Wednesday, July 25, 2012

Should I Test My Children?

On one of the online HNPP support groups I am part of, one member asked us this question:
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       

1 comment:

  1. HNPP
    Hi , every one: i would like to share my strange story , and please give me some advise. today Sept 29 /2012 is the first time that a read about HNPP when i find a test requisition form from the year 2003 that i was supposed to do it but i did not because was a little bit hard to me in order that i had to collect my blood in 2 bottles in a hospital and then send it to another state in usa different than the state that i was living because of that i was lazy to do it and also because i ask so many doctors about my symptoms but no one told me about that disease, even i remember that i show this test to my doctor who make me the carpal tunnel surgery and he never heard of that disease , i used to have carpal tunnel syndrome and i did the surgery but did not get better only i little bit , i did not search for this symptoms because i was beveling that there is no disease with that symptoms that is only me have it because i am a little bit fat or because i used to have carpal tunnel syndrome or because i have a little back pain , so i was associate those rare symptoms ( numbness , weakness , i cant lean on mostly any thing , i cant stay in one position more than 2 or 3 minutes sleeping or siting , pressure if i put my hands especially over the table or in the car window while i am driving , in conclusion i have to move my body every minute .) But today i Google it and i was surprise that i finally find whats wrong with me ,what i have to do the test to make sure that i have it , but i am almost sure to carried it because i unfortunate i have all the syndromes. also i want to share some syndthromes that i did not find it yet : * a lot of times during the day and night i fell like electric shocks in my body *in order to minimize the pain , i have to stay in a stray position so the blood don't stop and began numbness . * muscles and bones pain But i believe the GOOD think about not knowing for this diseases till now is that i find that the best think to reduce the symptoms is matter of time , there is no sure cure for that and the most important that now i have 2 kids and the third is coming very soon , but if i knew it maybe i did not have kids afraid to pass this genetic disease to my children , any way i pray GOD to not have my boys this disease . YOUR BLOG was very helpful for me , thank you very much for all your very VALUE information and hopefully find cure for that and GOD BLESS your family and cure all the disease. I am sorry if i take to long but is very important for me to have some answers and tips for my problem , please give me some advise

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