Hi from Sydney Australia

[wagnermid]

Hi.

My 8 year old suffers from recurrent corneal erosions and suspected limbal stem cell deficiency. He has a disability and can't speak but signs Auslan (Australian sign language the equivalent of ASL). It is difficult to know what his symptoms are as he doesn't know anything other than pain. We know when he is in pain by his behaviour rather than him telling us. He has fantastic medical care both for his eyes and pain, but it is so useful to read adults expressing how much pain he is in so that we can put words to his actions and advocate for him.

We continue to try goggles at night but it is difficult to keep them on, his sleep has always been disturbed. He wears close fitting prescription sunglasses when in the light which here is most of the time! Any suggestions are appreciated,

Ann

[Rebecca Petris]

Hello Ann and welcome! I'm sorry I didn't notice your post till now.

My heart goes out to your son, and you! Very, very challenging circumstances but I'm so glad he's got such a good advocates and has good care!

What kind of night goggles have you tried? I think with kids usually the lowest profile things tend to have the most success. I wonder if an onyix/quartz type shield with a child size strap, well tightened, might do the job? If it were my child that's probably the first thing I would try. Another would be kidbanz (I think they're made in Australia?)- not really designed for night use but I bet it would work.

I have an eight year old daughter who loves playing with all the dry eye paraphernalia I have around and I'm sure she'd be more than happy to do an overnight trial run of any eyewear if it would be any help to hear her opinion! Just let me know.

Dwelle would be a really good thing to try for the RCE. You might want to look into Dr. Holly's drops and their history - they have been a big help to many RCE patients here in the forum.

One more thought. Have they ever used bandage contact lenses for him? I know they do this with much younger patients successfully.

[Rebecca Petris]

p.s.

p.s. I wonder if the OSDI might help at all in some way with capturing and comparing his symptoms. It's simple (for adults), probably too sophisticated for this situation but it could prompt some ideas for a modified/simplified version.

p.p.s. Just realized I'd already pm'd with you last month so I'm kind of repeating myself here, sorry!

[wagnermid]

Thanks rebecca

Hi,
I am willing to try anything so all suggestions will be most welcome. He does get used to things so although he might not like it initially he gets there with perseverance. His glasses frames are about 12.5 cm wide.

I purchased the tranquileyes goggles last year, but they don't stay on long!

Prior to that we tried eye taping which usually came off on the pillow or he woke screaming hysterically in fright from the inability to open his eyes, and eye shields tapes on which came of on the pillow too. He sometimes decides to wear his sunglasses to bed but of course they come off too.

I have tried kidsbanz, he wore them all day until he was about 5, back when I didn't know I should be trying to protect his eyes at night, so I resurrected them last year thinking they might work at night but the are too narrow across his face and sit too close to his eyes now.

Thank you for offering to get your daughter to try them, tell her she is really kind and we would very much appreciate her help. Let me know your suggestions. I really appreciate the help, it would be great if we could decrease some of his symptoms especially the pain.

My dream for him is that one day he will be painfree and see the outside world without dark glasses as he doesn't know what it looks like!

Thanks,

Ann

[liz56]

Hi, Ann.

I, like your son, suffered from rce's, and it is possible to manage the condition, but I am sure it is hard with a child (because it was hard for me as an adult). I'm sorry to know that he has this condition.

I was wondering if you observe that maybe he may not be closing his eyes fully when he sleeps. Or, if you cannot tell, because it does not take much for that seal between the lids to allow the eye to dry out, ask his doctor if the erosions form around the same area. If they do, is it around the six o'clock region? I ask, because that is common for people who have logophthalmos. If that is the case, regular TranquilEyes may go far to help in ways that taping may not and may be worth continuing to try. For me, erosions occurred during REM sleep, so I never taped, because I feared the stiffness of the tape. So, I used and still use TranquilEyes because they allow for better flexibility.

I also apply Dwelle every four hours through the day and Genteal Gel at night before putting on the goggles.

I hope there is something in all of that that helps, and I wish your son the best as he works to get out from under this problem. He's lucky to have such a caring mom looking out for him!

Best wishes,
Liz

[Rebecca Petris]

Well, Chaidie tried the Quartz last night. I didn't have a child size strap handy though and the adult one wouldn't really tighten enough. It came off once in the middle of the night, she said, and she woke up and put it back on. Came off again in the morning. I will try again when I've got a shorter strap. She didn't mention any problems.

Another product that you might want to look into is the Medtronic Nite-Eye Bubble Eye Bandage. It is a single-use product so it gets very expensive over time but it could be useful as a stopgap for convenience and I know a few people who use them daily. Here's a link. It's basically a sort of clear plastic bubble with an adhesive at the edge so you put one over each eye. I've never used it, and I don't have any here so I can't get Chaidie to test them but I've known many people who used them including if I remember right one or two children.

Both Quartz and the Nite-Eye do a lot to protect against exposure but don't do anything to secure the lids which with RCE can be a really big deal.

Tranquileyes certainly does a better job in this regard but it's hard to keep it on a kid. I've known one or two who held it in place with a bandana. Not much fun but seemed to work.

I was thinking last night about the suspected LSCD and all that daytime photophobia etc. Kids can tolerate a lot of dry eye without noticing or expressing anything about pain so it sounds pretty severe? I am wondering if you might want to look into sclerals (if you haven't already). Hard to do in Australia. Boston Foundation for Sight has some clinics in India, that might be the nearest. Obviously that's a big deal in terms of travel/cost/inconvenience, and challenging as an ongoing care thing too, but just thought I'd toss it out there as a lot of kids have 'gotten back their lives' with this tool.

[wagnermid]

Thanks for the help

Hi,

Firstly thanks to Chaidie from Reece! What a kind little daughter you have Rebecca.

I will order the Quartz, is there a child size strap available? I figure that is a good place to start. Maybe when he gets used to them he can try the tranquileyes again with a child sized strap. I am a bit of a novice at the difference between protecting against exposure versus securing the lids, so the advice is great.

His lids don't close properly and his erosions are usually right across the middle of eyes in a line, although they are sometimes just speckled everywhere. He has lubricant every 2 hours during the day, a gel at night, cortisone eyedrops all preservative free, and is continuously on oral antibiotics which have cut down the ulcers.

He has a fantastic corneal specialist so I will ask her about dwelle and the sclerals. They may not be possible at present but will discuss it anyway. My husbands brother lives in Texas so are thinking of a trip to the US.

Thanks again for the advice,

Ann

[Rebecca Petris]

(Chaidie's waving )

I will order the Quartz, is there a child size strap available?

I've got the child size ones backordered at the moment... should have more about the middle of next week.

Here's a link:
http://www.nexternal.com/tdec/quartz...wrap-p413.aspx

My husbands brother lives in Texas so are thinking of a trip to the US.

That will be a great location if you need to look into sclerals someday... depending what part of Texas (big state). Boston Foundation has a satellite clinic in Houston, and my favorite optometrist who fits his own custom sclerals is near Dallas.

[EileenL]

My son roams the bed at night as well. He still falls out of bed at night.
The only thing that seems to keep him still is a really cold room. I'd need two or 3 blankets but he does fine with one and stays in place much better during the night.

[wagnermid]

Thanks rebecca

Thanks for the link, I am eagerly awaiting their arrival!

My brother-in-law and his family live in Houston so if we need to go down the sclerals path in the future at least we have a place to stay!

Thanks again,

Ann