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Neurofibromatosis Symptoms and such...???

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Old 11-14-2007, 07:32 PM   #1
Join Date: Sep 2006
Posts: 988
neshee HB User
Neurofibromatosis Symptoms and such...???

Hello! I have an almost 4 year old DD who has some cafe au lait spots. She has had one on her lower tummy for awhile now. I have NOT measured these, will tomorrow. I think she has 4 total, again, not sure of the size, and I am going to try to get her to let me check her ALL over. I found a new spot (it is possibly a I am TRYING not to freak out! LOL!) on her inner thigh tonight after her bath. Thing is, I have never figured they would just "appear", rather grow like a freckle, am I wrong? If that is the case, then it is probably just a light bruise. I have done some limited research on neurofibro, and she only has 1 symptom (that I can tell anyway) which is the spots. I have spots, 2 that I am aware of (one of them is HUGE!) but I could have more...I know these are common and don't necessarily mean NF, but want to catch it early on if it is, as I know treatment is more advantageous if caught early. Any one who has this, or child who has it, how did you find out, what happened and what is the treatment? Is this terminal? Or livable? I just want my DD to have the best life possible, and so I am very aware of things that may or may not affect her. TIA!

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Old 11-28-2007, 11:14 AM   #2
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Join Date: Jul 2005
Posts: 33
imforty HB User
Re: Neurofibromatosis Symptoms and such...???

I have NF and I am 43 years old. (yikes!) I was born with 5 cafe au lait spots and continued to get more as I got older. As far as how it will affect her, all of us are different. Good for you for doing research! I was not officially diagnosed until my mid twenties and even then, it was a poor one. I did a lot of research on my own. You are luck there is so much information out there.

I belong to a great on-line support group. I cant put the site address here but just ****** neurofibromatois support online!

Old 11-28-2007, 06:53 PM   #3
Join Date: Sep 2006
Posts: 988
neshee HB User
Re: Neurofibromatosis Symptoms and such...???

Thanks for responding. I am not sure that she has this, like I said she has 4 spots, but they are I am not sure of what importance that is. I am going to talk to her doctor at her well-child visit about them, and what to watch for. She acts like a completely normal kid, so I am not sure what to make of them. Thanks!

Old 06-20-2008, 01:11 PM   #4
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Join Date: Jun 2008
Location: Washington State
Posts: 13
onedustytrail HB User
Re: Neurofibromatosis Symptoms and such...???

I was diagnosed right in the delivery room with Neurofibromatosis. I had 2 Cafe AuLaits Birthmarks , and 1 Tumor (Fibroma) on my leg.
I am 50 years old now and have Thousands of tumors all over my entire body. And my spots add up to over 20 now.
I also have internal tumors on my organs.
Had to have a total hysterectomy in 87 due to endometriosis and a bleeding tumor on my right ovary.
My NF is a severe case and I am in alot of extreme pain due to tumors all over my entire spine and leaking spinal fluid too.
I have tried every hard narcotic known to man kind and have now worked my way up to taking Morphine (MS Contin). I have been on it 2 and 1/2 years.
My doctor is weaning me off of it because it causes side effects. Limb twitching and ocassional heart palpitations.

If you want more information contact the childrens tumor foundation.
They are full of excellent information and can help you.

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