Re: Neurofibromatosis??

Posted by Lori K on February 14, 2003 at 09:16:02:

In Reply to: Neurofibromatosis?? posted by Shana on February 14, 2003 at 08:39:35:

OMG I know exactly how you are feeling right now. I was where you are now about 7 years ago. My now 13 year old developed large birth marks at about 6 months old. Our doctor dismissed it saying they were only birthmarks. It didn't matter how much I argued that birth marks show up at birth not 6 months later and keep coming throughout life. One covered half of his upper torso. He developed 3 tumors in his armpits by the time he was in grade 1. Again they were dismissed. We changed doctors and were referred to a specialist in Toronto. He thought Neurofibromatosis right away. I was scared to death. All I could think about was how I was going to lose my son before he even had a chance to become a man.

Biopsies were taken of the tumors under his arms and about 2 weeks later the results came back saying it was Mastocytosis. It is almost the same as Neurofibromatosis but with a little more hope. They told me if he didn't develop any more tumors and seemed ok by the time he was a teen it would go away in his early 20's. The spots are still there and now (he is 13) he has severe chest pains roughly every other day that feel like someone is crushing him. We have moved and haven't a reliable doctor. We will be moving again soon to a bigger city centre so he has proper treatment. I am terrified he has a tumor in his chest. If he does, it means that I am going to stand a huge chance of losing my son.

I realize I am not really offering you any comfort here. There really isn't a whole lot you can do until you know for sure outside of educate yourself the best you can and join support groups. I just want you to know you are not alone. If you ever want to talk my email is tager@sympatico.ca

Here are a couple of places to research. The first one is excellent. They will even mail you out an information package.

http://www.bcnf.bc.ca/

http://www.aafp.org/afp/990600ap/3047.html

There are more but I need to do a search to find them. There is also an excellent support group in the newsgroups.

alt.support.disorders.neurological

Sorry this is so long. Take care and keep us posted.

Lori K

Follow Ups:

• Another good link Lori K 09:23:00 2/14/03 (0)

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