Our small town of approx. 8000 people has had three cases, two in the last 3-4 years (1 Lettera-Siwi; 2 Langerhans).  2 of died, one child is hanging on (13 mo. old).  Looking for information/help for this child.\n\nThanks for your time.
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What Is It?\n\nLangerhans' cells are white blood cells in the immune system that normally play an important role in protecting the body against viruses, bacteria and other invaders. They are found in the skin, lymph nodes, spleen, bone marrow and lungs.\n\nIn Langerhans' cell histiocytosis (formerly known as histiocytosis X), Langerhans' cells multiply abnormally. Instead of helping to protect the body, these cells, in massive numbers, cause tissue injury and destruction, especially in the bones, lungs and liver. Although this overgrowth of cells may be like cancer, most researchers do not consider Langerhans' cell histiocytosis to be a form of cancer. In fact, the cells appear to be normal. There are just too many of them.\n\nLangerhans' cell histiocytosis can develop in only one site or organ, or it can involve several different sites and organs. In most cases, Langerhans' cell histiocytosis that affects many body systems typically occurs in children younger than 2, whereas single-site disease may occur in people of any age.\n\nThe cause of the disorder is unknown. However, researchers are studying the possibility that some common substance in the environment — perhaps a viral infection — may trigger the disease by causing the immune system to overreact. However, researchers have not yet identified an infection or substance that triggers the disease. One intriguing observation is that almost all people with the disease whose lungs are involved are current or former cigarette smokers. However, even among smokers, this condition is rare, and smoking seems to play no role in the disease when it affects parts of the body outside the lungs. Other theories suggest that the primary cause of Langerhans' cell hystiocytosis is an abnormal immune system.\n\nLangerhans' cell histiocytosis is rare, affecting one in 250,000 children and one in 1 million adults in the United States. Although it can strike at any age, it is most common in children and young adults, with about 70% of cases occurring before age 17. During childhood, Langerhans' cell histiocytosis peaks between ages 1 and 3.\n\nLangerhans' cell histiocytosis, includes disorders previously considered separate diseases: diffuse reticuloendotheliosis, eosinophilic granuloma, Hand-Schuller-Christian disease and Letterer-Siwe disease.\n\nSymptoms\n\nSymptoms can include:\n\n    * Persistent pain and swelling on a bone, especially in an arm or leg\n    * A bone fracture, especially one that happens without any apparent trauma or after only a minor injury\n    * Loose teeth, if Langerhans' cell histiocytosis affects the jaw bones\n    * Ear infection or a discharge from the ear, if Langerhans' cell histiocytosis affects skull bones near the ear\n    * Skin rash, usually on the buttocks or scalp\n    * Swollen glands (enlarged lymph nodes)\n    * Enlarged liver, with or without signs of liver malfunction, such as yellowing of the skin and eyes (jaundice) and abnormal accumulation of fluid in the abdomen (ascites)\n    * Bulging eyes, caused by Langerhans' cell histiocytosis behind the eyes\n    * Shortness of breath and cough, if the lungs are involved\n    * Stunted growth and excessive urination caused by hormone abnormalities\n\nLess common symptoms include fever, weight loss, irritability and inability to maintain weight and fitness ("failure to thrive").\n\nDiagnosis\n\nBecause Langerhans' cell histiocytosis is rare and tends to cause symptoms that could be caused by more common medical problems, this disease often is difficult to diagnose, and diagnosis can take time. Because of this, your doctor may ask questions that are related to those other medical problems, rather than about Langerhans' cell histiocytosis.\n\nYour doctor will examine you, paying special attention to the areas of your body where you are having symptoms. If you have bone pain or swelling, your doctor probably will want you to have a se
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Hi Patz! I have really good news today and I'm glad that your question was still open.My mother was diagnosed with cancer almost a year ago and I was devastated by this news.This past months were by far the most difficult of my whole life! I've been living whith her and we had the opportunity to talk a lot,to became even closer than we already were.Yesterday,I took her to the doctor and he told us that her body is finally free of the cancer cells.I was so happy and so relieved! We know that this can came back any time but,for now,we are celebrating life! I can't think of better news!\nMoon :)
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I must say i'M not a doctor but I have had 2 friends with lupus one is in her sixties and the other is in her fifties, so it hasn't been a death sentence for either of them, and they have both had it since they were young, but with the other items you mentioned, I don't know the overall picture,  would suggest going onto WebMD and see what it says,Best of Luck
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I'm wondering if my brother is okay in Iraq. He got hit with shrapnul a few days ago. He had surgery and they say he will be fine, but I'm still worried. Who knows, something worse could happen.
