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Old 12-23-2005, 02:40 PM   #1
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Zayazmama HB User
Neurofibromatosis 1

Does anyone her have NF1 or have a child with NF1 ?

My 9 month old daughter was diagnosed with it a month or so ago. She had an MRI which show the beginnings of tumors and her left optic nerve has a tumor as well.

Im scared, mad and nervous. I have no support and I live in Utah... no support groups that I can find here either. Im a single mom and her dad just acts like its nothing.

If anyone has experience with this, please let me know.

THANKS
Jen

 
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Old 12-23-2005, 08:06 PM   #2
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Re: Neurofibromatosis 1

I don't have any experience with NF but I just wanted to let you know that it is wonderful that you care for you daughter and are seeking help. It is sad that her father isn't there for support but at least she has an amazing mother to make up for that. Best wishes and happy holidays!

 
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Old 01-11-2006, 11:35 AM   #3
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snowy owl HB User
Re: Neurofibromatosis 1

Hi, I'm new here, I have NF1, so does my son. I don't have any experience with the optic nerve tumor though, so I'm sorry I can't help you with that.

I just wanted to let you know that there are others with NF out there. I remember thinking that my family were the only ones. I hope you are able to find out more info about the problem your daughter has.

 
Old 01-12-2006, 10:08 PM   #4
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Zayazmama HB User
Re: Neurofibromatosis 1

Sorry it took me so long to reply. I couldnt remember where I posted this so it took a while.
Well, things are okay for the time being with my daughter. She just sat on her own for the first time a couple of weeks ago. She is now 10 months old. She also has IUGR (intrauterine growth retardation) and so that has made the whole situation worse. The doctors think that NF caused the IUGR.... so its loads of fun....

Thanks for the kind words! I think mostly it is the fear of the unknown that is really freaking me out.

We shall see!!

Thanks !
Jen

 
Old 01-18-2006, 08:32 AM   #5
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Maelef HB User
Re: Neurofibromatosis 1

Hi, sorry I didn't respond sooner, but i just registered and noticed your post. I have nf1 myself, and am pushing 40 years old. It's my understanding that it's not to bad as a child, tumors start growing more after puberty. It's not the tumors themselves that are the problem, it's where they grow. But with todays technology, they can easily remove these if they are in a sensitive area, otherwise you don't even know they are there. The brown spots are of no consequence at all, just simply cosmetic.

Eveything will be fine, don't worry about it. It might help you to google nf, there are lots of sites that give info on this, like ctf.org (childrens tumor foundation)

Good luck to ya.

 
Old 02-08-2006, 10:17 PM   #6
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Zayazmama HB User
Re: Neurofibromatosis 1

Quote:
Originally Posted by Maelef
Hi, sorry I didn't respond sooner, but i just registered and noticed your post. I have nf1 myself, and am pushing 40 years old. It's my understanding that it's not to bad as a child, tumors start growing more after puberty. It's not the tumors themselves that are the problem, it's where they grow. But with todays technology, they can easily remove these if they are in a sensitive area, otherwise you don't even know they are there. The brown spots are of no consequence at all, just simply cosmetic.

Eveything will be fine, don't worry about it. It might help you to google nf, there are lots of sites that give info on this, like ctf.org (childrens tumor foundation)

Good luck to ya.
Thanks for the post...I appreciate it. I think what freakes me out the most is the fear of unknown. In speaking with my daughters doctors, they all told me that the fact that her NF is so visually evident (she has more than 45 cafe aulait spots at last count) makes it worse. Her legs are bowed so much that she will not walk without surgery. She is so developmentally delayed, etc.
I googled the heck out of NF and have probably seen just about every website that has anything to do with NF. I also am a regular at ctf.org / have a division in my area so that helps.

Anyway...thanks for letting me vent.

Jen
Mama to Amayah, 11 months old w/NF and IUGR

 
Old 08-22-2006, 06:22 PM   #7
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kellisd HB User
Re: Neurofibromatosis 1

Hi,
I joined this site because I am desperately seeking information. My beautiful daughter just had her 4 month check-up/immunizations today. Her Dr is concerned that she has 11 cafe au lait spots, many the size of a quarter. The Dr wants my daughter to see a pediatric neurologist to check for neurofibromatosis. So, being a concerned mom, I looked neurofibromatosis up on the internet. And now I am terrified. I am envisioning my beautiful daughter with bulging eyes, bumps all over her body, learning disabilities, internal tumors, misshapen bones, etc, etc. This is really freaking me out. Can someone have 11 cafe au lait spots without it being neurofibromatosis???? The internet makes it sound extremely unlikely. Please relieve my anxiety and someone tell me that they have tons of spots without the diagnosis of neurofibromatosis.
Thank you,
Kelli

 
Old 09-08-2006, 11:59 PM   #8
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subaloo HB User
Re: Neurofibromatosis 1

Hi my husband and son both have nf1 and my son has an optic nerve glioma but as yet it's not causing problems. My husband is having a fibroma removed in a couple of weeks it's on the back of his head and about 2 and a half inches across so quite large.

 
Old 09-09-2006, 12:06 AM   #9
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subaloo HB User
Re: Neurofibromatosis 1

Hi Kellisd it sounds very likely that your daughter has nf. However it might not be all bad news not everyone gets all the problems my husband is 33 and his only problem is the fibroma on the back of his head. He does have fibromas on his body and he's dyslxic but thats all he leads a normal life try and get the paediatrician to refer your daughter for hearing and optic screening as this will pick up any problems before they get to bad. I hope this helps a little and that your beautiful daughter will be ok.

Let me know if there is anything else i can do.
Yours Sue

 
Old 04-27-2007, 08:37 PM   #10
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Miglet53 HB User
Re: Neurofibromatosis 1

Hi, just joined and looked to see if anyone had a mention of NF. I am 53 and have NF1.I do have severe NF, however, don't be too worried because my birth sister has the cafe' aulet spots as does her son and they do not have any tumors at all.they have symptoms and that is it.So, your daughter may never have any probs. at all.I have periphial tumors and all of mine are on nerve endings on spine and such.If you do see and respond I can get you info as to where to get support and stuff.My thoughts are with you.Take care.

 
Old 04-27-2007, 08:43 PM   #11
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Miglet53 HB User
Re: Neurofibromatosis 1

I also have tumor(s) on my left optic nerve.I am doing fine with it there.Still have vision and just have to see the specialist every couple months and if I notice anything, call him and come right in as soon as possible.It may never amount to anything.Being a single mom and having to deal with anything that is medically challengeing is difficult and my thoughts are with you..Take care and know that there are people out here that will support you at anytime!

 
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