Special Needs
Langerhans cell histiocytosis (LCH)
My friends son just got diagnosed with LCH this week. Anyone dealing with this? Any support groups you know of? TIA Anything I can do to support her?
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Re: Langerhans cell histiocytosis (LCH)
Hi,
My name is Leisa Greathouse. My son, Samuel, was diagnosed with LCH in June 2006. He did pass away, (you don't have to tell your friend that.) Refer her to www.histio.org. The website is filled with helpful information. If your friend's physician is not already aware of the Histiocyte Society, please tell your friend to pass along this information to the doctor(s). Also, you and your friend can find great support on Facebook. Look for the Histiocytosis Association (HA) and like them. Soon enough you and your friend will find a support group. The HA has several programs. One of them is Circle of Friends, as well as message boards.
What kind of LCH does your friend's son have: single system or multi-system involvement? How old is the child?
As far as supporting her...many things will become evident, such as going with her to appts. if no one else is able; clean her house if she allows you; fix a dinner or two; gas cards for multiple trips to the doctor once the child begins treatment, etc. Above all, if you haven't been in this situation, don't pretend you understand. Everyone is different when it comes to those things. Your friend's life and that of the families will change dramatically. Try and stay out of denial. Terms like "new normal" were not helpful or consoling to me. I wanted as normal a life has I had before diagnosis and still want it. If you got normal, appreciate it and wish the same for others.
Here is my email address is if you would like to send a personal message or have more questions. I only joined this website to reply to your post.
Leisa Greathouse
My son was dx with LCH in June of 2005 @ 6 weeks old. He did not have many symptoms; his left arm became limp which prompted us to bring him to the pediatrician. Trevor had a single lesion on his left arm. As the previous poster stated, tell her to visit www.histio.org, not Google! We were told that LCH is a very rare disease ; even rarer in infants and usually fatal (do not tell her that); and the fact that the disease stayed in just his arm EXTREMELY rare (in infants it usually goes system wide). Trevor is now a healthy 7 yo. He has been dx with ADHD and PDD-NOS, but there is no proof these problems are connected.
My best advice would be to just support your friend and be there in any way you can.
Hi, thank you so much for all the information you provided. I gave my friend/coworker the website and info on the facebook website. Her son is 2 1/2 years old. At about 2 months, he developed a rash which the dermatologists thought was excema. She had been to a few dermatologists and they didn't think it was anything important. Her son has had a continuous fever since May and they have seen every doctor at Childrens. Finally, the dermatologist at Childrens had a tissue test done and thats how they found out its LCH. She just found out on Wednesday. Its also the high risk one which is system wide. Its in his livers, spleen, brain. His bone marrow was also abnormal. His only symptoms are the rash on his head and the continuous fever which makes his very tired in the evenings.
The only reason I found out this was happening to my coworker was that I over heard her talking about her son having cavities and I told her how my son had cavities due most likely to all the pediasure he was on. I'm on this board because my son stopped eating and had recurring fevers at 12 months. His neurophil count was very low. We were sent to Infectious disease where they diagnosed him with Periodic Fever Syndrome but he never had another fever after the diagnosis. Also, we went to months of hematology for the low white count. No blood disease. He was finally diagnosed with a feeding disorders,Infantile Anorexia.
I'm so sorry for the loss of your son. I can't imagine what you and my coworker are going through.
What happens when it's system wide? I'm trying to understand it. Her son starts chemo soon.
I believe when it goes system wide, it is very difficult to treat. As your friend is experiencing , it will attack all major organs. We were followed by a pediatric oncologist for years. About 2 years ago, Trev had a rash for about a month which prompted me to call the oncologist. He ordered a biopsy just to be on the safe side. It can come back at any time, but we have been very fortunate. I hope the chemo puts it into remission and the child is ok.
Just today I received a call from the school nurse at Trev's new school. I did not mention it on the new health forms, but she noticed it on the records from the previous school. I had to relive the entire nightmare (when they found the spot they thought it was bone cancer and we had every test under the sun completed on our 6 week old).
Can you please explain to me the disease? I rather hear your personal view of it then what I read online.
My personal understanding is that this type of cell is that the histio cell over populates and instead of doing what it is suppose to do, it "attacks" and affects organs, bones, skin, the brain (it can cause a form of diabetes), bone marrow, pretty much the entire body. It is classified as an orphan disease, meaning it is extremely rare. It is a blood disorder , so we were followed by a pediatric hematologist / oncologist. It is often treated with chemotherapy.
In Trevor's case, these cells over populated and caused a "hole" in his long arm bone. He did not seem to be in pain ; we only brought him to the dr because we felt his range of motion of that arm was different than his right. His pediatrician at first thought he had a birth injury. Maybe a broken bone due to birth, but I had a c-section. A full set of x-rays were ordered and I was told later to head straight to the hospital where he had more x-rays, an MRI, a bone scan, and finally a biopsy of the bone. He did not need any further treatment; the biopsy triggered remission, but we saw the oncologist on a regular basis for 2 years I think.