Discussions By Condition: Eye conditions

Child with extremely sensitive eyes (photophobic) especially in the mornings

Posted In: Eye conditions 13 Replies
  • Posted By: Anonymous
  • June 11, 2011
  • 08:54 PM

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).

Help. :-(

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13 Replies:

  • I keep thinking if its something probably related to her getting blepharitis on and off. Maybe whatever is causing that issue is giving her the light sensitivity now .. allergies??? or it may be something else?. I suggest to start trying to get her in with some specialists eg allergist, eye doctor etc etc as her condition sounds more then a normal GP/MP will be able to deal with and I dont think you are going to get help from those. I hope you dont end up getting told the issue is in her head/mind as what commonly happens when doctors cant figure something out esp when it comes to girls, as it does sound like something is wrong. Post back if she starts to get more symptoms eg headaches, sore muscles etc.
    taniaaust1 2267 Replies Flag this Response
  • Thanks for the reply. Well things haven't improved while she has been on Cetirizine for 5 days so I took her back to the GP yesterday who immediately referred us on to our nearest eye casualty at hospital. So off I popped to the hospital - sadly didn't get very far there either as of course she was reluctant to open her eyes for them either. We ended up having 3 nurses, myself, and two doctors to pin her down while they put bright yellow drops in her eyes before they then tried reasoning with her to open her eyes so they could shine lights in them. Naturally by this point she was in an extremely distressed state so we achieved nothing.We ended up with erythromycin ointment (which is a joke trying to get that in after they saw how strong she is when she doesn't want something in her eyes) - got to go back to the childrens opthalmology department tomorrow (Thurs 15th) so I do hope we get somewhere.Overall its getting worse, not better, as shes now waking up in pain at night, writhing at her eyes. Bless her. Its awful to see. I worry they'll have to sedate or totally knock her out before they can have a good look at her eyes as we're getting no where - bribery isn't working - no amount of stickers they give her makes a jot of difference to a very-nearly-4 year old who is in extreme pain when they start poking around prising her eyelids open wanting to shine bright lights in for a good look. :-(I just can't put my finger on why its so much worse in a morning/through to mid afternoon. But by the evening (with hat and sunglasses on still) shes happy as larry and last night was giggling running around the garden playing games with me. But just 12 hours later (i.e. now - when I try to wake her up), she'll be in a right state again. Its really baffling me - why does it get so much worse during the night/while shes first waking up through to 3-4 hours after she first gets up out of bed only to gradually get better during the day?I've stripped her room top to bottom and cleaned everything thoroughly in case it was a dust allergy or something that accumulates overnight. But that hasn't helped (her rooms clean anyway obviously!) and she already has an anti allergy pillow as it was the only one we could get to fit nicely in her bed at the time (so bought it by coincidence). I just am totally baffled and getting rather worried.
    Anonymous 42789 Replies Flag this Response
  • I have a 4 year old daughter and for the last two years she has suffered from all sorts of weird eye problems (swollen lids, red eyes, watery eyes, waking up with eyes stuck shut). She had seen 4 different dr.s and an eye specialist in our town, and they all told me it was nothing to worry about. That it was some common ailment: pink eye, allergies, a topic skin, and such. She became increasingly sensitive to light and always had to wear sunglasses. Then it gradually became worse and more extreme, she would have to sit in the dark for 2-5 hours after waking up every day and was a terror to be around. Then she started walking around with her hand covering one of her eyes when in light, gradually she started doing it even if she was inside in the dark. Some mornings her eyes would be stuck shut. I would have to take a hot wet cloth and steam them open. She demanded to be carried everywhere because she couldn't see. She was always tripping, and would run into everything. One day she decided to run to the car and ran straight into the back of it so hard she almost knocked herself out. When we would go to the grocery store she would sit in the cart with a blanket over her head, same thing when we were in the car. It was so frustrating and I felt so bad for her, she was always stuck inside in a dark room. I dreaded mornings because she was sooo crabby and difficult to deal with. Finally, our insurance changed and she was assigned a new HMO and a new pediatrician, who unfortunately chalked it up to pet/seasonal allergies and that she was just a sensitive person. I started crying and explained to him how serious the problem was and it greatly affected our daily lives, I pleaded for a referral to the Children's Hospital (Madison, WI). The person I was referred to was booked out for 2 years! I couldn't handle another 2 years or more of not knowing what was wrong with her. I asked to be put on a cancellation list of 1st dr available, finally got an appointment, but would have to wait 6 months to get in! I needed new glasses and had an appointment for an eye exam at lenscrafter's; I decided to have her vision tested since we where there. I was completely shocked, the dr. found that she had a infection in her eyes, and was causing heavy scarring on her cornea, and was legally blind in one eye because of it! There was never any indication of bad vision, just sensitivity to light. She got us an appointment the very next day at the Children's Hospital. The pediatric ophthalmologist specialist diagnosed her with bilateral staph marginal disease ( a common complication of blepharitis). She has had the staph infection for almost 2 years. The infection was what was causing the photophobia. She has severe damage to her eyes, now that the infection is cleared the scarring is more visible and blocks 40% of her pupil in one eye. At first they thought that it could be corrected with multiple laser surgeries. However, due to the extreme damage, she is now looking at multiple eye surgeries and a cornea transplant for her bad eye, with her severity of damage there's only a 50% success rate:( She has had to take 2 kinds of eye drops 6 times a day, and after 3 weeks is down to 4 times a day. At first was terrible I had to hold her down and my husband had to hold her eye open to give her the drops, and she kicked and screamed the whole time. After a few days she became use to it and now she doesn't fuss, she understands how crucial it is that she takes them. In just a few days she improved tremendously, no more morning drama. On really sunny days she still complains, but at least now she can play outside. Her new dr. told me that this all could have been cured 2 years ago, in less than 3 days with just some antibiotics and she wouldn't have suffered any damage to her eyes. That between the 5 doctors she saw that there is no reason they shouldn't have caught it. I wish now that I would have been more demanding; when the 1st specialist blew me off making me feel like some mom with Munchhausen's, that I would have insisted he do more testing no more how stupid and unnecessary they thought it was. I now had to leave my job until this is all resolved and she will have to miss going to kindergarten this fall.
    Anonymous 42789 Replies Flag this Response
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    beloBlenula 60 Replies Flag this Response
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  • I believe that I perhaps can help with my advice. I am an adult and have had similar symptoms since I was a child.
    I have this problem with extrem light sensitivity, but only on certain days. After realising the problem and following it up I reached certain conclusions. I believe that is a light adaptation problem. We have some cells like rods and cones in the eye that process light. I don't have enough space here but I believe that iwould help to change the curtains so that the natural
    Anonymous 1 Replies Flag this Response
  • Hello, I'm reading this passage and it sounds almost exactly what my daughter is going through right now, even the part about not being good until afternoon. We've had to have her sedated to have her eyes looked at and they said everything was fine, including vision, astigmatism, etc...just extreme light sensitivity. Did you ever find the solution to the problem your girl had?
    Anonymous 1 Replies
    • October 28, 2014
    • 00:39 AM
    • 0
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  • having almost the identical problem with our 2 yr old at present did you get a diagnosis and how is she doing. We are seeing ophthalmologist no result my heart is breaking
    Anonymous 1 Replies
    • November 14, 2014
    • 00:46 AM
    • 0
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  • I, myself, had photophobia and extremely itchy eyes with lots of winking blinking and I would rub my eyes incessantly. It turned out to be an allergy to dairy products and gluten. I cannot have even A tiny drop off dairy product without my eyes being really itchy. Please give some time to looking at food intolerances and an elimination diet. Speak to your physician and perhaps a dietitian after which you can consult with an allergist.
    Anonymous 1 Replies
    • November 19, 2014
    • 06:06 PM
    • 0
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  • Hi, can you please let me know how your child is doing nowadays? I'm facing a similar situation and I'm truly worried about my son.
    Thank you!
    Anonymous 1 Replies
    • December 16, 2015
    • 01:12 PM
    • 0
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  • Hi,

