Histicytosis

[Itwillbealright]

Anyone here who has, or knows anyone who has been diagnosed with Langerhans Cell Histiocytosis (LCH for short). If it was diagnosed some time ago it might have been called Histiocytosis X or Eosinohillic Granuloma. It’s a rare disease which has recently been reclassified as a type of cancer, although it has a strong autoimmune component. It mainly affects children but adults can also have it

Hi,
Yes I know someone’s son who had it. He’s now free of it but still has regular mris (infact one on Saturday). I am in contact with her as my ds has lesions on his liver - discovered on Friday. We go for an mri today. There are about 6 small dots showing from the ct. they are testing for a parasite (we live on a dairy farm and have dogs etc) but I also wonder if LCH is a possibility.

You should join 'our histio family' on Facebook. It's a closed group but if you request to join and let them know your reasoning you will have access to people some of whom it is likely will have had liver involvement and may be able to offer you guidance/ reassurance. Do you mind me asking how old is your friend's son and how long his has been symptom free?

I know he was 3 1/2 when diagnosed, bone (scalp) and pituary gland. A year of chemo and free since. He’s 7 next month. She’s inspirational and I know she’s done talks around the country. Yes I might join but I also don’t want to obsess on anything without a diagnosis. I know a fair bit from her and sites she has recommended.

My child aged 3 has it. Why do you ask?

Labellefrance best of luck for Friday. X

Thank you. We had brain scan yesterday, all normal and thankfully he wasn’t fazed by any of it too. I hope your little one is responding well to treatment x

Did you get a diagnosis?

My daughter was diagnosed with Diabetes Insipidus last October, an MRI scan showed she had a tumour on her pituitary gland, lesion on her skull and it was also affecting her hip. She is currently having a second longer course of chemotherapy, we seem to be heading in the right direction. One thing I will say when I was looking for an answer to her excessive water drinking last year, I found a thread on Mumsnet about a child excessively drinking water, if you do find yourself in that situation then get your child referred to the Endocrine Team at Hospital by your GP, they will do water deprivation tests and an MRI, if a tumour on the pituitary gland/stalk is discovered then your child will be referred to the nearest Children's Oncology unit.