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Mom Of Child With N, Looking For Other Parents To Talk With.


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#1 ravanzee

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Posted 23 May 2013 - 10:59 AM

Hi All,

 

My son was recently diagnosed with Narcolepsy at the age of 6.  It has been a quick diagnosis and none of us have really accepted what is going on yet.  There are no local support groups near me and I have checked on facebook for active groups for support.  It would be great to talk with some other parents about your experiences and how you have helped your children understand. 

 

~Amber



#2 Pseudosleeper

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Posted 29 July 2013 - 10:52 PM

Wow. I'm so sorry you haven't found any support here. I have a son that age, but I am the one with N. I wish you all the best. Wish I could help!

#3 Helpmyson

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Posted 07 August 2013 - 06:53 PM

Hi there! My son is 10 and was just diagnosed with N. I'd love to chat with you! Maybe we can share experiences as to what led us here.....



#4 Countrygirl9311

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Posted 28 August 2013 - 02:40 AM

Husband was around 13 when he got his diagnosis and I thought that was young

#5 Kingsworthy

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Posted 07 September 2013 - 11:42 AM

My son is 15, he got his diagnosis on 26th August 2013. Looking back on it, we can see that he had a much milder form of this, since he was five. On his 15th Birthday he suddenly got so much worse, apparently it is the hormones.  Narcalepsy is a difficult diagnosis, but than anything that affects your child is difficult. We felt such great relief when we found out, not that we wanted him to have it, but we have been living in limbo, and now we can see a way forward. Sam can feel he is not going nuts. People say you should not label kids, I think we should not limit our kids.  My son is hoping to meet other kids out there, who have this. We are in Arizona.

Kingsworthy



#6 Countrygirl9311

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Posted 28 September 2013 - 12:40 AM

I think it's important to meet other people with it Brys has never met anyone with it and I think he would like to. We live in Texas so there's like no chance of a meeting here the ones I see are all up north :( but I'd like for us to go to one at least once I'm not sure how much he knows about N