Help! 5 Year Old Has RCE

[RCE555]

So my son cut his cornea three times between the ages of 2 and 4, which I know sounds crazy, but being a wild little boy, the corners of things always somehow managed to end up in his eye. I swear I watched him so carefully but if you've had little boys you'll know what I mean... things happen. Now I believe he has recurrent corneal erosion, and has had two attacks- one 5 months ago and another this week, both in the same eye. When it happened 5 months ago, the eye doctor didn't properly diagnose it, and convinced me that he had simply cut his cornea while he was sleeping by rubbing his eye too hard. Once it happened again this week, I did a little online research and realized what it was. Any of you familiar with this know how painful it is. All I can think is that no 5 year old should have to know pain like this. I haven't experienced anything like it, even having given birth, and it's just hell to watch the poor kid suffer. We We got antibiotic drops and antibiotic ointment for nighttime from an eye doctor at the NY eye and ear infirmary and we gave him Advil for the pain, but it was still so bad. I am going to get an appointment with some top corneal specialists in NYC this week and see what they say, but I'd like to see what everyone on here thinks about dealing with this on a child? Getting eye drops into his eyes several times a day seems impossible. I can't even imagine, he fights me every time and it takes two people to hold him down and get them in. I am able to get the ointment in by waiting until he falls asleep and doing it while he's sleeping. Looking back I think that both times he had his erosions he was slightly dehydrated from sports and forgetting to drink enough- so staying very well hydrated is definitely something I'm going to focus on. I'm told the first thing to try for prevention is Refresh PM which is just a lubricating ointment for bedtime. But can Refresh PM alone be enough? One eye dr said that just doing that at bedtime for a few months could get him to heal completely, but another one told me he'll probably always have this? Should he get eye drops in addition to the Refresh PM? I'm told the 2nd thing to try if the Refresh PM doesn't work is Muro 128, but the doc said that with this, if you miss a day or two you'll almost definitely get an erosion? Then I see a lot of posts about PTK... And I wonder why is it considered a last resort? What's the danger in doing it? I know it seems crazy to want to jump to something that extreme but watching this poor baby suffer so much is about the saddest thing ever so I feel a little desperate. Last night he opened his eyes for the first time in 3 and a half days... I've never been so happy to see him grab his toy guns and shoot us! He's much better today thankfully but I'm dreading the thought of him getting this again. Another question I have is should I get him protective glasses? I was thinking it wouldn't make a difference because it seems to be something that happens while he is sleeping with dry eyes. Any advice is greatly appreciated, and thank you so much to the administrators of this website for having a place to discuss this stuff.
Allison, Luke's Mom

[wagnermid]

Hi Allison,

I am so sorry to hear that Luke is going through this. It is an awful thing to watch your child go through.

My first suggestion would be to get a diagnosis if possible, so to see a corneal specialist , preferably a Paediatric one.

There are a couple of other mothers who have children with recurrent erosions from the UK, Pinklady has experience of alcohol delamination and PTK, I think. These children have corneal dystrophies. Littlemermaid from the UK has a wealth of knowledge on Paediatric eyes. My son has suffered from recurrent erosions since he was about 2 1/2, he has a limbal stem cell deficiency, so diagnosis is really vital.

I would also suggest trying to make the eye drops less stressful especially if the pain is resolving. We have had a lot of help from play therapists over here, I think you call them child life specialists in the US, if you read up on helping children with medical procedures you may get some ideas. We have tried things like giving teddy eyedrops, counting down while giving them, singing songs etc. Recently after having eyelid surgery we got my son to have his eyes cleaned by putting the timer on his iPad, and he would start it while they cleaned and stop when he needed a break. They say distraction helps cope with procedures.

We have found that Ophthalmologists are not great at dealing with children's pain. We see a Paediatric Pain Team at our local Children's Hospital now and they have been great at managing the pain when he needs it, it has made life bearable for him. There is nothing worse than your little one in pain. If the erosions continue I would recommend a pain specialist.

