Does anyone know about Neurofibromatosis?
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Neurofibromatosis is an inherited neurological disorder characterized by lumps called neurofibromas that accumulate on the skin. These neurofibromas are benign, slow-growing tumors caused by genetic mutations on chromosome 17.\n\nThere is another, rarer form of neurofibromatosis in which no neurofibromas occur, but other symptoms such as skeletal deformities still occur. This other type is caused by a mutation of chromosome 22.
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Wow no I have never heard of that. I think as the other user suggested, you should definitely seek a second opinion (outside that hospital, a completely different specialist) before proceeding with this radical treatment. Good luck honey!
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http://fibrovan.com/\nhttp://www.webmd.com/content/article/3/1680_51246.htm
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I see so much misinformation thrown out there, and it is pretty frightening.  I think this is a very useful forum in certain situations, such as "I have been diagnosed with condition X by a doctor.  Where can I get more info?  Or what is your experience with this disease?"\nBut too many people are out there asking to be diagnosed by strangers who are in no way qualified to do so.  I have been known to throw out this comment from time to time (I actually have it in a folder on my desk top so I can copy and paste it!):\n"With all due respect, you should not be looking for a diagnosis on this site.  I am in the medical field, and I am constantly horrified by the amount of totally wrong information/suggestions that I see here on a hourly basis.  Even if someone says they are a nurse or doctor, you have no idea if they really are or not.  On the internet, you can be anything you want to be.  There are resources out there.  Go to your doctor, or at least call your doctor.  Many offices have nurse practitioners who can return your calls and answer questions.  Call the nurse at your city/county Public Health office.  Many insurance companies have a number where you can speak with a nurse, so see if your insurance company provides that service.  At least you will know that you can trust their expertise.   I believe this site is useful for things such as…I have been diagnosed with such and such disease/condition, what is your experience with it.  OR  where can I find more information of such and such.  But asking people to diagnose you here is just plain dangerous……"\n\nIf the person is asking something that I feel qualified to answer, I will.  Or I can research for sites where they can educate themselves.  I have also come to realize that we, as parents, are not doing enough to educate our young people.  Their lack of BASIC knowledge of their bodies is appalling.
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I actually have (NF)2.Whitch of course is more rare.Also I do not have cafe'o late spots or macrocephaly.I actually did not know I had NF until my right side went numb 3  years ago.The 1st sign of NF was when I was 12 and I wasn't able to open my hand,my radial nerve had shut down.I had MRI after MRI but never an MRI of my Brain whitch looking back it baffels me.Now I am 21 and have had 3 brain surgeries.All Succesful except my first I lost hearing in one of my ears yet they took out 3 tumors.(Thats very typical for NF 2 patients) My 2nd surgery was a tumor behind my left eye(9 hour surgery),I kept my vision thankfully)Except my 3-6 nerves were damaged so I can't move my eye).My last was a the biggest surgery I have had...medulla oblongata...that could have cost me talking and walking.It was a miracle tho everything went well because it was by the brain stem wall.I have a really really really good neurosurgeon and he also is a good person.We will have 30 minute conversations about just daily life,he really cares bout me.\n\nI don't mean to scare you,I actually have great news for you.The hardest part of all this was when I was at Texasw Lutheran University and got right side numbness.We did not know why...Even went to hospital and they did not help me at all.Not knowing really was the hard part.\n\nThat is why it is really good that you are already getting MRI's.When she hits puberty I recommend that she gets one every 6 months.I think everything will be fine if you monitor it.I will pray for your daughter.\nLast about myself,I have been really strong throughout this process,and I only think I will have to deal with a gamaknife surgery for my last tumor left on my other auditory nerve.(right now it is tiny)\nAsk me any other questions you have.\nArtie\nP.S. I descided to answer q's about this to help other NF patients.In fact,I am going to NF golf tournament in SAn Antonio on Monday,helping others in the community will make me feel better also.
