looking for coping help for child

[liz56]

The 15 minute thing is VERY difficult with a 3 year old and overall Muro is less tolerated by my daughter because if she has an remnants of an erosions, she screams because it is like putting salt in an open wound.

Oh, yes. As an RCE sufferer, I can attest to the fact that it is very painful to use Muro after a really bad erosion. My eyes would water to the point that I would not know if the drops even worked.

I am so sorry to hear your story, Lindalou. I was heartened when I learned of my own map-dot-fingerprint dystrophy that it sets in "after the fourth decade of life," as several sources claimed. I was heartened, because the thought that children would be spared crossed my mind. I cannot tell you enough how much this news saddens me.

Rebecca is *the* source, in my opinion. When I went looking for help, Dr. Gary Foulks at the U of Louisville sent me straight to her for help.

This site, Rebecca's own words and support and advice, plus Dwelle eye drops turned things around for me. I did not need surgery for my corneal dystrophy, because of regular treatment that lasted over a year. I am still using Dwelle (just ordered more the other day!), and I will use it forever; I even order extra and give it to people, because it works so well and is so little known. It does the trick for me, and I hope that you can find something similarly effective, and, maybe even Dwelle, that works for your daughter.

Let us know how she progresses. I'm sure that all who read your story, like me, will be rooting for her!

--Liz

[calli66]

Hi LindaLou,

I can't imagine the fear a small child must experience with corneal erosion pain. Is there any chance you could stay at home with her instead of having her go to pre-school? Sounds like she needs support and care around the clock---I can't imagine a preschool staff being able to understand what she needs or to administer eye drops frequently enough. If you could spend this time stabilizing her eye condition, then have her go to pre-school later on in the year----would that work?

Calli

[dianat]

Lindalou,

Rebecca will take good care of you. I am quite certain she will discuss with you the possibilities available at the Boston Foundation for Sight. I'm not sure what the threshold is of severity for such a dramatic step, but a baby with corneal erosions seems to me about as horrible a situation as any parent/child should have to endure.

Best of luck to you.

Diana

[Rebecca Petris]

Dear lindalou,

Welcome!

Oh boy - my heart really goes out to you and your daughter! I sure hope that it will be possible to get this under control without the surgery. (I think the second one you're talking about is stromal puncture.) I have a couple of thoughts for you about alternative treatment options if you have a chance to give me a call or email me.

Meantime on coping, a couple of thoughts... all of course subject to your doctors' directions & guidance.

I have a 5-year-old and because of what I do... eyeball related websites, business, etc... she's always been fascinated with eyeball related stuff. I'm wondering if there might be some ways to introduce something eye-related with some positive associations for your daughter. Mine (Chaidie) used to always beg me for eye gear and every now and then I'd give her something (usually a customer return or something) and she'd use them, or pretend to. She's got a Tranquileyes moisture goggle - these are available with a child-size strap; and a rice baggy (microwaveable warm compress - very soothing) with a "sherpa" deep fuzzy organic cotton slipcover that little kids just love because it feels like a teddy bear.

Dream Essentials makes some kid-friendly sleep masks - see link.

I wonder if it would be possible to get her into some kind of "moisture chamber" for at least a little bit of the day, which could dramatically cut down on the frequent dropping requirement. Seems like even an hour or so a day might be a help. Chaidie loved wearing sunglasses at that age. It MIGHT be possible to get something ready-made that fits but if not, you could take a pair of kids sunglasses - some kind of really fun design - and use the foam pads made for the Tranquileyes goggle, or some other kind of self-adhesive foam - to line it and form a moisture seal. That is the best way I know of to reduce lubrication requirements and make people more comfortable. Plus, that way she may be able to play outside. If she does go to preschool I would think some kind of eyewear will be essential.

Please don't hesitate to call... 1-877-693-7939, x717. I'm here from 9am to 5pm pacific time and if you don't get me, just leave a voicemail and I'll call back as soon as I can.

[lindalou]

Hi everyone. I joined the forum to look for coping mechanisms to help my 3 year old daughter. She had her 1st episode of light sensitivit at age 2 (this past January) on a vacation to FL. After several visits to drs. (pediatrician, opthalmologist , pediatric ophthalmologist specializing in genetic, and a coreal specialist), we discovered that she "dots and lines that spoke out like a wheel" on her corneas, has granular corneal dystrophy (inherited from my husband) that is usually not noted until later in life, and had active corneal erosions. We started with lacrilube to help with the erosions, but it didn't work. We are now on Muro ointment at night, and drops every 15 minutes in the morning as tolerated. The 15 minute thing is VERY difficult with a 3 year old and overall Muro is less tolerated by my daughter because if she has an remnants of an erosions, she screams because it is like putting salt in an open wound. The next step is a superficial keratectomy and some sort of poking of the eye that will help the corneal adhere better to the basement membrane?!? She creams and grabs her eyes at least once a day, she cannot tolerate going outside in bright sunlight, and dreads camera flashes. I am dreading the start of prechool next month and am looking at any suggestions to help her cope and to ease the discomfort. I have not had luck finding info. on children dealing with coreal erosions. Any links/forums/advice is greatly appreciated.