Should I test my children for HNPP?
She had recently been diagnosed and was wondering if she should have her children tested as well and how to protect them if they have it, but was it wise if knowing could harm them emotionally, worrying about it and their future.
I was one that replied mostly because it is a question I am mulling over myself. Here is my reply.
"Thank you for posting this question. This is something I am dealing with at present as well. I have five children and my oldest is nine. We learned about HNPP because my oldest who was then six lost the use of her left hand and part of her arm suddenly and instantly from doing NOTHING at all. She was simply resting on her elbows as she listened to a story and pop, her hand was paralyzed. Talk about feeling like you don't know how to protect your children. I feel this very strongly as well. It is a delicate balance that I haven't yet learned how to manage, although I think I am getting better. I am a big advocate for being open and knowing what you are dealing with. There was a whole set of cousins that knew about this disease being in the family but never shared that knowledge. I know it is very personal for some people but had we known it could have helped us a lot in diagnosing what was wrong with her. It took over a year, another injury, and several tests before she was diagnosed. I am not bitter about it, I just push for openness where it might concern or help others. That being said, I have yet to test any of my other children. Originally, I wanted to get them all tested. I felt it would be important as their mother when planning what extracarricular activities would be safer for them and hopefully teach them to be cautious with their body without them feeling like they have to live in a bubble or creating a hypochondriac.