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My brother had the same problem when he was 10, also my sister when she was 3 years old, that happen in Guatemala, and in the 80's.  I think after 20 years the technology have most knowledge, but even at that time and in a country with bad medical resources in that time, my sister and brother did really good.  My sister now is mother of 3, my brother unfortunately past away but was in a fire (he was firefighter and he die in a call trying to rescue 2 kids, nothing related with the cyst).  Just relax, there is some medicine to treat her and there is not surgery needed.
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I could not disagree more strongly with the first two respondents.  Proponents of immunization will point out the decline in childhood illness since mass immunizations became popular.  They fail to point out the fact that these diseases declined in European countries around the same time, BEFORE these countries initiated mass immunizations for children.  A more likely explanation for the drop in childhood illness in the improvement of sanitation that we saw at this time.  In fact, every known case of polio in the U.S. since the 1970's was caused by the vaccine.\n\nWhat childhood diseases are we afraid of anyway?  Mumps?  Mumps is an innocuous viral disease that requires no medical treatment.  Bed rest for two or three days and a soft food diet with plenty of fluid will offer the child a lifetime of immunity (something no vaccine can offer).  The mumps vaccine is usually administered along with measles and rubella -a vaccine combination that is loaded with mercury and is implicated in the shocking rise in the prevalence of autism.\n\nMeasles?  Another viral disease that requires no medical treatment.  The medical community will attempt to justify the vaccine be quoting the statistic of 1/1000 developing a type of encephalitis.  my own research and experience causes me to question this statistic.  In the middle and upper income brackets in this country, this stat is more like 1/10000.  Rare.\n\nRubella?  Pertussis?  Chicken Pox?  None of these diseases are exceedingly dangerous in this day and age, and contracting them naturally offers lifetime immunity.  This, without the dangerous side effects of the vaccines designed to treat them.\n\nI won't keep writing about all of the dangers of vaccines, but I will suggest that the single most important thing that you can do for your child is to breast feed her... a lot.  Breast milk IS her immune system for the first three months, and the microbes that she comes in contact with on mom's nipple will gently introduce her to new challenges to her immune system.  The child's nervous system is about 80% developed when he is 2 years old.  If one must get immunizations, waiting until the age of 2 will give the child the best chance to avoid injury.  (Japan's current immunization schedule begins at age 2.  Since the change in this schedule SIDS has all but disappeared).\n\nDr.B.H.
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I think you should seek a second opinion.  Sometimes pediatricians are quick to dismiss b/c they see so many of the same things all the time.  It could be something more serious (though I have no idea).  A friend of mine is in the process of getting over an extremely rare disease, and he wasn't properly diagnosed until he was taken to one of the best hospitals in the country.  Sometimes it takes some insistence and a clean pair of eyes to get to the root of the problem.  Best of luck with your kids!
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First off, I'd like to extend my premature condolences and am sorry that you're even going thru this. \n\n       Talk to your father and see if you and him can put your head together and consider legal action. I'm not saying sue. There's no one to sue, not until you get a case. There should be an investigation with this place. Take it from there, but also.....\n\n        On the other hand, my father's in the medical field and 1 day before my grandmother passed on last November she was doing fine for a couple of days after having complications. She was talking like her usual self until she slipped into a coma of sorts... My father termed that "the calm before the storm" and that he had seen that all the time at his hospital. He has been dealing with patients for almost 30 years now, so I definitely take incentive in that. This is likely what it was....she was doing ok for a time following her malady, but whatever was the underlying cause of her condition went in and took over even when she appeared to be up and around. It's a sad and confusing part of death. Apparently, it's also common.
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Most of the bad things that have happened to me have happened in my childhood.  Being abused by my mom's boyfriend when I was 12, being sent to foster homes, her marrying him after she was told about it, not meeting by biological father until I was 13.  Since I've become an adult my middle child was diagnosed with a rare liver cancer at two weeks old.  She was given 8 rounds of chemotherapy and had 80% of her liver removed when she was 7 months old.  I was on stand-by as a donor because they weren't sure they'd get it all.  Although in the darkest hours it's hard to think God was really there, but He was and I'm stronger for it.  My daughter is a thriving "terrible" healthy 2 year old and I have a 8 month old son and a 5 year old son who are healthy too.  It's easy to lose perspective and be negative, but good things are just around the bend.
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I have a wonderful 12 yrs old son that has a brain stem tumor.He has had seizures since the age of 3.He is developmentally delayed having the abilities of a 4-5 yr old.He too,is my biggest joy.\n\nThe tough part is is seeing him struggle with simple day to day tasks.He will never play sports,drive, or hold down a job.Most likely,I'll never have grandchildren.\n\nThe joys are seeing him wake up every morning with a huge smile on his face.Saying I love you ,Mommy just melts my heart.We home school and to see the pride on his face when he "got it" on a new subject.\n\nThis is a wonderful question.Thank you for allowing me to share my story.I wish you luck with your special angel and hope he goes as far as possible.With a parent like you in his court,he'll do well!!
