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Kids and NF2

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I was a child like 6 or 7 when i started showing symptoms. We had no idea it was nf2. Or anything for that matter. My heart would pound and thump in my chest. My mom took me to the dr they did all kinds of electrocardiograms x rays etc found nothing so I was labled an attention getter. My mom knew better by 14 I was having stiff necks and chest pain tired all the time but the neck pain would disapear. At 14 my grandmother suggested my mom take me to childrens in Pittsburgh. They found it all right off the bat and were furios the hospitals here were so STUPID they couldn't see the tumors on xray at age 10 behind my heart.

Ok anyhow why I am writing I beleive as long as a child has no symptoms maybe its better to let them have a good childhood. Mine was ok but I missed alot of school and was talked about alot for it. I was a BAD child even though I really wasn't. I don't know some drs say get them while they are small before they do damage but surgery most often does damage anyhow. The rest say let them go cause they may never grow...... A good DR gives you both views and lets you decide on your own. My surgeries by fate were all emergency well except for my left audia nerve tumor. Bles you all who have to decide for your children I have no children yet and one day may have to myself. Might end up changing my mind before then who knows.

:) Sara

in WV

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