Our son Oscar was diagnosed with multi Langerhans Histiocytosis (LCH) in October last year, he was only 9 months. He developed a rash on his back and groin area when he was only 2 months, where we were told that it was eczema. We treated him with a number of ointments, creams, changed diet, looked at allergies but nothing would help. One night while giving him a bath we also noticed a big lump on his head, but we were told that it may be an inflamed lymph node due to him having a cold. Nothing was working for his rash and the lump was not going away. finally we took him to see a dermatologist, who took one look at his ‘ezcema’ and knew it was something more. He took a biopsy, and within two days we were told that it was LCH. He was diagnosed with skin and bone LCH in October. We are in our fourth month of treatment and he seems to be getting better. Rash and lump have gone!! Our superstar has tolerated the testing that’s involved, treatment, and then the visits to hospital when he gets ill (4 so far).
I don’t blame the doctors that had seen him and told me that it was eczema, as I now know how rare LCH is. I just wish I used my instinct sooner.
Oscar is now 13 months, has started walking, and loving his older sister. More treatment and tests still to come for our superstar.