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I have had a devastating illness in the family. I am a Citizen. I did NOT receive help for my son. Just a kiss off. The programs are bloated with people who should NOT even qualify but by false documentation or the rules of that state of not being ALLOWED to ask if they are legal citizens take away from the LEGAL CITIZENS who have paid into the system for years. I know I am blessed my son is still alive there are sooooo many others who have lost their child through inadequate medical care due to money constraints.
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Thoughts on Families who Have Lived Long-term with Pancreatic Cancer\nhttp://www.pancreatica.org/survivor_stories.html
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I was willing to give this a reasonable chance until I read this:\n\nOne early morning in '99 Range was returing from Henderson when a low-flying craft dropped a trail right overhead along Boulder Highway. "It covered my car with a sticky web-like coating and I saved a specimen in a jar. Microscopic fiber-like filaments," Range reports\n\nWhat was the outcome of the analysis of this specimen?  If this happened in 1999 don't you think she would've taken it in for analysis by now?  \n\nAnd what does being over 25 have to do with anything?  Are all people over 25 blind or something?\n\nI live in NJ so I can't say that its completely untrue but, I find it hard to believe that so few people have come forward.  A lot of people live in Vegas, I would've expected more people to have said somethin by now and I would expect this to be national news if it were true.  People aren't as complacent as you think they are, when it has to do with their long term health and the health of their children, people are usually very vigilant.
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I know you are not in australia; "but", can I suggest you call, THE ROYAL CHILDRENS HOSPITAL in MELBOURNE AUSTRALIA and ask to speak to a resident doctor..................."they are excellent............(hope the child gets well very soon) best wishes.
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Hello little brother stpolycarp77.. :)\n\nMy daughter Kira was in an auto accident on 9/9/04..her ex-husband died in the accident..so she was being charged with vehicular manslaughter..which could be a sentance of 7-15 years in prison..\n\nKira suffered a lacerated liver, which was healed in three days..8 broken ribs..a punctured lung..and a brain injury..\n\nShe had an evalution to see if she was competant to stand trial..the physcian told Kira's attorney that at this time she was not found competant to stand trial, but she may be having seizures that would impair her memory..that was two weeks ago..\n\nPraise the Lord..Glory be to God in the Highest..Alleluia..\n\nKira's lawyer called me today..she spoke with the Judge yesterday..and the Judge said that he agreed that Kira was incompetant to stand trial..but he did not agree that Kira was having seizures that was impairing her judgement..\n\nIn other words..he said Kira has suffered enough..and that the Judge was going to contact the prosecuting attorney to let him know that all charges should be dropped..My heart is so full of rejoicing right now..I can hardly contain it..\n\nWe serve a Loving and Faithful God..Kira accepted Jesus into her heart, in November 2004, she is a born again child of the Most High God..\n\nGreat question little brother.. :)\n\nI thank the Lord for your healing little sister..He is Faithful.. :)
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I doubt you are going to devine an answer to such a complicated issue on this or any forum.  First of all no one can predict the future.  Secondly the child apparently hasn't yet been diagnosed completely.  Instead of fishing around for answers that no one can possibly provide, offer your complete support to the family both the parents and children there in.\nThese questions serve no good purpose and as I mentioned aren't going to yield palpable answers.
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I will keep you and your family in my prayers. Any time one has a major surgery there is a chance of not making it through the surgery My mom,in 2003 went to her doctor(regular visit) and he sent her to the hospital they ran the usual tests and told her they would not release her,that she had no choice but to have a quadruple by-pass.So she did,she came through the surgery fine. It took a few months for her to regain her strength,she never seemed to recover from a deep depression.18 months later she died peacefully in her sleep.What concerns me,the quadruple was a fairly new venture in heart surgery at the time.Within 6 months of her surgery,her boyfriend was told he needed the same surgery.and one month later mom's younger brother was told he needed a quadruple by pass.at the same time  a friend of mine had the surgery then the doctor tells his wife she needed the same surgery a month or so later another friend of mine had to have the same surgery!These people live in different states But...they were all on social security and medicaid or medicare.There may not be any connection or anything.But it just strikes me as odd that all these people I know had to have the same surgery.I have even wondered"were these doctors using these people as guinea pigs for practice? My Mom was 70 when she died.There's no doubt that many people need this type surgery.Maybe I am just being paranoid!I guess I am still very upset at the fact the doctor said the surgery would add 10 to 15 years to her life.Her death was totally unexpected.She was not complaining of pain or feeling sick or anything. I pray your Grandpa will have a good out come on his surgery!