How do you spot N?

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This topic contains 13 replies, has 7 voices, and was last updated by IDreamofNapping 1 month, 3 weeks ago. This post has been viewed 524 times

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  • #1276

    Wonderfulworld
    Participant @wonderfulworld

    To me it started when I was 12 and my family simply accused me of being lazy.

    I wonder how you see in children if they have narcolepsy? I probably have a bigger chance of seeing it than my own parents had since none of them suffer from N. How early can it begin? My children are now almost 5 years, almost 3 years and 2 months old. What signs would they show?

    I’m asking because one of them is actually acting a bit like there is something but maybe it’s just her age, I don’t know…

    #1277
    TheRabbitKing
    TheRabbitKing
    Keymaster @deathrabbit

    It can manifest before puberty, but it’s incredibly rare to get childhood narcolepsy. Usual onset is late teens to mid 20s. Starting at 12, yours might technically be considered a case of childhood narcolepsy; I’m not sure when the cutoff is. As far as signs, I’d look for cataplexy or in the case of Type 2 N, I think brain fog and cognitive impairment are very common complaints. And of course, it goes without saying to look for sleepiness. You could always get them gene tested, but that’s pretty expensive, and if they did have the gene, it wouldn’t guarantee they had N, in fact the vast majority who have the gene do not have N. I believe the current thinking is that N requires both genetic propensity and some sort of trigger, like a viral infection.

    My current jam: Anathema - Springfield

    #1285

    Wonderfulworld
    Participant @wonderfulworld

    I’m not sure about cataplexy but she gets tired all of a sudden – so tired that she cries if she can’t go to bed strait away. She was done taking naps many months ago but now she takes a nap every day. Sometimes she starts talking about wanting a nap and complain about being tired only a few hours after she gets up in the morning. I guess it can be many things making her more tired these days. She is going to be 3 very soon but it is still very early, I know.

    #1314

    Natdoc
    Participant @natdoc

    Wonderfulworld
    It would be rare for a 3 year old to have narcolepsy although not impossible. Children have very different manifestations than adults. It is extremely difficult for a child to describe symptoms at such a young age. You have described one of the primary symptoms though which is when a child resumes previously stopped naps. Other symptoms may include behaviour issues, difficulty paying attention, nightmares or “scary dreams” not wanting to go to sleep because of the dreams. They may seem hyperactive at one moment and extremely sleepy the next.
    How does she sleep throughout the night? is she restless?, dreams?, frequent awakenings etc.
    I would suggest seeking the opinion of a pediatric neurologist with training in sleep medicine
    I wish you the best

    #1356

    Wonderfulworld
    Participant @wonderfulworld

    Natdoc, thanks for your reply.

    She does not talk about nightmares but she used to be easy to tuck in and now she comes out of bed again constantly – every time with a new excuse for not going to bed yet. Even though she was really tired and said herself she wanted to sleep. So something sure is keeping her up and I’ll try to talk to her about it. She rarely wakes up more than once – and that’s before I even go to bed myself.

    I think I will wait and see and write down how much she sleeps and wakes up and anything else I find important and then share this with the doctor.

    #1368

    Haven
    Participant @haven

    Wonderfulworld…

    Your question is one that I have been quietly fearful of for a long time. In fact, I waited to have children until I was 30 because I was so afraid that one of my children would have to deal with N.

    I found the ages of 2 and 3 so difficult with both of my children, mostly because while they both talked nonstop, I couldn’t always understand what they wanted or were describing. My daughter went through several months of night terrors/screaming…and I was so worried that it was N…but it went away as suddenly as it began.

    Now they are 14 and 11, and very healthy for the most part. I’m sure they think it’s annoying, but our home sticks to the route of whole foods & keeping their immunity up. I figure that there’s a lot in their lives/health that I won’t be able to control, but while they live with me, I can try to get them in a good mindset with food.

    If you haven’t yet, you may also want to think about food allergies/sensitivities. (Even when children/adults have been able to previously eat foods, they can develop a serious allergy in a short amount of time. When my youngest was 3-5, he developed a serious egg allergy that brought about a host of behaviors…eventually leading to a trip to the ER. After an elimination diet and years away, he can now safely include small amounts of egg into his diet.)

    Best of luck with your little girl. I think your idea of tracking sleep/wake times is a good place to start. Hopefully it’s a “just” a stage that she will come through. (I used to dislike it when people would say that! Nothing seems like “just” anything when your child is living it out for weeks to months at a time…)

    #3072

    Wonderfulworld
    Participant @wonderfulworld

    Haven, how did I not see you wrote?

    Well, I don’t know about allergy. Could allergy cause that? I didn’t have allergy until I was about 20 so I know it can come all of a sudden. I’m glad your son can now eat some egg again.

    I hope it’s a stage, too. Her sister who is almost 5 didn’t have anything similar but no children are the same. My husband thinks it’s because she is growing so much right now and that somehow makes her more tired.

