Child with RCE

[Pinklady]

I am new to this forum so please bear with me! I have a daughter who is 3years old and suffers from RCE. She has this in both eyes and it flares up every 3-4 weeks. Obviously those of you who have this condition know how painful it is and we are doing everything we can to help her.
She had punctual plugs fitted last year but made no difference. She then went on to have Alcohol Delamination but again we have seen little improvement. She currently take Erthromycin medicine every day, Hylo-Forte drops hourly through the day, Lacri-Lube at night and once again in the middle of the night.
We are now looking for any other treatments/ advice that anyone can give as I can't bear to see my little girl in so much pain.
Can anyone help ?

[Rebecca Petris]

So sorry to hear this. Poor thing!!!

Member LittleMermaid is our resident UK expert on getting good care for kiddos in the UK

Are you using any form of physical barrier protection overnight: Taping eyelids shut? Bandage contact lenses to protect her eyes overnight? Sleep mask or goggle or patches? Those latter are difficult at that age but I know of some youngsters who use the NITEYE bandages successfully. Quartz silicone shield with a child size strap might be worth trying (more comfortable than most alternatives, though can't be sure till tried whether it will stay in place adequately). I would recommend Tranquileyes goggles which can help a lot with erosions but I believe kids that age can hardly ever keep it on all night, too bulky.

Clinitas Ultra 3 (sold over the counter in the UK - not sure if it's at pharmacies or has to be ordered online) can be very helpful for erosions but it takes awhile of regular use before you see results.

[littlemermaid]

OMG. Pinklady, I've PMed you so we can talk docs... If anyone's wondering what's happening, Pinklady and LM are doing the same doc rounds in tertiary referral and we're chatting ~ love this forum.

[Rowanberry]

I found that lacrilube alone did not stop RCEs, the cream did not coat my entire eyeball. I get much better results when I put a drop of viscotears, or any liquid drop in both corners of each eye.

Gently moving the outside of the eyelid to separate the layers ( I use two fingers and barely move the eyelid) instead of a sudden pull has prevented a lot of RCEs for me.

I hope something helps,

R.