on the phone I asked if they had the results yet. She put me on hold for a few minutes and came back to say they had not received the results yet.
Lexie and I went into the office thinking the surgeon would simply look at how her wound was healing and send us on our way. But, much to my surprise he had the results of her biopsy in hand. Finally, answers! He hesitated and fumbled on his words. "Her diagnosis is something called Non-Langerhans Cell Histiocytosis". What the who? He continued, "I am only a surgeon, not a dermatologist. I don't have a lot of information for you. I suggest you do not GOOGLE this, but schedule an appointment with Dr Mostow and let him discuss it with you."
I was scared as can be. What is this thing I'm not supposed to GOOGLE? The first thing I did when I left there was go and call Adam. I had to spell it for him. And, I told him not to look it up. But, of course minutes later I received a frantic call from him that he looked it up, and whatever I did, do not look it up/
I calmly called Dr. Mostow to make our appointment for follow up. The nurse explained they were moving their office and could not see Alexis until September. I quickly went into Mom mode, full tears and all. What do you mean? I was just told not to GOOGLE whatever this thing is my daughter has and now I have to wait two months? Are you kidding me? The nurse then said they would see us first thing the next morning, and to bring the results with me because Dr Mostow had not even received them yet.
The next morning we went to see Dr Mostow. This time Adam went too. Dr Mostow came in calmly and sat down with us. From the minute he explained what she had I only had more questions.
"Its a disorder a lot like cancer. But, its not cancer. But, if it gets really bad its treated like cancer. It can be as simple as creams, or as serious as chemotherapy. Right now it appears its only on her skin, but it can also go into her organs as well. Things to watch for may be difficulty breathing, pains, etc."
Almost all of her life, she has had trouble breathing. She used to need Albuterol Solution via a nebulzer everytime she so much as thought about having a cold. And, she is on Singulair every night. So, I quickly made sure Dr Mostow was aware. His recommendations were to make an appointment with the family doctor as soon as possible to go over her diagnosis, and he strongly recommended chest xrays. He also referred us to a pediatric dermatologist at the Cleveland Clinic, and made it clear that she may eventually be referred to an oncologist. Only, because it is so much like cancer, the oncologists may have a better understanding of the treatment.
Within hours my family doctor had us in her office. She had never seen this diagnosis in any of her patients. She brought her laptop into the room to research it in my presence. She printed out the x-ray orders and before I knew it my daughter was in another hospital gown getting her x-rays.
Right now its been five days since she was diagnosed. I have spent numerous hours researching her new diagnosis. And, had five sleepless nights.
I am afraid of this new disorder that up until five days ago I didn't even know existed. And, though Ive been reading about it for days, I still don't know much. What I do know is that, it is something that she will always have. There is no cure. It can be as simple as sores on the skin, or as serious as it taking over her organs. It is not contagious. It is not hereditary. We may be dealing with creams forever, or chemotherapy if it gets bad enough. Its extremely rare. It is hard to explain to friends and family. And, it is difficult when they ask questions that I don't know the answers to.
Right now I am in a complete fog. The results of the xray cannot come soon enough.
This week, I have wanted to scream, cry, and hug my kids as tight as I can. Its all about finding answers now.
If anyone is interested in reading about her disorder, here are two websites that seem to be reliable. They seem much like the Cancer Society.
https://histio.org/sslpage.aspx?pid=291
http://www.histiocure.org/
