neurofibromatosis (non-bpi)

[Connie&Andrew]

My 4 year old daughter (not my bpi child) has just been diagnosed with neurofibromatosis. It is a genetic disorder, of which there is no cure. We are just beginning our search for information and I was just wondering if anyone here has any experiences or information that they would be willing to share. It's so hard to come to grips with another condition that will affect the life of one of our children.

Thanks for all of your support.
Feel free to email me if you prefer.

Connie

[F-Litz]

Connie, this is one of the disorders that Dr. Nath works with. There was a young man who was planning on being a doctor and he was at the point where he couldn't walk because a tumor was impinging on a nerve in his calf. Dr. Nath removed it and basically spared his leg. I haven't seen Dr. Nath's NF site in a while but if you see a picture there of a huge tumor in someone's leg -it was this young man's picture. We kept in touch for about a year or, he ended up working with Dr. Nath before he moved on to med school. He was really a nice guy.

I'm sorry that your little one just got this diagnosis. I will pray for the best for her.

Big hugs,
francine

[katep]

Francine,

With all due respect, this is a disorder that a large number of doctors on this persons' insurance plan also likely work with, but for a lot less money.

Aside from that, a team approach is critical for a condition like this! Tumors can potentially form in any part of the body - skeleton, nerves, brain, etc. A reconstructive nerve surgeon (such as Dr. Nath) would be only one part of the team, which should also include geneticists, cranial surgeons, orthopedic surgeons etc etc. Most importantly, a surgeon not even on staff at a hospital is most definitely NOT the person who should be in charge of a NF child's care.

Kate

Message was edited by: katep

[claudia]

Connie:
I can't offer you medical info... only support. I know this is a difficult time, and we are all always here to support you, be your sounding boards, and let you vent.

Good luck and please let us know how you are doing.

claudia

[Connie&Andrew]

Just thought I'd give a little more information. So far she does not have any really severe problems. We have an appointment with a geneticist and hopefully they will be able to let us know a little more about what type she has and what we need to be concerned about.

Thanks for your all of your support.

Connie

[F-Litz]

Yes Kate, I know that it's a team effort. I don't know if Connie's other child is a patient of Dr. Nath alrelady or not so if she already went there, she could use him as a physician or one of her opinions or just ask him questions or NEVER CONTACT HIM AT ALL.

Connie, I will pray for your litle one and hope that you find a good team - no matter who it is - to help her throughout her journey.
-francine

[Kath]

Connie
You and your family are in my thoughts and prayers.
We are here for you as you go through this difficult time.
Kath robpi/adult

[Connie&Andrew]

Thank you all for your support.

Any information or experiences are so helpful. That is the one thing I like about this board. We can take many different people's point of view or experiences and then we can sift through them all and take what we feel is useful for us and our families.

We can't get in to the geneticist until the end of November so right now we're kind of in a waiting period to find out exactly what we are dealing with.

Thanks again for all of your support.

Connie