hypersomnia

[PowPow]

In checking out pandasnetwork this morning, I saw this case study

PANDAS and KLS

 

After reading more about this syndrome, I KNOW my daughter had this. She had 2 periods of many weeks (over a month or nearly 2) where she had all the related symptoms (minus the hypersexuality- thank goodness:) These periods were a year apart and the first episode was about 18 months post PANDAS onset.

 

Another PANDAS parent/activist who helped me get into a PANDAS doc a few years ago knew my daughter's symptoms mentioned to me about encephalitis lethargica (which has again become an interest of mine, thanks to another PANDAS parent:)

Only one of my PANDAS daughters exhibited the KLS symptoms, and she of course, is the one who is not recovering as well or as quickly with top-of-the-line PANDAS tx. Our PANDAS doc knows of her hypersomnia, but other symptoms have since take precedence and it is not an issue currently.

 

She would sleep in excess of 20 hours a day and wake only to eat and go to the bathroom (and sometimes not even for that)

I am curious if anyone else has seen this in their child?

[T_Mom]

Oh, my heavens--Pow Pow, this looks like an amazing study--and I believe you are correct in that your child's symptoms fit this profile.

 

If I remember correctly, wasn't the encephalitis lethargica outbreak a result of a particular virulent strain of something ?!

[PowPow]

There is a really interesting book (read it in all your free time, T.mom:)

"Encephlitis Lethargica" by Joel Vilensky

It goes in to detail about all the potential causes and subtypes of EL. I do not think an exact cause was ever "figured out"-- though many sufferers had a preceding febrile or flu-like illness. Sounds familiar, doesn't it?

 

He has a bit about PANDAS and research by Dr Dale ( he an Australian, I think) about the two disorders. I think PANDAS, EL, Tourette's, the Leroy Girls: all different arms of the same octupus!

 

So, what to do with this information....... makes more conversation (and at least a little novelty discussion) at our next PANDAS appt. There is a KLS study center at Stanford. Maybe I will email them.

[911RN]

In checking out pandasnetwork this morning, I saw this case study

PANDAS and KLS

 

After reading more about this syndrome, I KNOW my daughter had this. She had 2 periods of many weeks (over a month or nearly 2) where she had all the related symptoms (minus the hypersexuality- thank goodness:) These periods were a year apart and the first episode was about 18 months post PANDAS onset.

 

Another PANDAS parent/activist who helped me get into a PANDAS doc a few years ago knew my daughter's symptoms mentioned to me about encephalitis lethargica (which has again become an interest of mine, thanks to another PANDAS parent:)

Only one of my PANDAS daughters exhibited the KLS symptoms, and she of course, is the one who is not recovering as well or as quickly with top-of-the-line PANDAS tx. Our PANDAS doc knows of her hypersomnia, but other symptoms have since take precedence and it is not an issue currently.

 

She would sleep in excess of 20 hours a day and wake only to eat and go to the bathroom (and sometimes not even for that)

I am curious if anyone else has seen this in their child?

 

My son has great fatigue although not hypersomnia. He has had periodic episodes of falling asleep at mid day, in the past, in school or out of school. Fall 2010 was really bad. Fall asleep sitting up or at his desk and would have to be awakened. Teachers usually let him go for about 30 minutes then woke him up. He was better afterwards. This was in conjunction with PANDAS flare following Strep. Some of this we attributed to Intuniv which we later stopped. However, he still fatigues easily and has not been on Intuniv for 7 months! He had fatigue/falling asleep before Intuniv also. He has had an overnight sleep study that was normal.

 

Docs don't have good explanation for why a 11 year old child is so fatigued. Neuro said on last visit that he just does not receive "resorative sleep" which was a bunch of BS for "I don't know." I would have had greater respect if he had just said I don't know He sleeps about 10 hours per night. He is better right now---tics have diminished for most part, OCD is minimal, still fatigues without mid day nappping....we have never had any of the hypersexuality- thankfully.

 

He complains about being "tired" all the time. Sorry, that is not a normal 11 year old boy complaint in my view. Kids are born with energy not fatigue.

[peglem]

Just recently, although she's had past periods of this as well, my daughter had frequent (6-7/day) episodes of 15-20 minutes of whimpering/crying, followed by @ 5 minutes of aggression, then just "checks out" w/ a period of 5-15 minutes where she appears to be asleep, but really isn't. Then she gets up and is back to "normal". After a few days on clindamycin, she's not doing that anymore.

[momcap]

I don't know if this is even remotely the same thing - but my DS6 sleeps non-stop whenever he gets any illness. He is the least PANDAS-y of my 3 boys, but all 3 have some symptoms of PANDAS. If he gets anything - a cold, a flu, whatever, he just shuts down and sleeps day and night. DH is the same. When DS6 was 3 he got a stomach flu and slept for about 36 hours straight, inbetween puking. I tried to wake him repeatedly to make him drink, but he couldn't stay awake long enough to drink anything. I ended up getting really worried and taking him to the E.R., it turns out just in time, because he was so badly dehydrated. He didn't even wake up when they stuck him a dozen times trying to find his dehydrated veins. He ended up on IV for 3 days!!! So scary. Now when he gets sick I pester him non-stop to wake up and drink, and threaten to bring him to the hospital if he doesn't drink. It's like trying to wake a zombie! I always knew this was abnormal. I never connected it to PANDAS in any way because my classic PANDAS ds8 is the opposite. When he's sick he goes berserk. I only wish he would sleep!

[MomWithOCDSon]

My DS complained of being tired and sleepy a lot during his exacerbations, but it was usually when he was supposed to be undertaking a task he found onerous or especially difficult, such as homework or showering. I sort of took it as another self-survival tactic his brain used, "checking out" and inducing drowsiness at the height of an anxiety-producing activity.

 

I do remember a while back, though, reading a paper on narcolepsy and apparently there was a high correlation between strep exposure/high titers and narcolepsy diagnoses. Hmmm . . . . .

[911RN]

My DS complained of being tired and sleepy a lot during his exacerbations, but it was usually when he was supposed to be undertaking a task he found onerous or especially difficult, such as homework or showering. I sort of took it as another self-survival tactic his brain used, "checking out" and inducing drowsiness at the height of an anxiety-producing activity.

 

I do remember a while back, though, reading a paper on narcolepsy and apparently there was a high correlation between strep exposure/high titers and narcolepsy diagnoses. Hmmm . . . . .

 

 

Absolutely....I have an entire computer folder full of research on the connection between Strep and narcolepsy. However, when DS11 sleep study came back I had to stop going down that rabbit hole Although, he did fall asleep during daytime portion of sleep study- the brain waves were not indicative of narcolepsy which I guess are different than other sleep waves. I'm not sleep study expert- have alpha,beta, delta and some other type waves. One is more indicative of narcolepsy- don't remember, now, which one- but whatever IT is- he didn't have it so I stopped researching narcolepsy and went back to just PANDAS and ACN forum!