Cafe au lait spots & Neurofibromatosis

[missy->Plus4!]

X-post from MAL. Thought I'd post here too with all of you smart mommas!
Anyone have any experience with neurofibromatosis?
Our ped said today there is a good chance K has it.... signs include many cafe-au-lait spots, particularly in the folds of the skin, like underarms, groin. Also these little fatty tumors, can't remember what they are called.
There's several other signs. She has the spots all over, plus several teeny tiny "bumps". DH has the bumps too and just had one removed actually from over his eye. It's hereditary.
We will be going to a geneticist and opthamologist (tumors can develop in the eye).
Will keep you updated! Thanks in advance.
Missy

[monicag]

Welcome...I don't know anything about that but I do know when we take Jesse to the doc... and he's been to lots of them...they always ask if he has any birthmarks.
You will find only kindness and support on this board nomatter what you are walking through at the time and I just have to say it is an awsome bunch of special ladies with special kids. Please keep posting and I want to learn more about neurofibromatosis.

[Myra]

Hey Missy

Long time no speak. My dh has Neurofibromatosis (also known as NF-1). It is hereditary and dh managed to pass it on to two out of the three kids. There is a 50% chance of passing it on to your kids. Becky and John were just diagnosed about a year ago. They both have tons of cafe lait spots but no other symptoms. Dh has had four tumors removed. 50% of kids with NF have learning disabilities. John has Autism and Becky has ADD. I'm not sure if they are related or not. We go to the Neurologist for a yearly check and MRI and also the pediatric ophthalmologist. Becky has glasses for Amblyopia and so far John's eyes look fine.

Has your dh been diagnosed officially? Our Neuro said that for the kids to be diagnosed all they needed were 5 CAL's over 10mm in size and a close relative with a positive diagnosis.

There are some great message boards over at www.ctf.org/ that I visit occasionally. Feel free to pm me know if you have any other questions. I don't check in here as often as I used to.