My 18 year old son has NF. He has many cafe spots, freckles under the arms, larger than normal head (not extremely large), short stature (5'6") we worried for a while that he wouldn't break the 5 foot measure , he was always in the 5th percentile for height while his older brother now 6'1" was always in the 95th, learning disabilities. In spite of the learning disabilities, he is very smart. Is an expert in history, esp. history of war. So far he has no tumors. No major bone malformations. No scoliosis.

My 15 year old daughter also has NF, many cafe spots, freckles under the arms, kinda short for a girl (5'3"), ADHD sort of. She has unending energy, but is using it for soccer and school. She has been in honors classes since 3rd grade and is taking 2 AP classes next year. She is a math whiz, next year she will be a sophmore in highschool and taking honors calculus. No tumors, no scoliosis, no bone malformations, etc.

So don't worry. Keep a handle on the health stuff. I am not saying your daughter will have no problems, but until you know for sure, don't worry so much. And no, that is not easy for me to say. God bless you and your baby.

My son is eight years old and he has many cafe spots. He is small for his age. He looks like he is six years old. He has no tumors,deformaties. He does have ADHD and he is above grade level in reading.

I was born with NF and diagnoised and the age of five. My mother noticed a tumor growing in the back of my head and that was when it all started. I am the smallest in my family too. In height and weight. I have many cafe spots and have many tumors. I had surgeries at the ages of 5, 7, 14, 25, 30, and will be having another one in the next month or so. I had experienced extreme pain at the ages of eight through fourteen. My son is having no pain at all. It is true when they say that each case is different. Don't worry about here size just accept the blessing of not having to have surgeries. My son is a little guy for his age but I am okay with that. Every time he says something hurts on him a become afraid and start to look for tumors. I am glad he is not up all night crying because of pain like I did. Look at the blessings first and it will make you feeling better and relax you. You must do your own research and not depend on the doctors. Your child is going to ask you questions about and you want to be able to answer them. I still ask my mother questions after 30 years.

I am 38 and am 5ft tall and very slim, I have lots of lumps and lots of cafe au lait marks.

My 7 year old is small for his age, has lots of cafe au lait marks and also bumps.

My youngest is 2 years old has cafe au lait marks, no bumps as yet, pseudarthrosis of his right tibia and is also very small for his age.

Take care and try not to worry too much!

Hi, I am sort 5ft2 (i have NF1)my bub 17mths(she has NF1) lots of cafe spots she is small she is in the 3%
but my older girl is just below the 3% for weight and about 10% for height we are not sure if she has NF she has a bump on her spine and a few Cafe marks but then she was a micro prem

hi my daughter has nf1 and has around 20 cafe au lait spots she was diagnosed very early at just 5 months after i persistantly kept taking her back to the doctor wanting the spots investigating. She is 2 and half and she is infact tall for her age. She wears clothes for 4 year olds, and is taller then most children her age. Her father is 6 foot 5 inches and i am 5 foof 7 so i think that is why she is tall. she has speech problems and is really hyperactive despite having chemo for 2 benign tumours. the fact that nf has such a wide spectrum is what i find frightening, you just don't know whats going to happen next. i can deeply relate to how you worry about the future. i drive myself to distraction late at night when she's asleep. i think its just best to take one day at a time and focus on the here and now. or thats at least what i try to tell myself.

I have NF1 and I am the smallest of 5 kids,3 half brothers and same dad sister who is exempt from NF she is younger than me and quite taller and thicker.I have a few spoys and a few fibromas but thts it... was in regular classes,dance,theater and rotc.But I did end up havving scoliosis so I am limited.I tell myself every day its great being 4'11 and under a 100 lbs I just wished people took me more serious and didnt treat me like a kid.I usually tell people I bathe in the blood and fat of babies lol to keep eternal youth but then smile and let thme know its NF.

I have NF. I am short (4' 11" tall) - my mother was 4' 10" tall (she had NF as well).

How it affected me growing up:
Despite having NF, which started causing the tumors when I hit puberty between 13 and 15), I was generally happy and liked in high school. I was not part of the in-crowd (primarily by my own choice). A few of those "in crowd" kids looked down on me because I befriended "undesirables" (seriously, those were the words of one of the girls in my Junior year class). She was referring to the overweight. She was referring to the guy with the crutches. She was referring to some of the kids I associated with that had severe acne.

I just always had an ability to see beyond a person's physical appearance and be friends with them for who they were. I think that it is possible to grow up with this disorder and learn to be ok with it. (I do have days where I have negative feelings towards myself and my bumps, but most days I do not even think about them).

I have known people to be very tall and still have NF. As for the Cafe au lait spots - at the age of 6, my sister helped me count mine and i had twenty-two of them. Most of them are lighter and faded, but still visibile.

How it affects me now:
The majority of my neurofibromas (bumps) are slightly beneath the surface of my skin, along my jawline and neck, and on my arms. You can see these if you are looking for them, other than that only when the angle of the sun hits them just right. I have a few that "stick out" more, varying in size from green pea- to garbonzo bean.

I had one very large fatty one on my right side (like a love handle) - which I had removed when it began growing faster than it had been. It weighed between 2 and 3 pounds I think.

I have had MRI imaging of my brain and have "UBOs" (unidentified bright objects) that appear in my brain, and one tumor that we are just watching. it doesn't cause any problems (as far as we can tell). My neurologist just has me get re-MRI-ed every year to check it's size.

I have a remarkable memory and have a useless skill for identifying movies based on naming the (well known stars) cast, or by closing my eyes and listening to dialogue. My husband jokes that he thinks that all of this movie trivia is stored in my UBO. :)

I am 29 years old. I am 5'3 and i have cafe spots and bumps over most of my body. The only problem that i have is a minor learning disability that's all.
I had the cafe spots develop when i was probably a teenager.
My fiance' and I want to start a family and we know the chances of our kids having NF.
Those of you that have kids? Did having NF ever scare you into not having kids?

I dont know really I have it and my momma di as well and neither of us ever got to the 5'0 mark
she was 4'8 and i am 4'10. and we both have NF she had a more siver case of it though.

I'm the shortest in my family, and the only one with NF, but I am 5'6" so hardly short. I have a twin brother, he's the shortest male but taller than me and still not really short. My younger sister is 6'.
My mother 5'9" and dad 6'3".
My daughter does have NF and she's 5'8. We both have the cafe au lait, and bumps. She does not have many small tumors I can probably count on one hand the amount she has, she's now 22.
She did have/has a brain stem tumor. Debulked when she was 16 and treated with radiation. It's still there but looks rather like a dried up kidney bean. It's been stable for 6 years. PTL.
NF is so complicated...you really can't tell what it's going to do.
Keep doing what you're doing. You're little girls look great!

My son Kyle was long for his age but I know short stature is a sympton. He passed away at 15 months so I don't know how tall he would have been. As far as judging how bad your daughter will be affected there is no way to tell. My son had a severe case but from the outside you would have never known. I have met other children that had many neurofibroma's and cal's that didn't have any plexiform neurofibromas so you never know. That is what suck's so much about this disease. My advice to you is to learn everything you can about NF. Go on the Children's Tumor Foundation website and talk to other parents.Fight for your child when your gut is telling you something is wrong and then just take one day at a time. I know easier said than done but I missed out on a lot of time with my son worrying about "what if" and now he is gone and I can't get that time back. BIG HUGS!!