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Child falling asleep - possibly narcolepsy

3 replies

TwigletTwo · 27/03/2025 10:27

Hi, our 6yr old daughter appears to be suffering from some sort of sleep disorder, and am keen to hear from anyone who may have seen or known similar in children.
Basically, she falls asleep, quite randomly and for a significant amount of time (up to an hour). This often seems to follow getting too hot/overheated, or in very stimulating environments - recently it's been on holiday in a busy, hot market, in Ikea (after running around!), and quite frequently at school, including twice yesterday, both times after PE or running around at breaktime.
She will be absolutely fine, and then suddenly it looks like her batteries run out, and she 'shuts down', falling quickly into a very deep sleep - is near impossible to wake up her (she is a deep sleeper anyway, but it's quite disturbing to see). When she wakes up, she feels absolutely fine.
Generally she's a fit and healthy 6yr old, has a good appetite and a balanced diet, is active and spends a lot of time outdoors, sleeps well (and deeply) at night, doesn't wake up particularly tired. Really nothing unusual to note, other than the fact she had a mild dairy intolerance as a baby which she grew out of, and she has a relatively sensitive personality, but nothing particularly extreme or atypical.
We've seen the GP, a paediatric consultant and a paediatric neurology consultant, and ruled out lots of things including epilepsy (it's definitely sleeping, not fitting), coeliac disease, neurology concerns, blood pressure, diabetes etc, but we're no closer to an answer - and the consultants agree that it's not 'normal' and needs investigating. Our next step is a consultant specialising in sleep disorders, who may be testing for narcolepsy, but apparently it's very rare in children and doesn't have a 'typical' presentation.
Would appreciate any experiences or insights - thanks.

OP posts:
autisticbookworm · 27/03/2025 19:42

Bumping for you

Hazelmaybe · 30/03/2025 21:41

TwigletTwo · 27/03/2025 10:27

Hi, our 6yr old daughter appears to be suffering from some sort of sleep disorder, and am keen to hear from anyone who may have seen or known similar in children.
Basically, she falls asleep, quite randomly and for a significant amount of time (up to an hour). This often seems to follow getting too hot/overheated, or in very stimulating environments - recently it's been on holiday in a busy, hot market, in Ikea (after running around!), and quite frequently at school, including twice yesterday, both times after PE or running around at breaktime.
She will be absolutely fine, and then suddenly it looks like her batteries run out, and she 'shuts down', falling quickly into a very deep sleep - is near impossible to wake up her (she is a deep sleeper anyway, but it's quite disturbing to see). When she wakes up, she feels absolutely fine.
Generally she's a fit and healthy 6yr old, has a good appetite and a balanced diet, is active and spends a lot of time outdoors, sleeps well (and deeply) at night, doesn't wake up particularly tired. Really nothing unusual to note, other than the fact she had a mild dairy intolerance as a baby which she grew out of, and she has a relatively sensitive personality, but nothing particularly extreme or atypical.
We've seen the GP, a paediatric consultant and a paediatric neurology consultant, and ruled out lots of things including epilepsy (it's definitely sleeping, not fitting), coeliac disease, neurology concerns, blood pressure, diabetes etc, but we're no closer to an answer - and the consultants agree that it's not 'normal' and needs investigating. Our next step is a consultant specialising in sleep disorders, who may be testing for narcolepsy, but apparently it's very rare in children and doesn't have a 'typical' presentation.
Would appreciate any experiences or insights - thanks.

She’s definitely not fainting or passing out? Can you wake her? I have pots and I pass out like this sometimes, getting over heated can cause it. Have they checked her heart rate over time and blood pressure?

TwigletTwo · 30/03/2025 22:12

Hazelmaybe · 30/03/2025 21:41

She’s definitely not fainting or passing out? Can you wake her? I have pots and I pass out like this sometimes, getting over heated can cause it. Have they checked her heart rate over time and blood pressure?

The neurologist was confident it was sleep not fainting, passing out or fitting. She doesn’t collapse, she can communicate that she feels tired and wants to sleep, we can get her to somewhere safe for her to sleep, then she goes. We have done a ‘pinch’ test whereby we pinch her arm when she’s asleep - if it was unconsciousness her reflexes would not react, but as she’s only asleep she’ll move her arm when pinched.

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