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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

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Pixie is 9 and sleeps 11 hours/night and sometimes more. She is still fatigued. The Nutritional Response Therapist we are seeing thinks it is because she is in fight or flight all the time (or "switched") which can be typical of Lyme too.

 

Autoimmune things run in my family (my mother has Lupus and no one can agree on what my problem is!) and we both slept days and nights away as teenagers. We also both had a VERY hard time with mono as teenagers too. I don't know how it all relates, but there are some pieces of the puzzle that are common and then not enough pieces to quite make a picture, you know? I think something about the hormones of being a teen and the additional stress of school, peers, etc. probably wears you out to fatigue more easily anyway, but not saying that PANDAS, etc doesn't also fit into it.

 

Hugs,

Manda

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YES!

 

My two kids, both pandas, really seem to need 12 hrs of sleep.

 

The young one, always enjoyed her sleep. But the older one has always been an early riser (it didn't depend on what time she went to bed) and now she regularly sleeps until 9.

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[DD17 Pandas sleeps more when her symptoms are worse. She remarked how tired she gets when her OCD is bad. She is in bed by 7pm, asleep soon after and I have to wake her at 6:30 in the morning. When her OCD was better on steroids, her sleep needs much less. My 20yo with adolescent onset also had fatigue as a big symptom. Energy much better with 2 months antibiotics (even exercising again). My take is that the emotional issues take a lot out of these kids. All the repeating is exausting.

 

Ellie

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My 9 y/o son also sleeps a lot ( bed at 8 and wake at 10-noon) , he would fall asleep during school also on school days and come home and take a nap. Had him into sleep doctor and she said this is very common for tourette syndrome. She thought maybe with the relation of the tics and pandas this was also causing sleep issues. Although he does take clonidine ( only at night, not in am) but this has never really affected HOW much he sleeps but when he falls asleep- just made it so he isn't staying up till 1 am and sleeping till 3 in afternooon. The sleep clinic is continuing to follow him but they can't quite put their finger on it, I think he is just mentally and physically exhausted and prob depressed some.

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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

 

How much sleep my ds16 requires is a pretty good barometer of where he is in a PANDAS backslide. 10 wks ago he was sleeping a consistent 12-14 hours per day (all at one time, no naps). Now we are consistently at 10-11 hours. Today was 8. I agree with the fight or flight reference. You can't possibly be in fight or flight most of the day and not be exhausted. Our bodies were not built for that and it's going to take a huge toll. I personally believe that it also accounts for some of his weight loss. His eating wasn't disrupted long enough to account for 20+lbs in 4 wks. I believe he's burning calories in fight or flight, too but I don't know if there is any science to back that up.

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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

 

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia :). You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms.

 

Lyme Mom

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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

 

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia B). You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms.

 

Lyme Mom

 

 

I just got the labs on Friday afternoon. The first lyme antibodies test was 'positive presumptive". Then it says the confirmatory EIA test was negative. They cancelled the Western Blot. Now which result am I supposed to believe?? So confused!

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Since your ds was positive on the ELISA, you should consider getting an evaluation by an LLMD (Lyme-literate doc) or, at the very least, consider getting the WB done through a specialty lab such as IgeneX or Clongen. You can order the western blot test kit yourself. You just need a doctor to sign the order and do the blood draw (or give you the necessary paperwork for the blood draw through another lab). We are now seeing a DAN doctor who has been very cooperative with any tests I have wanted to run for my ds. If your current doc will not cooperate, I'd find one who will. I definitely think Lyme is an avenue you should explore further.

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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

 

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia B). You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms.

 

Lyme Mom

 

 

I just got the labs on Friday afternoon. The first lyme antibodies test was 'positive presumptive". Then it says the confirmatory EIA test was negative. They cancelled the Western Blot. Now which result am I supposed to believe?? So confused!

 

Given his symptoms you really need a doctor who will put him on lyme antibiotics while you get a good lyme test done. I would not take no for an answer. If this is lyme you do not want to wait another month. You need to know which antibody bands your son tested positive for and only a western blot will tell you this. I'd just insist on antibiotics while you wait for an igenex test to be run. If your doctor won't do this you need to find another doctor. The consequences of not treating lyme are extremely serious. It sounds like he is already pretty sick. Keep in mind that about 40% of the lyme patients who the top lyme pediatrician in world, Dr. Jones, has treated for lyme had negative ELISA tests for lyme. If your son actually got a positive result the chances are very good that he has lyme (given his symptoms). The sooner you treat lyme the better the results. The longer you have it the harder it is to get rid of and the more drastic steps you have to take to get better (like long term antibiotics and/or a picc line). If you want to PM feel free to.

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Fatigue was one of the symptoms we saw (other than the child suddently possessed) that led us to look for a diagnosis. Our son (2) was sleeping 15-16 hours a day including naps, and would wake up with bags under his eyes and was always tired and cranky. Tire and cranky doesn't make most 2 year olds very happy, let alone one in a PANDAS exacerbation!

 

He's been on abx for 2+ months and that's getting better, although on "bad" days, he always does seem a little more tired.

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