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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

#7 carrieannburns

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Posted 17 April 2014 - 07:28 AM

For those who are looking for more support for their children, and better understanding and knowledge should check out some of these groups, whichever apply to you and your children / child;
 

*Groups I Find Priority (Most Helpful)*: 

 

 
 

For Children or Parents Of Children Who Suffer From Narcolepsy Groups:

  1. Narcolepsy Kids And Parents Support Group:https://www.facebook...KidsandParents/
  2. Narcolepsy Support For Parents With Children With Narcolepsy:https://www.facebook...41689819204688/
  3. Children With Narcolepsy: https://www.facebook...61993243839808/
  4. Children With Narcolepsy And Cataplexy: https://www.facebook...41243762670009/
  5. Children With Narcolepsy And Cataplexy:https://www.facebook...41962319265658/
  6. Children With Narcolepsy And Cataplexy: https://www.facebook...27895897312441/
  7. Parents Of Children With Narcolepsy 16 Years Or Younger:https://www.facebook...4849/?ref=br_rs

 

 

For Young People With Narcolepsy:

  1. Narcolepsy Youth: https://www.facebook...97366243659141/
  2. Young Adults With Narcolepsy: https://www.facebook.com/groups/YAWNs/
  3. (NAPS) Narcolepsy Awareness & Peer Support: https://www.facebook...ups/NAPS.group/
  4. Young People With Narcolepsy:https://www.facebook...ungPeopleWithN/

 

 

For Students With Narcolepsy:

 

Students With Narcolepsy: https://www.facebook...65929143438477/

 
 

Family Narcolepsy Related:

 

Family Members Of People With Narcolepsy: https://www.facebook...lymembersofPWN/

 

Families With Narcolepsy: https://www.facebook...s/363274095667/

 

Married To A Narcoleptic: https://www.facebook...80663662022594/

 

Narcolepsy Network Family Members Support: https://www.facebook...4564/?ref=br_rs

 

Spouses With Narcolepsy: https://www.facebook...5061/?ref=br_rs

 

NAPS (Narcolepsy Awareness and Parenting Support):https://www.facebook...6220/?ref=br_rs

 

 

 

 

For Women/Females With Narcolepsy:

 

Sleeping Beauty (Women With Narcolepsy):https://www.facebook...90034154391843/

 

 
 

Family Narcolepsy Related:

 

Family Members Of People With Narcolepsy: https://www.facebook...lymembersofPWN/

 

Families With Narcolepsy: https://www.facebook...s/363274095667/

 

Married To A Narcoleptic: https://www.facebook...80663662022594/

 

Narcolepsy Network Family Members Support: https://www.facebook...4564/?ref=br_rs

 

Spouses With Narcolepsy: https://www.facebook...5061/?ref=br_rs

 

NAPS (Narcolepsy Awareness and Parenting Support):https://www.facebook...6220/?ref=br_rs

 

 

 

 

For Women/Females With Narcolepsy:

 

Sleeping Beauty (Women With Narcolepsy):https://www.facebook...90034154391843/

 

 

Art:

 

N[Art] (Narcolepsy Art): https://www.facebook.../narcolepsyart/ 

 

Narcolepsy Gamers: https://www.facebook...y.Gamers.Group/

 

People With Narcolepsy Pen Pals: https://www.facebook...colepsyPenPals/

 

 

 

 

I definitely HIGHLY suggest the People With Narcolepsy Pen Pals group for anyone who is looking to connect their children with other children close to their age they can send art they do or create back to eachother till they are old enough to write letters, or send postcards!! :) and the parents of the children can also write eachother... We have different ways we go about this, we ask if they would prefer to be pared (parent to parent whether both have Narcolepsy and their children do not, or one has Narcolepsy and the other does not, or both don't have Narcolepsy and their children do). That way they can learn from eachother ect, give advice and support, and the children the same thing mix it up whether both are affected by N, or only one is and the other's parent is they can share advice and just connect. It is a great way for more person-to-person personal support and you can make friends world wide!! I highly suggest that the parent stays involved in their childs connections through the group (although so far so good and everything is safe) but it is always smart to have control of communication with strangers.

 

If you would like to know more information about the group you can read about it on Julie Flygare's website!!

 

http://julieflygare.com/people-narcolepsy-pen-pals/

 

We have over 700 users, and many children and parents with N and without on there xo you are able to pick who / what type of person you would like to contact.