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Scary sleep disturbances (long)



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amother
Salmon


 

Post Mon, Oct 30 2017, 5:06 pm
DD had some very scary sleep disturbances over the course of about two years between 3 and 5yrs old. She would get up walk out of her room, with her hands moving in a sort of rhythmic way (bringing thumb to closed fingers in a "chat" motion), then she would put her hands to her mouth which would seem almost clenched shut in a grimace. She'd be crying I'd hold her rocking and immediately after the episode she'd fall asleep (which never ever happened when she woke up for any other reason). As she got older the hand movements stopped, but she would still put her hands at her mouth, and be shaking. A little older and she would be speaking words, but strangely, and scared. At the end she would wake up from a nap this way, or it would happen just after just getting up after a nap. She would be shaking, scared, putting her hands to her lips, speaking gibberish. It would usually happen when she was sick, months would go by without any of it, and then a couple times while she was sick, or just a few times, and then nothing.

When we first brought it up with her dr he sent us to a neurologist. We went to top child one, who brought up some sort of epileptic seizures, but that she may grow out of, or not, or possibly just get much worse. After a couple of visits, over the course of several months, or a year he decided none of it resembled epilepsy, he had misunderstood our initial description and we should see a sleep specialist.

all of this petered out and now a couple years later, I just saw it again for the first time.

I am so worried we are not doing what we need to for her. should we see a sleep specialist? the other top neurologist? There were two top drs locally and the people we spoke to basically said if you see one you don't need to see the other. I thought a second opinion is pretty common, why not, but at the time, I couldn't deal with all the back and forth to make the appt, deal with insurance etc. and nothing happened (meaning my husband didn't want to do it, so since I couldn't, it didn't happen).

any suggestions, thoughts experience with these kinds of things? she's interacting with me, trying to have a conversation, answering my questions, so I thought that's different from night terrors...

thanks for reading if you have this far...
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amother
Slategray


 

Post Mon, Oct 30 2017, 6:15 pm
amother wrote:
DD had some very scary sleep disturbances over the course of about two years between 3 and 5yrs old. She would get up walk out of her room, with her hands moving in a sort of rhythmic way (bringing thumb to closed fingers in a "chat" motion), then she would put her hands to her mouth which would seem almost clenched shut in a grimace. She'd be crying I'd hold her rocking and immediately after the episode she'd fall asleep (which never ever happened when she woke up for any other reason). As she got older the hand movements stopped, but she would still put her hands at her mouth, and be shaking. A little older and she would be speaking words, but strangely, and scared. At the end she would wake up from a nap this way, or it would happen just after just getting up after a nap. She would be shaking, scared, putting her hands to her lips, speaking gibberish. It would usually happen when she was sick, months would go by without any of it, and then a couple times while she was sick, or just a few times, and then nothing.

When we first brought it up with her dr he sent us to a neurologist. We went to top child one, who brought up some sort of epileptic seizures, but that she may grow out of, or not, or possibly just get much worse. After a couple of visits, over the course of several months, or a year he decided none of it resembled epilepsy, he had misunderstood our initial description and we should see a sleep specialist.

all of this petered out and now a couple years later, I just saw it again for the first time.

I am so worried we are not doing what we need to for her. should we see a sleep specialist? the other top neurologist? There were two top drs locally and the people we spoke to basically said if you see one you don't need to see the other. I thought a second opinion is pretty common, why not, but at the time, I couldn't deal with all the back and forth to make the appt, deal with insurance etc. and nothing happened (meaning my husband didn't want to do it, so since I couldn't, it didn't happen).

any suggestions, thoughts experience with these kinds of things? she's interacting with me, trying to have a conversation, answering my questions, so I thought that's different from night terrors...

thanks for reading if you have this far...


Sooo scary. I would look into pans/pandas. The bolded is a big fat red flag that what you are dealing with is neuro-inflammation due to infectious triggers, which is basically what pandas is. The hand movements sound a lot like sydenham's chorea, a known complication of strep and the prototypical disorder upon which the pandas hypothesis is based.

Is she otherwise neurotypical? Does she have any symptoms like anxiety, ocd, motor issues, sensory issues, picky eating, hyperactivity? What is she like during the day?

Just a head's up, most doctors will brush you off if you bring up pandas, unless they are pans/pandas friendly. If your pediatrician is willing, you can start by drawing titers for strep, mycoplamsa, ebv, flu, coxsackie antibodies. Lyme is a biggie too, but the standard tests for that are highly unreliable. Those are the most common culprits. Pandas is not diagnosed based on bloodwork, but these labs are a good place to start.

If you are in NY, Dr. Wendy Vargas is a pandas-friendly neurologist who works out of Columbia and takes insurance.
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amother
Salmon


 

Post Wed, Nov 15 2017, 4:00 pm
Thank you so much for your feedback. I'll look into it. Our pediatrician is amazing, and helpful, so hopefully open to this type of thing. I will bring it up with her. Thanks for the NY suggestion as well. We don't live there now, but return to visit family, so we might consider it if we can't get anywhere locally.
Thanks again!
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simcha2




 
 
    
 

Post Wed, Nov 15 2017, 4:31 pm
Does she remember any of it when she wakes up? If not, it could be a parasomnia from disturbed sleep if she is sick. (Not breathing well, fever etc).

They don't generally do anything about it. It is similar to night terrors on young children.
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