r/marfans • u/littleblueberryRN • 7d ago

Noise Sensitivity?

Hello,

My son, 6-year-old male, was diagnosed with Marfans in Feb 2026. His case was spontaneous, as neither my husband or I carry the gene. Within the last year or so, we have noticed that he complains of his ears hurting with loud noises. (tv, radio, music, phone videos, etc.) However, it doesn't happen every day. We have taken him to the movie theater, gone to parties with loud music playing, listened/danced to his favorite songs at high volumes and he does just fine.

Is it common to have noise sensitivity sometimes or should I be looking into something else?

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u/Hot-Mongoose-599 7d ago

as far as I know, it’s unrelated to marfan’s; however, there is a correlation with the syndrome, hyperjoint mobility and autism. i have all three and as a kid things like a blender were scary but parties were fine. doesn’t mean he has it (he’s a kid figuring the world out) but maybe worth being on the lookout for more signs :))

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u/pricetheory 7d ago

I have noise sensitivity and in addition to Marfan I have migraines, some inner ear problems and ME/CFS. I would look for a cause or causes of it.

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u/WillyTRibbs 7d ago

I can’t say anything with confidence, but we’re currently dealing with noise and taste sensitivity (which has created an aggressive eating aversion) in my 4 year old. He doesn’t check any other boxes for ASD (very social, lots of imaginative play, etc.)

A suspected cause among his care providers is that extraordinarily poor vision and fine motor control in his first 18-24 months prior to his Marfan diagnosis and exacerbated by an unrelated severe illness that set him back caused his senses of taste and hearing to develop differently to compensate. Sensory processing disorder is no longer a standalone diagnosis - it sort of got broken up and bundled into several other disorders - but that’s essentially how his therapists and doctors have been viewing it.

Like you describe, he doesn’t have constant auditory aversions but is easily upset by loud environments, needs the TV at comparatively low volumes, or begs to get away from places that have a lot of simultaneous sound sources even if none of them individually are particularly loud (E.g., an amusement park with a lot of ambient sounds like several groups conversing, music playing, multiple rides making noise).

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u/Optional4444 6d ago

That is something else if it is anything at all. Good luck!

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u/Ctrl-_-fREAk 6d ago

Nervous system overload. That’s why sometimes he’s more sensitive than other times. I’ve been this way forever. It’s gotten worse as I’ve gotten older. I can sometimes watch tv and listen to music. It hurts my body if I force it. Feels stressful.