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My DS (14), who was recently diagnosed with PANDAS/PANS (positive for cocksakie, mycoplasma & strep), cannot wake up fully in the mornings. This started on Saturday and it has become worse and worse each day. Today he is still sleeping and it is 11.15am. The therapist thinks it's biological, not behavioral or psychological. He spoke with the therapist on the phone, but was incoherent and falling asleep.

 

He was taking Augmentin, Anti-viral, Biaxin and Predisone. He took the last of the pills on the past Saturday.

 

On the plus side, his OCD and his ability to control it has grown and he seemed fine last night (went to sleep at 12).

 

He isn't angry anymore, but apologetic that he keeps falling back asleep.

 

Any ideas? Anyone experience anything like this?

 

TIA,

T.Anna

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I have no idea if this might be part of the puzzle, but there has been a link established between narcolepsy and strep. And unlike our standard "cartoon" interpretation of what narcolepsy is or looks like, in its early stages, it's commonly described as a powerful desire to sleep. The lightning fast, slump-to-the-floor kind of narcolepsy you see on YouTube, etc. is actually an advanced form of the condition known as cataplexy, where in addition to the desire to sleep, your lose muscle control.

 

Here's a link to a paper on the topic of narcolepsy and strep:

 

Narcolepsy and Strep

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Nancy,

 

Fascinating article. This is the first time I have heard of a connection between strep and narcolepsy. DD was dx'ed with epilepsy when she was 14 (positive EEG), five years before dx with Pandas. She has been off medication for some time (basically she refused to take it any more--very unpleasant drugs) but occasionally has a seizure type episode. Since Pandas dx I've been wondering if seizures are connected to Pandas.

 

T. Anna,

 

With regard to difficulty waking up, are you sure he is sleeping well through the night. We are still trying to conquer the insomnia that so often accompanies Pandas.

 

Ko's Mom

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In my daughter's case, Lyme was the cause of her severe lethargy. That symptom has gone away with treatment. She also has elevated ASO, Mycoplasma etc. Steroids can exacerbate Lyme, unknowingly taking steriods when you have Lyme seems to reactivate it. It may be something you want to explore if you have not already, for some reason a number of kids seem to have the PANS trifecta, Lyme, Strep and Mycoplasma. Other tests I would ask for would be Mono.

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In my daughter's case, Lyme was the cause of her severe lethargy. That symptom has gone away with treatment. She also has elevated ASO, Mycoplasma etc. Steroids can exacerbate Lyme, unknowingly taking steriods when you have Lyme seems to reactivate it. It may be something you want to explore if you have not already, for some reason a number of kids seem to have the PANS trifecta, Lyme, Strep and Mycoplasma. Other tests I would ask for would be Mono.

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T.Anna I don't want to complicate your life but do you have the exact results of the Lyme test? what lab did it and what if any bands were positive? Most of us that have dealt with Lyme have a view that the CDC guidelines are irrelevant, explained in extreme detail in a book called Cure Unknown by Pamela Weintraub, but an average phsycian and even many PANDAS docs do not have the experience and information to consider. So a negative test by CDC standards may not at all really mean negative. Essentialy bands 18,23, 30, 31, 34, 39, 83 and 93 are the primary bands considered relevant by most Lyme literate doctors, IGM, IGG or even Indeterminate. The other bands that the CDC counts, like 41, cross react so LLMD's don't consider them. The problem is that many labs do not report all of these bands, except for Stonybrook if you request "report all bands" and Igenex. There would be no harm in reqeusting a Stonybrook test report all bands, Stonybrook takes insurance too and is better accepted by mainstream docs. Even though antibiotics can cloud the results, it would seem worth it. Unless there is one of the bands I indicated about, and then I would consider pursuing an evaluation by a Lyme doc.

I've had Mono myself and was just unable to move, I also had tonsils that were exploding so that was another mono symptom.

 

Good luck!

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DD15 has exhibited the same symptoms, propping her head up with her hand, falling over to the side....

 

After sleeping with her, I realize that her sleep is interrupted multiple times during the night and I doubt that in the last six weeks she has had a full night's sleep. It is probably less than four hours a night that her body is relaxed.

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My son is 13 and just diagnosed with Pandas 7 weeks ago. We have been searching for answers for 5 years since this first appeared in second grade. In this latest pandas episode (since Oct.) exhaustion has been a major symptom. He started sleeping through school, next I literally could not get him up in the morning or feed him breakfast. His therapist called me into his session one day and said he had fallen asleep mid-sentence. I thought acting tired was a way of avoiding anxiety... school, etc. Now I feel this is a biological symptom of the Pandas as it seems to be one of the first symptom he exhibits as it's coming on.

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