We use night time goggles for protection. I got them from Rebecca here at the Dry Eye Shop, ring her if you need advice. She even had her daughter trial them for us to check the size! We use Quartz goggles now as they pull apart in the middle and sides, my son is a restless sleeper and I feel better knowing they will pull apart if he gets them caught around his neck.

Good luck, I hope you get a diagnosis soon and that this all settles down quickly.

[RCE555]

Wagnermid, thank you do much for the advice, I really appreciate it. I never thought of going to see someone who specializes in pain management in children, I had no idea that existed and will definitely look into it. I also like the idea of wearing goggles at night and will be asking the doctor about it at our upcoming appointment. This website has been such an amazing resource for treatment options as well as moral support, thank you to everyone on here

[littlemermaid]

Hello Allison, Hope the appointment goes well. Mothers are supporting each other here - there's also Tiff with 2 children.

Important to make a list of questions for the cornea specialists, and to stick to it. Otherwise I've found I get so nervous and deferential, they lead the consultation and we come away still with questions. Sometimes the simplest ones have been the hardest and best - like 'will this go away?' and 'what do you think is happening?' It's really good if you can get them to describe their observations after they've examined the eyes (then we can also know what they've checked... eg meibomian glands, tear film)

http://www.dryeyezone.com/encyclopedia/diagnosis.html on diagnosis
http://one.aao.org/guidelines-browse...acticepatterns American Academy of Ophthalmology, Preferred Practice Patterns
http://www.aapos.org/ American Association for Pediatric Ophthalmology and Strabismus - find a doc

It's been useful to type up the history and meds in a list for the docs - far quicker than trying to remember on the spot. Leaves more time for examination and questions.

Wagnermid is lovely but she has far more experience than I do. We both don't want to see you suffer on your own, especially in this state of looking for doctors and diagnosis alone - I've PMed Pinklady too. They've been having a tough time recently with recurrent erosions and they are using bandage contact lenses. We have someone else dealing with microcysts under the bandage lenses for a 5yo with a dystrophy, sitting in the dark for days, and they are not considering PTK. It's about what's actually happening in the layers of the cornea, and how the doctors manage the different factors.

Hope the doctors are experienced and useful to you. 3.5 days with eyes closed is tough. Are they children's eye surface specialists?

[sammygirl32]

Hi rce555, I have a daughter who is three and a half who suffers from Meesmans dystrophy, this causes little mirco cystd to form which burst and cause rce's, i can understand what you are going through it's so hard to watch your little one suffer. Issie had had this prob since she was 7 months and saw lots of consultants before we finaly met the wonderful Samer Hamada at the Queen Victoria Hospital in East grinstead Sussex, it took a while to diagnose Issie, but still isnt a 100% sure.
Issie takes drops half hourly as she also suffers fro extreme dry eyes doesnt produce any water in her eyes at all! She uses Hylo Forte, celluvisc 0.5% ( as this is better for use when wearing bandage contact lens) soduim chloride, Lacri Lube, erythromycin (antibiotics oral) and FML so quite a mixture really. She also wears bandage contact lens and has done in both eyes for over a year, but still has lots of erosions under them, but what i understand is they cut down the pain.
We are recently going through a very bad patch, Issie had cysts all over her eyes that is causing extreme light sensitivty, which she has had to take lots of iburofen and paracetamol for to keep her out of pain and has been on that for around a week already. When things are very bad we use codine.
My Name is Sam by the way and very nice to meet you xxx

[RCE555]