    My daughter has the exact same symptoms and we can't get anywhere with doctors or hospitals. This has been ongoing for more than a year now and is breaking my heart.

    It is so sad to see a 3 year old who gets excited to go to the park but cries as soon as she's outside that her eyes hurt and it's too bright then wants to go home.

    She also wakes at night with painful eyes.

    Please can you tell me if you came to a conclusion / solution and what it was?

    Thank you in advance.
    Anonymous 1 Replies Flag this Response
  • Hello, I'm so sorry to hear about your daughter. My son will be 6 in October and he has dealt with the SAME exact things you're going through. There are some days I cry because I feel like he is basically Blind. He's had surgery on his eyes since he was about 11months old, 2years old and again at almost 3yo because of inflamed styes on the inside of the eye lids and ever since then he has been very light sensitive. Taking him to kindergarten in the morning is the hardest part of the day. We brush his teeth and get him ready basically in the dark. He screams and cries when we go outside. We've tried eye drops but he freaks out anytime we even come close his eyes. The eye doctors do nothing because they can't check his eyes without having to fight him. If anyone else had gone through this and has had any luck with ANYTHING that helps plz do tell. I'm desperate. It's heart breaking knowing my son can't have a normal child hood.
    Anonymous 1 Replies
    • September 21, 2016
    • 03:06 AM
    • 0
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