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Ptosis experiences & advice please

3 replies

moresleeprequired · 24/01/2018 14:49

Looking for advice from anyone whose DC has ptosis in one or both eyelids. My DD (20 months) is on waiting list for operation but not due to see specialist again for a few months.
I've been noticing what could be described as possible sensory issues for months now...certainly from since she was a baby as her ptosis affects her sight quite a bit so she's always been overly reactive to sounds, noise etc, but I'm starting to wonder about other potentially sensory related things too now she's getting older. Having had a look into sensory processing issues there's enough there to get me wondering.
Spoke to HV who is great but advice is wait until speak to consultant.
Just wondering if the ptosis is having so much of an effect on her sight it's affecting other senses or if it's a separate issue. Anyone have any ideas or experience similar??

OP posts:
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underneaththeash · 24/01/2018 23:17

I can find any studies that relate ptosis to sensory issues.

How much it affects her sight will depend on how much of her pupil her eyelid is covering, if she has a squint or a paretic muscle in that eye and if she needs to wear glasses to correct a refractive error (poor vision) in that eye and also at what age the ptosis first occurred.

What sensory issue is she experiencing? A lot of children of that age are bloody fussy and don't like certain textures/foods/smells etc.

underneaththeash · 24/01/2018 23:17

Sorry OP that should have read I CAN"T find any studies that relate ptosis to sensory issues.

moresleeprequired · 25/01/2018 06:43

Thanks underneath...it's been present from birth her left eye wouldn't open for weeks then it was obvious to see. Bit of the pupil covered and she tilts her head to see straight ahead.
Since birth it's been pretty consistent with loud/sudden noises and it's like she's got bat hearing and so sleeps with background white noise on otherwise stirs and wakes at low level house noise for example

It's been from a young age that other things have bothered her too...crowds, some smells, randomly not liking some houses as opposed to others and really not dealing with with changes to environment I.e someone coming to the house would cause her to cry for ages (still does) even in my arms. She's always been very difficult to calm down, quick to tantrum, trouble falling asleep and the older she's got any kind of transition e.g waking up in morning or from nap or spending a few days at a relatives house just really upset her.

But you're saying exactly what I'm thinking, toddlers are bizarre creatures anyway plus she's my first so I'm clueless. It's hard to know what could be 'sensory related' so to speak and what's standard toddler!
There's been a lot of other things that had me wondering recently like walking up and down hills for 20 mins at a time (seriously Hmm) or playing with same colour toys EVERY time or walking over drain covers over and over. I've been thinking it would make sense if her sight hasn't been the strongest from birth that her other senses would be strong if that makes sense?

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