Oliver and Langerhans Cell Histiocytosis

Oliver is a one-in-a-million baby, and he has the medical condition to prove it.

I first noticed the bumps on his head sometime during my first stay in Utah, so he was around 1 or 2 months old. At first I thought they were part of a wierd, flaky, baby dandruff thing he had going on, so I just scratched them off. Then they came back, a little worse than before, and continued to get worse and worse. They almost looked like blisters. Nothing I could find online about baby rashes seemed to match.

I was alarmed and worried, but he seemed fine aside from the bumps. My mom and others assured me that babies usually have a lot of wierd rashes, and that this was probably nothing to worry about. So I didn't worry about it... all that much anyway. I was a brand new (and excessively anxious) mom, after all. I determined, however, there wasn't much I could do and decided to wait to see what his doctors said at his next check-up.

The best picture I have of what the single lesions looked like.
I don't have good ones of the early ones on his head,
but they looked similar to this.

Oliver had his 3 month check-up soon after we got back to Oregon, around Martin Luther King Jr weekend. Unfortunately, the doctor had no idea what the bumps were. They were mostly isolated to his head and hadn't spread much beyond, aside from one or two on his torso and leg. They didn't seem to be bugging him in any way. She called in another doctor for a second opinion and he was also somewhat baffled. They hazarded the guess that the bumps were moluscum contagiosum, but if that was the case, they were an atypical presentation. They told us there wasn't much they could do about them, but to keep an eye on it, and if they spread, or increased in numbers dramatically, to have him seen again.

A couple of weeks later, despite my attempts with oils and other remedies, the lesions had spread all over his body and were getting worse. We took him back into the doctors' office and saw a new doctor. After admitting she also wasn't sure what it was, she called in her colleague for a second opinion. They admitted they were out of their depth, and referred us to the Pediatric Dermatologists at Doernbecher Children's Hospital.

We met with Dr. Krol, and he told us that he thought it could be one of two things: Langerhans Cell Histiocytosis (LCH) or baby acne gone crazy. He needed to take a biopsy to make a definitive diagnosis, and he took one from Oliver's abdomen. He put a little sugar solution on Oliver's pacifier and numbed the area before he cut out the spot, and surprisingly Oliver didn't even cry - just smiled and babbled up at the doctors. I think the experience was more traumatic for me and Bran (but vaccinations are definitely the worst).

It took a week for us to hear back.

Biopsy bandage

Valentine's Day

A couple of days after Valentine's Day, Dr. Krol finally got back to us with the result of the biopsy. It had tested positive for Langerhan's Cell Histiocytosis.

The doctor did a little explaining to Brandon on the phone about what the disease was and what the diagnosis could mean for Oliver, but we started researching everything we could find about it. At this point, all we knew for sure was that his skin was affected, and that there was a significant chance other systems were involved. Brandon and I were devastated. 

LCH  is a rare disease. Rare enough that they really don't know much about it. It affects about 1:250,000 children above the age of 1, and 1:1,000,000 in children under the age of 1. Langerhans cells are a type of white blood cell. In LCH, too many cells are produced and build up in certain parts of the body where they can form tumors or damage organs. The cause of the disease is unknown. It is not really known whether it is a true cancer or if it is an inappropriate immune system response. It is not caused by a known infection, is not contagious, and is not genetically inherited. It can affect only one body system (usually bone, but sometimes just the skin), or can affect many body systems, such as skin, bones, liver, lungs, lymph glands, spleen, brain, pituary gland, and bone marrow. The only known effective method of treatment is chemotherapy. It typically responds well to treatment, but it can be fatal.

The next day we went back to the hospital to get his blood drawn and a full body X-rays taken. We set up an appointment to meet with a pediatric oncologist on Monday, where we would discover the results of his tests and discuss treatment plans.

It was the longest weekend of our lives. The thought of my three and a half month old baby having chemotherapy was heartbreaking, and that, combined with the thought that I might possibly lose him to this illness, made me start having panic attacks again. I was pretty much a complete mess, and had to fight not to slip back into depression. However, our families and friends were incredibly supportive, and we were overwhelmed by the outpouring of love and support from them. We felt strengthened and blessed to have so many wonderful people in our lives.

When Monday came, we met with the oncologist, Dr. Viola, and he told us all the tests they ran were negative for additional system involvement. Bran and I could hardly believe it; it seemed like a miracle. The negative results meant there was a 50/50 chance his LCH would not move on to other organ systems and he would not chemotherapy. Dr. Viola performed a physical exam on Oliver and said he looked like he was doing great. There wasn't much they could do for the rash - we would just have to watch and wait to see if his LCH progressed beyond skin involvment, or if the rash resolved on its own. He did say we needed to watch him extra carefully, and that we should have a lower threshold of worry than "normal" parents. Symptoms (such as fevers, unexplained irritability, or drop in feeding, to name a few) that might not be as concerning for babies without his condition could potentially be warning signs the LCH was spreading. 

The following pictures are of the LCH rash at its height.

To date (at ten and a half months old), it seems the LCH is self-regressive and Oliver will not need chemotherapy, but we're still playing the waiting game. It could come back at any time and spread systemically. We're hopeful that it will not. 

He seems to be doing great. His rash is pretty much gone, and only some pock mark scars are left. 

We are so beyond happy that Oliver seems to be doing well, and are extremely grateful and blessed to have him in our lives. He is a such a happy, fun, sweet baby and we love him so much.