Extreme dry eyes

[sammygirl32]

Hi, has anyone dry eye that bad that they have no liquid in their eyes at all that's how bad my daughters eyes are! how do you cope with it being that dry and how does it feel for you as my daughter is only two and a half and cant tell me yet! so I hope some one could shed some light what they do and how you cope esp with light sensivtivity and if you have erosions with it as well like my daughter does it was so bad yesterday her whole cornea was coverd in them poor love. thanks hope to hear fro2m you soon

[bakunin]

Hi sammy,

So sorry for your little daughter. It seems she has severe dry eyes. What she feels may be unbearable. Imagine having pepper spay in your eyes all the time. More people on this board, like littlemermaid can give very helpfull information to you.
But I guess you should pay attention in her nutrition, if she has some allergy, if milk, gluten, meat or anything else is possibly doing harm to her, if her guts are okay. I don't know, but it seems to me that dry eyes in such young age has to do with something more systemic (but i'm not an expert of course)

wish you all the best

[robster]

Sammy it could be worth sending a private message to a member called LittleMermaid her daughter has dry eye and she knows alot about the NHS services available to children with dry eye.

[littlemermaid]

Sammygirl's looking for help understanding what epithelial membrane dystrophy with severely dry eyes and persistent corneal erosions feels like, as Bakunin says.

And to compare treatment protocols with people round the world because this is hard to manage.

She's also looking for tricks of the trade to keep life as normal as possible.

So please, people, continue replying on what's helped with erosions. Doc-wise, she's doing well but this is hard to manage. Lots of us are finding that we are getting the best advice from docs, but that the tips we are picking up here and from the literature available on the internet are making a big difference.

Robster, It'd be good to hear she's got Moorfields, the national eye hospital, as well as the docs she's seeing now, so she's got best available on eg amniotic membrane patching. Also Moorfields have a confocal microscope if she hasn't been examined that way yet. I would be wanting Moorfields Cornea team to have seen this. That's what I'd do, but then I would definitely see who she's seeing locally as well for ongoing kind NHS support, and in case his boss comes up with anything useful on his travels. Pinklady's very good on this.

Sammygirl, do they know if the cornea problems were caused by anything specific? any history in the family?
- or is it that the little one's eye surfaces are difficult to manage because the lack of tear is caused by something?
- I was wondering why she is only on FML one a day? is this a tapered dose? and what is the maximum steroid she's ever had?

Did you sort out with the docs when to worry? and when to take her in as an emergency? what is the cover for when your normal Ophthalmologist is not in clinic?

Do you ever get a break from this?

I'm no doc-shopper expert: LM and I use Dr Foster website, get research feeds on keywords from Google Alert and PubMed, some doc-info journals, and Dr Google - or 'Professor Google as we call him here' as our very kind Rheumatologist jokes. We're all just trying to help each other through this.

[spmcc]

I don't have EBMD (and I am happy to see that Liz replied to another thread/question from sammygirl32 - Liz is the EBMD expert!), but I remember one past post (and thread) dedicated to RCEs that stands out in my mind. Here is a link: http://www.dryeyezone.com/talk/showt...0111#post70111. I hope something there can help.

[LaDiva]

Bless you and your daughter! I don't have much useful information for you, but I think if it were my child I would find some moisture eyewear for her. Not sure if that is possible with someone so tiny, or if she would keep it on, but I have seen small children with eyeglasses and an elastic band keeping them secure. Best of luck to you. I am thinking and praying the problem is due to allergies.

[wagnermid]

Hi Sammygirl,

I really feel for you, it is really hard to watch your child suffer.

My son has really dry eyes as well as RCE.

With light sensitivity my son now wears Wiley X sunglasses with prescription lenses ( at10) but from 6 months old he wore "baby banz" sunglasses then "kids banz". I looked up their website and they sell them in the UK now ,
Website: http://www.esunproof.co.uk or search for babybanz. They are close fitting and really comfortable with a soft band around the head. I think he wore them till he was about 6. He always wears a sunhat outside too.

He wears his sunglasses inside if the light is bothering him and we keep the blinds and curtains closed a lot of the time, it's the only way he can cope sometimes. We have the darkest legal tint on our car windows now and with glasses and hat he normally copes in the car if he sits in the middle seat. On our old car the tint wasn't as dark so we used stick on sun shields on the side windows.

We have tried goggles at night as he does not close his eyes well. First we tried taping and eye shields but he is very restless at night and they just came off . We got tranquileyes with a child strap from Rebecca but they would end up round his neck and I worried about choking. We currently use Quartz goggles as they come apart if they get stuck, but they still come off because he is restless.

Hope things settle down for your daughter. The other thing that has helped my son is being linked in with the pain team at our Children's Hospital, getting good pain relief when he has erosions has really improved his life.

[liz56]

Thanks for your confidence, spmcc. What a terrible thing to become an expert in! What I learned talking with people is that causes are many-- injury, failure of the lid to close, genetics, dry eye, diet, and other things. My problems all added up to RCE, and they included EBMD, which started when I was about 40. The erosions happened in places where I'd had abrasions from hard contact lenses in my youth, but those places had changed and when EBMD manifested itself, those spots were vulnerable. For me, eyelids not closing all the way is a big thing, so goggles really helped.

Hang in there, Sammygirl! Keep trying to figure out the cause. I'm so sorry to hear this story about a child. It just seems so unfair.

--Liz

[Rebecca Petris]

We have tried goggles at night as he does not close his eyes well. First we tried taping and eye shields but he is very restless at night and they just came off . We got tranquileyes with a child strap from Rebecca but they would end up round his neck and I worried about choking.

Holy cow even after all these years that's a possibility that never once occurred to me and I can sure understand the worry! Thank you for mentioning this.

Night eyewear for wee ones is such a challenge. Tranquileyes and frankly most other eyewear gets pushed off, taping is too scary as they wake up unable to see. A lot of pediatric ophths will provide bandage lenses for infants - worth asking - I am not sure how they feel about toddlers.

If it were my daughter, other stuff I would try at night would include:
- NITEYE (big, but you could trim down the flange with scissors maybe? gets expensive but you can get in bulk from manufacturer),
- Squares of cling film
- Jury-rigging a Quartz strap with some velcro. (Tranquileyes is possible for some kids but it's so bulky, sits so far off the eyes, it's too liable to get pushed off in the night when they move.)

For light sensitivity, I'd totally second wagnermid's suggestion of KidBanz, great product.

[wagnermid]

Rebecca,

The quartz goggles I got from you "pop"apart at the nose and the sides really easily so they don't pose a choke hazard (in my opinion). It really only needs a slight tug and they separate. I have become an expert at re-assembling them in the dark! Our problem is he is so restless nothing stays on for too long.