Neurofibromatosis

[leatriceharvey]

My daughter is 7 and has been Diagnosed with NF1 I am kinda
confused because i dont know where to start. My Daughter
has already seen 5 diffrent types of doctors a Hematologist, Neurologist,
a Opthamologist, pediatrician and Genteic Counselor and coming soon a Neurosurgeon
i get a diffrent story each time but nothing eact and the cost even with Insurance his another story ist here resources that help with then and provide more insite and just am tired of being
in the dark i think i am going to loose it. Any and all help is welcomed.

[curt]

You can try this resource http://www.ctf.org/

[nelson312M79GG]

Hi! L. Harvey
My name is Rick and i have nf1. My sister you have to put all your trust in God. This stuff is unpredictable. I will put your little gril in my prayers and that God take care of her. Do you have nf or your husband or from a mutation (gene). I was born in a family of 12 and i was the only that has it (nf). So mine come from a gene mutation. The doctor around here still don't know about it. And i all so have lots of doctor. My friend we just have to keep our faith in God that's the only way we will make it. So just be their for your little girl and all ways tall her you love her. If you like to talk more e-mail me at [moderator note: e-mail address has been removed]

[ekimzus]

Hello,

Actually, it appears that your daughter is seeing the proper doctors. NF is tumors that can develop as bumps between the layers of skin. It can also be tumors attached to the nerves, usually in the spine.

What you want to do is a lot of research to learn about NF. As for the different opinions, first and foremost; ASK QUESTIONS. One person in 3,500 has NF. Regular doctors just do not see many ... or ANY cases.

Your Neurologist is by far the most educated on NF issues, because they are trained on the nerves, and even if they have little knowledge on NF specifically ... but they do monitor tumors on the nerves all the time.

My Neurologist also sent me to a Neuro-surgeon to be involved in my case, just in case I need surgery at any point. I would pay more attention to the specialists. As for the other doctors opinions, I would respectfully listen.

I have an excellent book on NF, one that my Neurosurgeon told me is the best ever written. Another person was kind enough to provide me with the authors (Neurologist) phone, email, and address. I will share this data if you respond to me. Mike

[Jumperswife82nd]

Mike, I would love the information. I am going to put my information in another post. I don't know how you will send the info on the book, since I guess we can't give out our emails. But I would appreciate any and all information that anyone has. Thanks!

[ekimzus]

I think email addresses may be deleted by an automatic program. Hard to tell. Some information such at a doctor's name & information, is not proper to post. Maybe this will go thru so I can get u the doctors phone, address, and name - read the following, it may get thru- my screen name on this boardat macdot ........ and the most common ending.

I purchased a book about 6 months ago, and brought
> it to my first appointment when I met with my
> Neurosurgeon. He was very impressed with the authors
> and the book. According to him (and this is a
> quote),"this is probably the best book ever written
> about NF".
>
> the book is: NEUROFIBROMATOSIS A Handbook for
> Patients, Families, and Health Care Professionals
> ... Authors Bruce R. Korf and Allan E. Rubenstein.
>
> It is detailed in every respect, and provides
> sources for more research or updated research. It
> includes "A complete diagnostic guide to help you
> recognize NF-related symptoms- including a timeline
> for when they might appear".
>
> I purchased it on Amazon.com .. the cost is
> expensive at about $70.00. It is very good quality,
> hard cover, maybe even a textbook for medical
> students. The ISBN # for 'The Americas" is:
> 1-58890-301-X ... for the rest of the world:
> 3-13-655102-2.

[SherryC]

I would love to have the title of the book to. I have NF. In fact, I have a cyst that takes up about 60% of my left lung and they are all over my body. My two children also have been diagnosed with NF.
Thanks,

[NeW MoM iN VT]

My name is Brooke and I'm a new mom. I have a 2-month old daughter Olivia Marley. At our routine visit with the Pediatrician today, she informed us that she would be making a referral to a Pediatric Dermatologist to evaluate Olivia's increased appearance of multiple cafe-au-lait spots, presumably a significant symptom of NF. Since this is all new to me, and I am a first-time mom, I'm a nervous wreck. I've done some preliminary research on NF, but I am left wondering what and if the AGE REQUIREMENT is for DIAGNOSING CHILDREN/INFANTS with NF...It just appears as though most of the diagnostic tests performed require some level of development (e.g.: balance, eye sight, bone growth, etc.) I would feel better knowing when and if I have to wait for my 8-week old daughter to be tested and diagnosed.... If you have any advice or answers for me and my 2-month old, I'd greatly appreciate it!!!

Thank you and Best Wishes, BRooKE, NeW MoM iN VT

[king dazed]

Yes, a neurologist is the best thing you can do. I was found to have nf1 a little after birth. Which started out with a tiny almost birth mark lookin thing which grew on my arm to the size of a silver dollar. Then came the fibroma. I have had two surgeries already and need many more now that I have about 9 or them on chest and arm area. I would just study up as much as you can on this and keep constant check ups. Look for any formation or bumps and color os skin change. I'm 24 year old now and besides the tumors growing and risk of it I am fairly healthy. Just keep and eye on it and if you have any questions feel free to write.


David

[snowbear]

Hi! please try the NF bulliten board x the childrens tumor foundation..Many other parents like yourself have many similar stories and advice on help..It is also for adults too...Best wishes to you and your little girl.