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.
Every doctor I have discussed this with has discouraged me from having the others tested for a few reasons.
1) The insurance won't cover the blood test because it would be exploratory rather than "necessary."
2) It would be violating the rights of my children to choose for themselves if they want to know or not (this reason took me quite a while to understand and I am still not sure if I agree with it)
3) Just having them diagnosed with this disease, despite having symptoms or not, will make it harder for them to get both life and health insurance.
I still want to know, but I was advised by our pediatric neurologist to only test them if symptoms arise in the others. I guess I am waiting for this or I just still can't decide. As far as protecting my HNPP daughter: This is something that I am still working out. My husband, whom we learned has HNPP as well, is for letting her live her life and just dealing with the issues as they come. I am more cautious and want to prevent as much damage as possible but still don't want her to miss out on being a "regular" kid. Because she has had some serious issues with it at such a young age the neurologist feels she has a severe case; this pushes me even more toward caution. I look at it like we need to preserve her function for as long as possible by preventing any injury we can for as long as we can. I basically encourage her to be an underachiever as far as physical activity. We have to watch out for pressure, repetition, and stretching (basically everything), so I tell her if it pulls: stop doing it, if it hurts: don't do it, change your position a lot and don't rest on anything, and don't be aggressive (her second injury was from playing boxing on the wii). Hopefully overtime she will learn her limitations and we are just cautious. She recently started taking violin and her teacher stressed position, position, position. She can't hold the violin that way safely or her wrist. It was at this point that I explained her disease to her teacher. We didn't take her out of violin and she is able to play, she just plays it like a cello. I try to help her do all that she wants to do but sometimes we need to do it differently. She understands she can never push herself to become an athlete, but I still let her participate in sports but it is only for fun and exercise rather than to achieve. I may be wrong but this is where we are right now. I am anxious to hear the advise others in the group have to offer us as well.
- Jerusha
