Does anyone else have or have children with Neurofibromatosis type 1 aka NF1?
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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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Hi!  My son was diagnosed almost a year ago with type 1 so I understand how you are feeling.  There is no cure for diabetes.  Yes, God can heal him but all you can do is pray for that and deal with the diabetes until then because it may never happen.  God would not have given you this precious little boy to take care of had you not been able to take care of him the way he deserves to be taken care of.  My heart goes out to you and I pray that God gives you the peace that he has given me to deal with this.  I believe that both of our sons will be better people because of this.  More compassionate and sensitive to others with disabilities.  If there is anything I can help you with or any questions I can answer or if you just need someone who has been there to vent to please email me at randareed1126@yahoo.com.  There is also a message board for parents of children with type 1 on the American Diabetes Association website that has an amazing support system.  Any questions you have someone will have the answer.  There are so many caring parents on their that have felt all the things we have felt and been through it all!  Here is the link to The Place for Parents messageboard http://community.diabetes.org/n/pfx/forum.aspx?nav=messages&webtag=adaparents  \n\nGod bless you and your son.  You will be in my prayers.
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like neurofibromoatosis\nyou can say "NF"
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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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Neurofibromatosis is a single gene (autosomal dominant) genetic disease.  \n\nThe most common type is Von Recklinghausen disease (Neurofibromatosis type I) which is associated with a single mutation on chromosome 17.\n\nNeurofibromatosis type II is associated with a mutation on chromosome 22.\n\nThe fact that phenotype and genotype do not match in a lot of neurofibromatosis cases suggests a multi-factorial (or polygenic) etiology, but there is no solid data to confirm this theory.
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My childhood was horrible, with my mom.  I blocked out some things.  I guess because they were traumas.  I'm still messed up from it but there's one "positive" thing it did to me (if you can call it positive).  I'm CFBC because I have tocophobia and I don't get baby fever like a lot of women who have so many gawd-awful brats.  And I don't think I need to be bringing another human being into this world, anyway.  Yeah...I think that my strained relationship with my mother had something to do with that.
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help,\n\nI'm not sure you'll find many articles out there that addresses ADD and/or learning disabilities as an inherited condition.  I've never seen any, so I can't begin to answer what the chances are for a child born to one or both parents who have suffered the same.\n\nI would say that all one can do is to pay close attention to the child's development, and to take quick action if any developmental problems present itself.  I know this isn't much help...best of luck.
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hell no\n\nemo kids can't support someone else, they have just enough problems with themselves.
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I'm ARh- and both my husbands were ARh+.  I've had three children.  After the first one, I was given something called Anti D Serum so that the next baby would be OK.  Same thing happened after my second child.  All 3 babies were fine.  This was free (in the UK - thank goodness for the National Health Service).  Don't know what happens elsewhere.
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I have an innie.  I have 4 kids that have innies too.  Outties gross me out.
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Type 1 is not always being born with it, I am type one and was 36 when diagnosed, it is rare to have type one at my age but it is not unknown either, diabeties is also hereditary. also can be associated with autoimune syndrom, thyroid problems and also ceoliac, my doctor said the 3 are linked
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First, I'd talk to his pediatrician and/or see a neurologist (I'm sure he's had one in the past with this sort of problem).  Second, ask the doctor (or look into it yourself) about enrolling him in sometype of therapy-- I'm not sure what type would be appropriate- in addition to typical therapy (emotional type- to help him find better coping strategies)also maybe you could enroll him in something like physical therapy or occupational therapy-- where at least they could maybe fit him with some type of helmet or device or install something on the walls to protect him.  Not sure if you live in an area where this is available or how affordable an option it is (I'm from a small town where these things just don't exist) but I would strongly recommend seeing the doctors and considering some sort of therapy.  I truly wish you and your child the best of luck.
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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.
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i have 2 nephews...its kina funny because my nephews are the same ages as my little sisters...my mom and sister were pregnant at the same time...haha
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The incidence of vonRecklinghausen's disease becoming neurofibrosarcomas is very rare. In reviewing the literature for an article I wrote, I found the possibility of malignant transformation far down on the possible serious side effects. A tumor suddenly growing could be biopsied.
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I'm so sorry to hear about your loss.  One can't imagine what you went through.\n\nMy son had this at six weeks old, it was awful but with a 18month as well to look after, everything was awfult then.\n\nHe then had another attack of it at two years of age.  It was only at that time we realised how ill you can get.  I had to hold the oxygen mask to hids face whilst he fought to breathe.\n\nIt was an horrendous time & I now know that once your child has had it, they will always be suseptable for chest infections etc.\n\nI hope you get some serious answers.\n\nTake care
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Sorry about the tension. That's a pain. I too have a relative that is very different than the rest of us but I have concluded that there was some sort of genetic mutation and leave it at that.