    #3156

    Jacky
    Participant @jacky

    Hi Wonderfulworld,

    My son was 8 years old when he was diagnosed – there’s no history of narcolepsy within the family.
    With him being so young – it possibly made it more obvious that it something odd was going on – during the daytime, if he stopped being ‘active’ just for a couple of minutes then he would be asleep. One time we were out shopping, we stopped in the mall to work out where we were going to next and he just sat on the floor and fell asleep. In the Dr’s appointment, it was 5pm and he was lively and chatty whilst the Paed spoke with him, then when he started speaking with me, my son was looking out of the window, but was then asleep within 2 minutes. Being young it seemed he no ability/skill/motivation to think about staying awake. His muscles would also twitch as soon as he fell asleep – especially his arms and legs.
    On non-narcolepsy sleep – my son with narc is my youngest of 4 – bedtime routines with each of them was subtly different. They say that at around 2 years of age children begin to develop imagination and greater assertiveness – hence some children may resist bedtime, may have nightmares – as their brain develops. My child number 3 was sooo inventive with delaying techniques to avoid going to bed – an absolute master!
    Yawning (stretching) is good to do with them before bedtime – it’s a brain state changer – yawn (fake yawning works too) 3 times as this helps calm the mind and prep it for sleep!
    Meditation type story books, or even reading the same story each night again helps with prompting the brain with it being time for sleep.
    My kids are now 13, 15, 16 and 18 – when my eldest was about a year another mum gave me a beautiful piece of advice – she said – children go through phases – some phases last a week, others a month, some a year or 2, some maybe 20 years – but they’re all a phase! Obviously – it must have resonated – and she was right!
    Hope that helps.

    #3253

    Wonderfulworld
    Participant @wonderfulworld

    Jacky, thanks for your reply.

    It’s not like she falls asleep everywhere she just gets very tired and wants to go take a nap – and then she doesn’t anyway and then she does want to – and then not again.
    The part that mostly has me concerned is that I’ve noticed this: She cries when she is tired but she is also tired when she cries. I mean if she gets upset or sad about something she will start crying and then she says (screams) that she’s tired and rubs her eyes. Even if she was running around before she got upset. I just want to know if it’s normal for a 3-year-old to react that way?

    An example with my 3-year-old: Chasing her older sister, having fun. She gets a shock when she falls. She sits down and starts crying. I comfort her. “I’m tired!” she says and rubs her eyes. “Do you want to go to bed?” “Yes” she says. I tell her to come with me but she keeps sitting there. “No, I’m tired!” then mumbles something and it gets harder for me to understand her. I ask her “What?” and she will scream “I’m tired!” and then start crying again. I carry her into bed and she closes her eyes. She either sleeps or after a couple of minutes comes out of her room again. Either she continues being tired and goes to bed several times or she is all of a sudden not tired anymore, puts on a big smile and starts chasing her sister again.

    Is that a normal phase or something?

    #3255

    Wonderfulworld
    Participant @wonderfulworld

    And by the way thank you for the tips. 🙂

    #3260

    Jacky
    Participant @jacky

    Hi Wonderfulworld – kids are soooooo tricky – it may be a Narc problem, it may be a 3yr old problem – it’s perfectly normal for 3yr olds to react in the weirdest ways.
    Children don’t make sense of things in the same way that we do – It could be that the shock/confusion is currently so confusing for her, that her coping strategy gives her the opportunity to recover from the shock/confusion. The coping strategy may be unpleasant for everyone around her, but it passes – and then she’s off smiling and having fun again.
    Does she still have regular naps during the daytime? It’s trickier with younger siblings as they want to keep up with the older ones – but being 3 is very tiring!! I tried to keep daytime naps with mine for as long as I could – either before or after lunch – depending on their energy. And if they didn’t want to sleep, they would lie on their bed and look at books – often falling asleep!

    #3312

    Wonderfulworld
    Participant @wonderfulworld

    Yes it is very tricky with such a little one.

    She used to take naps after lunch every day when she had just turned 2. It became harder for me to tuck her in and she didn’t want to sleep during daytime anymore even though she still seemed tired in the afternoon. She still had the choice to go to bed but she would usually just sit quietly with a book or with our cat. After a few months (about 2 ½ years old) she would no longer be tired during the day even without naps. She slept about 12 hours at night and that seemed to be enough. 3 months later out of the blue she started taking naps again and then all of the strange behavior began. Being tired out of nowhere and then not anymore. It’s okay for me that she takes naps again but all the other stuff is weird. But I guess 3 is a funny age.

    #9151
    WV_narcoleptic
    WV_narcoleptic
    Participant @wv_narcoleptic

    My narcolepsy manifested around age 12. A lot of narcoleptic kids, me included, get diagnosed ADHD. I had a drop in grades, insomnia (a lot of people don’t understand this is a manifestation of Narcolepsy for many), decrease in energy, lack of paying attention, I stopped laughing.
    I think symptoms usually begin in preteen with increasing severity into the teens and full blown early 20s.

    #9160

    IDreamofNapping
    Participant @idreamofnapping

    I have inattentive-type ADHD, not diagnosed until I was nearly 30. I definitely suffered from it my whole life — procrastination, inability to start homework or term papers or projects. Unable to clean my room. Unable to open a textbook to study before a test. Left everything till the last minute, dreading it the whole time. And starting was always agony, although once I started, it wasn’t *that* bad and sometimes was surprisingly easy. I’m still that way; haven’t learned that the built-up dread is the worst part!

    But I don’t think I had excessive daytime sleepiness (EDS) until college, at least. In middle and high school, I remember that I’d always feel a just little sleepy after lunch and in my afternoon classes, but I was still able to pay attention (ironically, “attention” was never a problem for me, just “activation”) and made it through the day without a nap. I started napping in college between classes and work, because I could! Then I graduated and got a full-time job and was awake and alert all day, except for that post-lunch drowsiness.
    So, for me, the ADHD was lifelong, while the narcolepsy with its EDS gradually built up in my 20’s and 30’s.

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