Thank you guys so much for your posts. It is so good to get support from people going through similar things. I'm so sorry to hear about how hard its been Sam. I am also amazed that you are able to get codeine and the other pain meds you mentions for a little one, whenever I ask for something stronger than Advil, the doctors immediately say no. I hope they help ease things a bit for her. And Little mermaid I really appreciate your advice, and used it when we went to see the opthalmologist yesterday. I definitely get flustered when talking to these doctors and it really helped going in with a typed up history and a list so I didn't forget all of my questions. The doctor recommended using either a good lubricating ointment or Muro 128 before bed every night. He said PTK is too extreme at this point, but recommended getting punctal plugs put in because the biggest trigger for my son is having dry eyes when he's dehydrated. He said punctal plugs are not a big deal to put in at all and that even though the child gets put under, its like "going to the dentist." I didn't like how flippant he was about anasthesia on a child, and I didn't know anythng about punctal plugs before he mentioned that option, so I didn't know the right questions to ask. Now that I've researched it a bit, I don't think we'll do it because the thought of putting him under to put them in, and then having it possibly fall out soon after seems a little crazy. He said they can last for years, but from what I've read they can also easily fall out fast too, espcially in children. I'm still thinking about it, but for now, we are going with the ointments each night. I also got a prescription for a drop that will dilate the eye for a few days and stop the spasm of the iris in case he gets another bad erosion, so that should hopefully really help with the pain. I'm still researching punctal plugs and considering it, but I keep thinking that it keeps getting easier to put the ointments in his eyes each night so why risk putting him under. Doctors make so much money every time they do a procedure, of course that's what they're going to recomend. I am seeing to two more doctors to get 2nd and 3rd opinions in the next few weeks. Thank you guys again for sharing, and for all of the recommendations, I really do appreciate it so much.
Allison

[sammygirl32]

Hi again, I told you about my daughters bandage contacts, well she goes under a ga every six weeks, since November 2012 and she also has plugs in top and bottom both eyes, I have to say that they rarely fall out and she has has them in for around two years. I also was getting worried about the times she gets put under and I was assured by the anthestisis (sorry bad speller) that it was such a small amount and for such a small amount of time, but I don't know how different it is in the states. Maybe something you could try as the consultant would be able to have a proper look and she whats happening with his eyes as it may be a underlying condition there? Things like this don't automatically come out at birth, I recently found out I was the carrier of my daughters condition, but carry it silently xxxx

[liz56]

Hi, Allison.

I'm sorry to hear about your little boy's pain. I think your doctor was right in thinking PTK is a bit much for such a young person.

Can you ask them if he has an underlying condition, like Map-dot Fingerprint Dystrophy (also called EBMD, ABMD, Cogan's Disease). If he has it, it may be causing the healing to be a little more complicated than if he does not have it. It's also good to know about, because earlier injuries that heal can present as RCEs after the age of 40 for people who have this underlying problem. Unfortunately, I am one with that problem, myself.

Best wishes,
Liz

[RCE555]

Sam and Liz, thank you so much for your replies. Sam it is good to hear how positive your experience has been with the punctal plugs and that they don't fall out as easily as I thought. It sounds like your doctor is saying the anesthesia is so fast and such a small amount, similar to how mine was saying its as minor as going to the dentist. And maybe while he is under, they can take a closer look to see what's going on inside. Liz thank you for raising the question of an underlying condition- I am going to make sure i ask the two corneal specialists we are seeing about that possibility.

[littlemermaid]

Allison, if you can't get the eyes open for drops and he will lie on his back, it can work to drop them in the inner corner of closed eyes and they seep through, esp if he blinks. I wouldn't do that with steroid though because it affects the skin and needs wiping off anyway. But it's good for saline or tear substitute drops.

Hopefully you've got access to preservative-free eye drops. We were given random generic eye drops with preservatives for 'red eye' at first, antibacterials, anti-allergy, even lubricants, before I found the paediatric cornea specialists and I'm sure they did much more harm than good.

Some of the children are wearing wraparound sunglasses during the day as well as night-time covers.

[wagnermid]

Hi Allison,

Glad you have seen the specialist, but you are wise to seek other opinions, as Sammygirl says getting a diagnosis can be very difficult. It took us a couple of years.

My son has one lower plug, the other side and one upper is not open, he was born that way, but his plug has been in for nearly 2 years and it's been fine. Needing an anaesthetic is a big deal, you need to feel it is going to really help. We are lucky that we can get it all done at a Children's Hospital .

I hope your' son gets better pain relief if he needs it, we struggled with it for many years. We tried the dilating drops which did help but made him even more photosensitive, not so good here in Australia! The Paediatric Pain team have a very different attitude to the pain of erosions from the Ophthalmologists. My sons sleep specialist has described as one of the worst pains you can experience.

Hope he is going OK, it is so very difficult seeing your child suffering. Good luck.