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Except in very rare and extreme cases, the lifespan of a child with Gorlin Chaudhry Moss Syndrome (or Ectodermal Dysplasias) is not affected by the disease.\n\nhttp://www.nfed.org/FAQ.htm#Lifespan\n\nGeneral Discussion \n \nGorlin-Chaudhry-Moss syndrome is an extremely rare inherited disorder characterized by premature closure of the fibrous joints (sutures) between certain bones in the skull (craniosynostosis), unusually small eyes (microphthalmia), absence of some teeth (hypodontia), and/or excessive amounts of hair (hypertrichosis) on most areas of the body. Affected individuals may also exhibit a mild delay in physical development (growth retardation); short fingers and/or toes; and/or underdevelopment (hypoplasia) of the two long folds of skin on either side of the vaginal opening (labia majora) in females. In addition, there may be an abnormal opening between the two large blood vessels that carry blood away from the heart (pulmonary artery and aorta), causing inappropriate recirculation of some blood through the lungs, rather than throughout the rest of the body (patent ductus arteriosus). In some cases, mild mental retardation may also be present. It is believed that Gorlin-Chaudhry-Moss syndrome may be inherited as an autosomal recessive trait.\n\n \n\n\nhttps://www.mylifepath.com/hw/articles/hw_article.jsp;jsessionid=Q5ZMTDXI3JIGDJP3YYRCGN3F5XDCKITT?articleId=HWNORD1041&fromTopics=all_topics
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Last year my son developed a very rare disease, that typically affects toddler age Asian boys ( my white son was 8) it was very uncommon, and we kept going and going to the DR, as more symptoms finally kept coming up,one DR finally thought he recognized it, but my son was forming it atypically, we kept going back, FINALLY diagnosed it!   3 weeks of being horribly ill 104 fever constant for 3 weeks! and 4 days in the hospital, and 6 months of follow up with a cardiologist. My point is KEEP taking her, they will find something, it could be a very rare thing! They brought ALL the personnel in the room to look at my son because NONE had ever seem this disease!!!
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It is amazing how prevalent a disease can be, and yet so unknown. Neurofibromatosis (NF) is the most common neurological disease caused by a single gene. Both forms, NF1 and NF2, affect more than 100,000 Americans. The Children’s Tumor Foundation Web site (www.ctf.org) says “this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.” While there is no known cure for NF, and it’s various forms, research is working toward an effective treatment.\n\nThe goal of this site is to create a local communication center for people with NF, as well as medical providers. Soon new features will be added, such as chat rooms and forums to encourage communication between the people involved. please check back often and help us grow.
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i have it.it feels like someone is pouring boiling hot water down my back.then some takes me by the head and keeps beating me into a brick wall..this illness really sucks.go to fibrohugs.com.and look for letter to normals.that about sums it up!
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http://www.ambg.com.my/abfmy1/abfm/aboutabfmalaysia.html
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Has his school suggested there is any reason to be concerned?  If his school has not suggested there is anything wrong, maybe there is nothing to worry about.\n\nHOwever, I'm not trying to alarm you, but your grandson may need to see a doctor.  You are not clear about what you are describing, but your grandson may have a disorder that needs to be addressed.  I don't want to suggest any sort of diagnosis here, but if I were you I'd see a pediatrician.\n\n\nI wish you well in getting this sorted out.
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Here's a directory that may guide you to specific sites for various kinds of brain tumors, including Foundations. Was there a specific type of brain tumor Foundation you were looking for?\n\n http://dmoz.org/Health/Conditions_and_Diseases/Cancer/Brain_and_CNS/\n\nhttp://dmoz.org/Health/Conditions_and_Diseases/Cancer/Brain_and_CNS/Support_Groups/\n\nAmerican Brain Tumor Association\nhttp://hope.abta.org/
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I don't have the condition, but below are some links to organizations and information that may help-\n\nThe National Ataxia Foundation-\nhttp://www.ataxia.org/\n\nThe NIH Friedreich's Ataxia Fact Sheet\nhttp://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedreichs_ataxia.htm\n\nThe A-T Children's Project\nhttp://www.atcp.org/
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I wish I knew, my cousin has been looking for one to..she was born with one, and had cancer of it...she's thinking of creating one..I hope you find one that helps you.
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The medical term for this, based on the symptoms you provided, is Verbalosis Cranial Rectosis. It is fairly common in the North Americas, primarily in parts of the country such as the greater District of Columbia area and can often be found in Sacramento, California. \n\nNot all persons diagnosed with this disorder even know that they have it and often pursue careers in such areas that are beneficial such as - phone sex operators, politicians, talk show hosts, and even moms. \n\nDon't get me wrong, although your friend suffers from this issue, there are things you can do to protect yourself from any adverse affects that may arise from contact with your friend. For example, you can move to Canada, buy ear protection, or even a cheap roll of duct tape.\n\nThis disorder is not fatal, however at times you wish it were. Also, it can be temporarily cured by telling your friend to STFU every once in a while. \n\nHope this helps and good luck.
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My wife had one 3 years ago and doctors left it.  It turned out to be cancer and she is still fighting it. DO NOT HESITATE GETTING TREATMENT BECAUSE IT MAY COST YOUR LIFE AND YOUR KIDS WONT HAVE A MUM
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My best friend that i chat with online has a 5 yr old daughter with CF and was diagnosed when she was only 2.  I have heard my friend talk about the sweat test but cannot remember what she had said about it, sorry.  If you leave your e-mail address i will get her to e-mail you when she returns back home the beginning of June.  She is a great person and knows ALOT about CF because she reads everything she can about this disease and how to help her daughter.