Neurofibromatosis Support Group

Post edited by: Igottheblues, at: 03/12/2008 10:46

20 years ago, NF was almost unheard of. After lots of poking, probing, xrays, pictures, lots visits with dr.'s I was finally diagnosed. My mom did a lot of researching, took me to all the medical specialist and support groups. Back then, I didn't appreciate it. I was too young. I was angry. Now that I'm older, I realize that my mother set me on the right path. I'm married and have 2 children. Before we decided to have kids, we went through genetic counseling. My son, who is 13 years old did not inherit NF 1. I got him genetically tested when he was 6 months old. My younger son, who is 22 months old was diagnosed with NF 1 through amniocentesis. All the specialist that I saw when I was 10 were not around. I had to do my own research, and right he is being followed by all the medical specialist who are familiar with NF. Neurologist, MD, Ophthalmologist, etc. Other than the cafe o lait spots, he doesn't seem to have any other complications. Yes, I do worry about him, and it is difficult, but I'm confident. I keep myself updated and well informed about NF and any new deveopments. I have a lot of support from family, friends, medical(including psychologist).

My mom has told me that in the beginning, she felt extremely guilty, and sorry for me. She could have chosen not to do anything...to live the rest of her life feeling sorry for herself and sorry for me, but she didn't, and I followed in her footsteps. I chose to live. My mother gave me the best gift of all....Knowledge. You know what they say, "Knowledge is power"

I'm not going to lie to you, it's going to be difficult, but I'm confident with the right support you can get through this. I think the first step is to talk to a Psychologist, a therapist, someone who you can talk to.

You didn't metion wether or not your daughter was gentically tested for NF. If not, then getting her tested would be the next step.

Get yourself connected with the appropiate medical personnel and support groups. You can empower yourself by learn more about NF...Trust me, this is the best gift you can give to your daughter, but most immportantly its the best gift you can give yourself.

hi gavinsmon, are you familiar with the nf chat room? there is a mother in there that has children with what you are looking for. her name in the chat room is bigboldbeautifulbea. she is very delightful and very smart with the problems. good luck

Thanks for the info.I appreciate it I don't know anything about the NF chat room but I will find it thanks-Kim

Here is exerpt from some of their educator's material:

BEHAVIORAL PROBLEMS Behavioral problems associated with NF1 may include similar problems related to attention deficit disorder or hyperactivity as occur in the general population. They also respond to similar interventions: individualized attention, behavioral modifica-tion, and, in some cases, medication. Medication should never be used as a sole approach, but can be helpful in some children with NF1, just as in the general population. Another form of behavioral problems sometimes associated with NF1 should be mentioned. Some children have a migraine syndrome that includes headache, malaise, stomachache and dizziness. These children may feel fatigue and even appear ill. Many will miss many days of school, or be sent frequently to the school nurse. Headache may be a minor feature, and may not be present at all. A medical evaluation should be initiated if these symptoms are present. Children with NF1 and migraine can respond dramatically to appropriate medications.

You can find more information by viewing the full literature here: http://www.nfaa.org.au/PDFs/NF1_Guide_for_Educators.pdf

I cannot stress enough the importance of learning all that you can about Neurofibromatosis. You are your (& your child's) own best advocate!!

(((HUGS)))

Tahnee

How old is your daughter? Is she showing any signs of NF? Just remember, that a 50% chance of having it is also a 50% chance of not having it. Try to stay positive. I know this is scary, especially when you first come into it all, but stressing only makes it harder, believe me I understand because I have been there. Yes, you will always worry, but if you work at researching this conditon and do your best to become educated about as much of NF as you can, it really will empower you to face things easier. With knowledge comes power, and with power comes strength,... with all those things, you will be better equipped to fight things if they arise.

It is not an easy thing for anybody to deal with. I still struggle, too, and I still worry every time we go in for our follow-ups, etc., etc. It lingers, but with knowing what to expect, by researching, and by standing my ground with the doctors, I have become a better advocate for my daughter. I know I say that a LOT, but really, really is the truth. We really are our own best advocates.

Please feel free to get in touch if there is anything else I can do to help you with information. That goes for everybody. I am no expert, but I have been around the block, so to speak, with NF so if any of my experiences or knowledge on the subject can benefit others, I am happy to try to help.

(((HUGS)))

Tahnee