Histiocytosis Stumps Family, Doctors in 5-Year-Old-Boy

August 15, 2013

At a young age of 6 months, my son had gotten a ring worm, only a month or so later he broke out in a rash that the doctors thought was eczema.

We got referred to a dermatologist who then ran test after test with no diagnosis.

Finally a biopsy made the discovery of Histiocytosis. After being diagnosed we started looking for a doctor that could manage his care. We started at the oncologist office and then began searching from Miami to Houston for doctors who could advise us on how to treat such a young patient

The first step was steroids and ointments and overhauling all products in our home to be “free and clear.”  Even though this whole process was strange a little scary, our son’s amazingly innocent and sweet personality helped us all to pull through.

But just as we thought things were getting better we realized that his blood work was off. His levels had risen and we needed to consult even more doctors to get a better grip on his treatment. We began taking trips to Miami to consuld with doctors and nurses–many of whom had never worked with the disease before our son.

In fact, many nurses had never even heard of it until we would walk into the hospital. It was when Brandon was 2.5 years old that things really started to go downhill. We lived in the hospital on close watch. He was put on meds to stabilize his pituitary glands and thyroid medications so he could eat.

Three kinds of chemotherapy later he started to react and finally was able to go home! Sadly, just 4 months after being home when checking blood counts at doctors office, they noticed that his liver was enlarged and his liver enzymes were off.

He has now been off all meds except to stabilize his pituitary glands and all is well. This disease is a roller coaster and I wish they knew more about it.

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