I'm back (RCE) but now it's for my 4 year old son.

[ljkq]

I was on this forum about 2 years ago for RCE. I had so much trouble getting a diagnosis, and was extremely frustrated before finding this forum, self-diagnosing and finding a doctor who was aware of this condition through a recommendation (Thanks so much Dry Eye Zone!!). I ended up having 2 surgeries and my problem was solved.

Last night, my son woke up with a scream and was in a lot of pain in his eyes. He's only 4 and a half. Needless to say it was heartbreaking. I'm quite sure he has the same condition, and I'm wondering if anyone has had experience with this with young kids.

Before my surgery, I found comfort with a bandage contact lens and Genteal Eye Gel. I can't imagine how I could get any drops or gel in his eyes, let alone a contact lens. I'm wondering about prevention strategies that a child might find less scary- we used a warm compress last night, but I'm hoping to avoid any future attacks.

I'll get in to see the same doctor as soon as I can, but if anyone has any experience with this in a child I'd be grateful for the feedback.

Laura

[alisonW]

Hi Laura....

I'm a mom too and what I would do for my kids (as someone who also gets erosions) would be to apply an ointment (preservative-free) to his eyelids and lid margins (top & bottom) bfeore bed. I think it'd be easier to do that then trying to actually get drops or gel into his eye. Some of the ointment should seep into his eyes and this will protect him from further erosions while also letting it heal (only thing that works for me too - I like Refresh PM or Sytane's). Good luck.

[ljkq]

Thanks Alison. Are you able to prevent erosions for your kids, or is this an ongoing struggle for you? It's so hard seeing him and knowing how painful this condition is. I'm thankful I've been through it myself though, so now at least I know and have some idea where to start.

Thanks for your feedback. I'll be stocking up on gel for tonight.

[ljkq]

Thanks Alison. Are you able to prevent erosions for your kids, or is this an ongoing struggle for you? It's so hard seeing him and knowing how painful this condition is. I'm thankful I've been through it myself though, so now at least I know and have some idea where to start.

Thanks for your feedback. I'll be stocking up on gel for tonight.

[alisonW]

So far my kids haven't had any problems yet thankfully. I've been lucky myself lately (with regard to erosions) and haven't had one for about a year now. I hope it all works out for your little guy. That would be really hard to watch him go through.

[littlemermaid]

ljkq: I am hoping you can find the right ophthalmologist to see you through this, because I know what it's like, looking for paediatric eye services. It takes great skill and gentleness to examine and treat children's eyes, but having the experience to assess and prescribe is something else. I didn't realise for a long time that the paediatric eye surface behaves so differently sometimes, for example it may opacify where an adult surface would burn. Even now we are meeting senior and experienced anterior segment specialists in this country who are not confident in this. The child's eye surface is less resistent to the damaging elements of adult meds so needs an even more gentle touch for healing eg preservative free 'specials' only easily available through paediatric eye hospitals.

Can you route straight into the Paediatric Service at the University Hospital by turning up at the Eye Emergency Clinic today? Pain is enough for access - he needs immediate assessment. Or, you could see the eye service you trust today, and diplomatically ask them to refer to the paediatric specialists they like asap, keeping your options open, maybe keeping an open mind about diagnosis for a while longer. My heart goes out to you both. I'd be glad to chat if you ever think it helps and would love to know how you get on.

One possible difficult scenario would be if he was being treated in the primarily adult service and they were not sure or couldn't do it and didn't say, letting things drag on because they felt they ought to know, then you were wishing you'd accessed the paediatric service earlier at eg the Hospital for Sick Children, which is what happened to us. Sounds like you may be needing their pain management service and current ophthalmology equipment, if it's what you think it is, and the kind nurses' help with how to instill drops the happy way (if desperate now - lie down on back, closed eyes, drop into inner corner, it will flood through closed lid line, as AlisonW says).

My mistake has always been trusting that the waiting lists are prioritised and the docs know what they're doing on this (mostly, no, unless there's a triage service or a queue-jumping referral it's purely admin; standard wait for this hospital is 4 months but he needs to be seen right away).

One key has been to just to turn up with a suffering child in tow, but it has to be at the right person's door. You can also access them through another doc's phone call, especially another ophthalmologist. You can even just 'phone them up or email direct for 'advice' and wait on their mercy.

Another thing to look out for is that this eye clinic is doing well in lots of specialisms - but of course you need the consultant who is current on corneal dystrophies and can help you with prevention.

If you have any trouble accessing the Hospital for Sick Children eye service in Toronto, which should be referral through any doc, if that is what you think you might want, PM me and we'll compare notes at least. Once this initial crisis is fixed, I wouldn't hesitate to compare a few opinions before you plan your favourite docs for the long haul, if that's what's needed. http://www.sickkids.ca/Ophthalmology/index.html

[ljkq]

Thanks so much Littlemermaid. At this point we got into my trusted doctor and she was absolutely wonderful with him. She looked at his eyes and saw no signs of injury, no signs of underlying issues (I had mapdot fingerprint dystrophy so I worried that was the cause of his too) and said he had good strong eyes. We are hoping that it was the one episode (so far so good 3 nights later) and leaving it alone for the most part. If we have another incident I'll go into full battle mode... she told me to come back if it happened again and then I'll see about referal to Sick Kids. I didn't realize kids' eyes were so different from adult eyes. Thanks for that tip. And our experiences at Sick Kids have been great so far (other stuff when he was a newborn). We're lucky to have such a great kids hospital in Toronto. I will do a bit more research so I'm prepped for the next time, while crossing my fingers there isn't a next time.

And thank God for this forum.

[littlemermaid]

said he had good strong eyes

ljkq: Thanks so much for posting up what happened next! What a relief, and you've got your team in place in case you need them. I do love this forum. This is an expensive solution, but I have acquired an ophthalmoscope to play with although LM is not keen - she prefers anyone but me for routine checks and it does affect our relationship. It does feel like we are eye-obsessed but I get told off for not bringing her in, and also told off for panicking! I ignore all that and err on the side of caution. Emotionally, she mostly takes her lead from me so I try to be careful on that. Luckily paediatrics is mostly a fun place to be. So happy you have a good relationship with your docs, wish you the best.