Nf

Hi T. My name is Angie. I have a son who has NF1 we just found out about it in Dec.07. He is 14 months as of today3/17/08. My husband and i do not have anyone in our familys that have this so it came as a shock to use when they told use he had Nf1. we have done tons of internet surfing an it is scary. the not knowing so i can say to you i know what you are going though. my son dose not at this point have any neurofibromas but he has more then a 100 cafe spots and he also has the freckling in his groin and arm pits. We have to go every 6 month to a childrens hospital to a Nf clinic for his vison andhearing check. Then we meat with his nf doc and due full body audits for any new simptoms. he is to youg to know what is up yet but i do have 3 older boys at home and two are old enough to know what is going on. My oldest is 13 and he went on the web and since then thinks Hunter is going to die very young like i told him the net is scary and not all is true so if you want a good place to look up info go to www.ctf.org but every time we go to Hunters check up i hold my breath at what they my find. if you would like to talk more or just tell me you stroy please let me know it is nice to have someone other then your spouse to talk with (cleveland WI)

I'm sorry. I don't know about NF either, but our son has had similar spots on his back since he was about 4 months. He's 20 months now. My husband is a physician and he does not seem to be concerned about them. Do you know why the doctor thinks these spots are any different than birthmarks or moles? What are some other things you are waiting to see? My son's spots do not look like moles. They are a little bigger, but they have not changed shape or color and that's really what I've been told you need to watch for and be concerned about.

Sorry I have no experience in this but I will ask around..

Hey I know exactly what you are going through. My ex-husband has NF and I was scared as hell that my baby was going to have it as well. When he was born the first thing we did was have him looked over and he was okay. Now that my son is 5 years old he does have a few of the little spots but that is it. I do have him checked every year. We have been so blessed because he is a normal healthy little boy. The one thing my son's doctors tells me to do is rub up and down his arms, legs, and back and chest to make sure I don't feel any little knots. I have yet to feel anything. I would just suggest that you pay attention to it but don't let it drive you crazy. I also have the name and number of a specialist that puts my mind at rest, so that may help you as well.

We have a friend who has a son - he's almost 6 with NF (I'm not sure if it's Type I or II). They do some fundraising for the NF Foundation and we have made donations in the past, so I have seen their newsletter etc and I think I remember seeing support groups and other resources there. That might be a good starting point? Here's the website http://www.ctf.org/

Sorry I can't be of more help, but I wish you all the best!

A.