I'm rather confused and getting increasingly worried about my daughter. She'll be 4 very soon and has suffered with blepharitis on/off since the age of 6 months (apparently she'll grow out of it most likely by the time shes 5 years old (ish)). Light sensitivity is just something we live with - its totally normal for her to wear sunglasses and a cap in the car on bright days and whilst out playing on sunny or just moderately bright days. However, approx 1 week ago things took a turn out of the ordinary.
First it was extreme light sensitivity on waking in the morning which then ceased soon after and all was well again (sometimes would take a few minutes to say 10 minutes to "come round"). Within a few days it'd escalated into extreme light sensitivity that would last anything up to 3 hours after she'd got up. (And even then that would be in the house - try taking her out and she'd scream). Her bedroom has blackout curtains and blinds on so there really isn't much light in there in a morning. Sometimes it would take 1-2 hours to get her from her room to downstairs and we'd even deliberately leave all the curtains downstairs closed for her too but alas she'd prefer to sit with her back to the window hunched up and keep her eyes shut at all times. It got to the stage of her having to be carried a lot and walking around while feeling her way around as she'd not be willing to open her eyes. By mid to late afternoon, all would be well again.
Fatigue and general lethargy and lack of appetite goes alongside the symptoms above.
But again, that would get better as the day progressed.
Then just two days ago we had an appointment which I'd made a few days prior at the doctors for her as this was getting worse. But on the morning of that day, I ended up doing something I'd not done before - getting the doctor to do a house call as she was in a right state, bless her. She wouldn't wake up - couldn't stir her - some 3 hours after she'd normally get up. When she did eventually stir she wouldn't open her eyes and on the rare occasions she did all I could see was the whites of her eyes and she'd scream and hold her hands over her eyes (in her blacked out bedroom so its hardly bright in there).
Doc turned up and reassured us it wasn't meningitis (as I feared) but was a bit useless otherwise. She checked in her ears, checked her temperature and then tried getting her to open her eyes so she could look with her bright light shining from the tool they use to check ears and eyes. Alas that resulted in lots of screaming and crying and she never did get my daughters eyes to open (obviously) so she never even got a glimpse of her eyes.
Then diagnosed "surface scratches" (without seeing her eyes) caused by exposure to sunlight or sunbeds(!!) - she was happy to prescribe eye drops to soothe her eyes til we said we weren't happy with that as trying to get them in is nigh on impossible (and we know through having had reoccurent blepharitis issues in the past). So in the end she plumped for an anti-histaime (to be taken orally) - shes been having that for 2.5 days now.
Still no improvement.
Has anyone ever experienced anything vaguelly similar to this - extreme photophobia but mainly in a morning/up to 3 ish hours after getting up - only to gradually improve as the days goes on? And combined with fatigue/lethargy/loss of appetite (again, with the general lethargy improving as the day goes on). Take today - fine since 1pm - playing as usual but squinting again at the TV, when looking out of the window or anything like that. Hated being outside (even with sunglasses and hat on - on an overcast day). But this morning she didn't want to really move or do anything, happy to sit (with her eyes closed) on the settee for 1.5 hours just curled up in a ball really - talking but otherwise seemingly asleep (literally not moving - she looked like she had fallen asleep again til you'd ask her something and get a perfectly coherent answer out of her).
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