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Found 6 results
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Does anyone have any insight or experience with a strep-positive PANDAS kid getting frequent nose bleeds? It only happens at night while she's asleep. I have her using a nasal spray and a humidifier, but so far I can't tell if those two things are helping. Her neurologist has no advice except to try a humidifier and take her to an ENT if that doesn't work (I assume the ENT won't know anything about PANDAS). If strep can live in the nose, could that cause nose bleeds? One of her motor tics is to forcefully blow air out of her nose...could that be her body trying to expel what it perceives to be a bacterial threat?
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Really hoping someone has some advice. My son (7) is in a flare and he's been waking up two hours or more each night- plus additional waking. Last night he was up for four hours. I'm a single mom and so this all falls on me. I can't function at work or at home. Feeling desperate. Sleep has always been an issue but this time it's without the anxiety of past flares (so that's a relief). But, he literally just lies in bed twitching. His legs move almost constantly. In the past we've tried melatonin, Benadryl, lavender foot rubs, chamomile/melatonin blend. We currently do epsom salt baths, magnesium, a guided meditation- and nothing is helping. I don't think I can continue this way. Any advice?
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My son is 5 yrs old and 50 lbs and we've been unable to find any prescription that effectively allows him to fall asleep and/or sleep through the night. His anxiety seems to spike as bedtime approaches. We've tried ambien, doxepin, melatonin, clonazepam, clonidine, etc, but we've been wildly unsuccessful in finding the answer. We've also driven him around in the car for up to 2 hrs in an effort to get him down but nothing is working at this point. And when we do finally get him to sleep, he usually wakes up 4-5 hours later and then is up & down through morning. It seems as if he simply cannot turn his mind off at night. Does anyone have any suggestions for something that has worked well in helping young children with extremely high anxiety sleep? Thank you in advance.
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Great eight-minute video of Dr. Stephanie Seneff of MIT discussing the connections between autism, vaccines, GMO's, pestisides, glutamate, sleep disorders, Tylenol, brain swelling, blood/brain barrier, etc. Very relevant to PANDAS/PANS as well. https://www.youtube.com/watch?v=o3P6wVUH0pc&feature=youtu.be
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Our dd age 5 1/2 is two weeks post ivig. We have not been one of the people who saw an immediate improvement. In fact, we saw a big flare in PANS symptoms about 2-3 days post ivig. I'm glad that we we had heard from other parents ( not doctors) that this could happen. Based on how bad the flare was, I was terrified, but she recovered very very quickly given the severity of the symptoms. She is doing ok now, but not sleeping at all. We have had our fare share of sleep problems like most of you probably have too. Usually though the sleep problems occur in a flare and now that her day time symptoms seem very much under control, yet she's still not sleeping?! I am wondering if anyone else saw a problem with sleep post ivig? Also, any other ideas to help with sleep? We use theanine, melatonin, and magnesium. As you know the sleep thing is so important, critical, and vital for these kids (and our family). Any thoughts would be welcome. Thanks!
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The Sunday NY Times had an article on cases where there is a misdiagnosis of ADHD when the underlying problem is a sleep disorder. Article here. Letters to the editor in response are here.
