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Wondering if this means anything?


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This is real different and of course always wonder. So ds is 10 now. He has taken naps or I should say fallen asleep three times in the past couple of weeks. Which never happens! First time was a rainy day and all of us cuddled on couch and ds and dd passed out. Second time ds was arguing with me basically about something I don't want to talk about for the hundred time and he layed on the couch b/c I had enough and he passed out. Really??? Then a couple of days ago he was sent to his room for hitting his sister and 45 min later he is asleep. Now also in the last 2 weeks ds has went to use the washroom at midnight and falls asleep on the toilet??? This is the third time he has fallen asleep on the toilet in the last couple of weeks. I will walk in and he is sleeping and j will wake him up and he stares at me like I am crazy. I tell him to get up and get to bed and he stares at me being he is dazed but gets up and goes to bed. Is it his age and hormones or what the heck? Very different on his part.

Mar

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Mar --

 

I don't recall if strep is your DS's PANDAS/PANS trigger or not, but they have found a link between narcolepsy and strep (see the link below). Especially in its early stages, narcolepsy is described as an intense, inescapable urge to sleep and atypical daytime sleepiness; the whole "slump down into slumber at the blink of an eye" thing, or cataplexy, is typically a more advanced form of the condition.

 

Strep and Narcolepsy

 

Maybe there's some link here? :huh:

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I have lots of research on the connection between Strep and narcolepsy if you are interested. My son went through similar type behavior with frequent fatigue and sleeping in the middle of the day at school in 2010-2011 but never reached to the level you describe. Went through overnight/all day sleep study and DID NOT have narcolepsy. I ended up taking him off Intuniv and he got better- I believe it was directly related to effects of this medication although he had been on it a year.

 

Not sure what your child's medication profile consists of? Sleep studies are expensive but worth it to rule out Narcolepsy...if not that then you can start looking for other causes.Doubt it is hormones....not to the severity you describe. One thing for pre teens/teenagers to sleep late, another thing all together to fall asleep at the blink of an eye or on the toilet!!!

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I ended up taking him off Intuniv and he got better- I believe it was directly related to effects of this medication although he had been on it a year.

 

 

FWIW, we had a similar response when DS was put on Intuniv, especially in the beginning. It's known to lower blood pressure, so maybe that's a piece of it? We fought back with lots of small, healthy snacks in the mid-afternoon, and that seemed to help. Especially as, over time, his body adjusted. Still, the Intuniv didn't really seem to have much impact on DS's attention-oriented (or lack thereof, I should say <_< ) behaviors, so we dropped it, too.

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I has just read something about this a few weeks ago. I am sure there is much more info out there but here is something I quickly came across

 

http://www.who.int/vaccine_safety/topics/influenza/pandemic/h1n1_safety_assessing/narcolepsy_statement/en/

 

My son actually got the H1N1 virus when it made the rounds heavily that one year around the same time as increased fatigue ....natural immunity, no vaccine. My older son got it, as well. There was vaccine shortage and by the time it got to our area available for the public- it was already a done deal through most of our community. Particularly, the children. I did receive vaccine as a health care worker but my kids did not. Not sure if actually getting the illness could cause same effect? Or, added to the effects of the Intuniv?

 

Either way, we never appreciated enough improvement on att'n and focusing either to continue with Intuniv. He was better off without it. The fatigue impact was not worth any gains. Did well initially but the longer he was on it- effects waned. As we went up to 3mg it was a disaster with the falling asleep mid day. I gave it a year and then dropped it. it was not a good fit for a long term solution.

 

Interestingly, the manufacturer does not even recommend Intuniv for longer than 9-12 weeks (check the website)...it has not been FDA approved or trialed longer than that. Which, I think is just plain dumb...what kid is only going to need an ADD med for 9-12 weeks? Duh? It's a long term thing not a situational issue.

 

Anyway, I digress, interesting about H1N1 and narcolepsy.

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Thanks for all the replys but it has gotten better. No sleeping on toilet since I last wrote. No sleeping during the day . Ds has had episodes of sleep walking when he was younger so I am assuming this is what it was. When I mentioned this to him he was shocked. But I recall when he was three and I hear him going to the bathroom and crash he falls over. This happened once or twice. He is a deep sleeper and his dad crashes in sleep. I was hoping it was a faze and I think it is I hope. He is back to the 7am wake up and ready to go. I really think in his case it's being overtired.

Mar

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  • 1 month later...

Okay so I am wondering. Ds has done this at least 7 times since I last posted! There was one time where I heard someone running to the bathroom and I just layed there and after 5 min walk in and he is pasted out. This all started after the strep. He never did this before. I now recall DH saying he used to fall asleep taking baths. His mom would come knocking at the door and he would fall asleep. He would mention this before we had kids. I would always say how can you just fall asleep? There has to be some connection. This is weird. J feel like

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I'd check for both narcolepsy and epilepsy--perhaps absence seizures? I have come across information that some epilepsy is autoimmune, which I find fascinating but haven't been able to get much information on it other than it is much less responsive to antiepileptic medications. My dd has been dx'ed with epilepsy and had a fair amount of breakthrough seizures on her AEDso I didn't fuss much when she reached a point where she strongly refused to take it. (Doctors are aghast at this, but at least she doesn't drive.) We are looking into possible PANDAS. It is pretty common to have more than one autoimmune condition--I think one could say having one autoimmune condition increases the likelihood of having another.

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