looking for coping help for child

[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.

[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.

[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

[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

[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

[MyDryEyes]

Lindalou -

Your daughter's story is very humbling for me as I have been feeling very sorry for myself lately. I can't imagine what your very young daughter suffers everyday and the emotional stress you must be under. It isn't fair!! I hope that you can find the relief that you are seeking for your daughter. Rebecca is a wise woman and knows so much about the challenges we face. Give her a call.

Best of luck to you!

MDE

[Mcgoldilocks]

Lindalou,

I really really hope you will find the support you need here. I have been suffering with erosions from childhood, I remember having my first when I was about 9. To this day my mum has a hard time trying to look after me when I'm having an erosion (I'm now 25!!) because she feels helpless.

I also have the 'dots and lines' thing (which has so many names - map dot dystrophy, ABMD, RCE syndrome) but it sounds like your little girl has it quite severely, worse than me anyway. I hope she gets the treatment she needs soon. Has anyone mentioned doxycyline to you? I'm on this antibiotic, it seems to be helping me - I don't know if it's suitable for children though.

In the meantime, here are the things that help me:

No.1 - prevention of erosions. In my case, when I'm dehydrated I'm more likely to have an erosion, so I make sure I drink plenty of water. I try to be gentle with my eyes - I don't stare at things hard, I don't strain my eyes. I am as hygeinic as possible with my eyes - I don't get tap water near them or go swimming (I use baby wipes on my face). My erosions usually come on first thing in the morning or in my sleep - is this the case with your daughter? Waking up slowly and gradually helps with this. I wake up with my eyes closed and wait a minute or two before very gently opening my eyelids. I suppose you could train her to do this by making sure her room has thick curtains so it's still dark in the morning, then you could wake up before her, go to her room and let her wake up naturally while you're there, and as soon as she opens her eyes you could ask her to shut them again - then sing her a song or something to relax her? Anything to keep her calm while her eyes wake up and lubricate themselves.

By the way, yawning produces tears so you could get her to 'pretend' to yawn throughout the day as a way get the eyes lubricated.

Encourage her to sleep on her side - less likely the eyelid sticks down this way.

Make sure her bedroom has a moist enough atmosphere, my erosions are most severe in winter when the central heating is on.

Encourage her to use a sleeping mask. Why not get one for yourself as well, a nice satin one, then she will want one as well to look like mummy.

Avoid going outside when it's windy, dusty.

2. When an erosion is actually happening, the best thing I can do is take painkillers, lie down on my front very still in a darkened room. Sleeping doesn't help - I listen to the radio so maybe some stories (not exciting ones) on a CD would keep her still and occupied while the eyes heal.

I can understand her instinct to grab her eyes - it often feels like there is a something in my eye when I have an erosion. Something cold and smooth against my eyes helps - not an ice pack though, this is too chunky, a flannel dipped in icy water is better.

Are her problems happening every day? When I have an erosion, I wouldn't dream of going to work as it's far too painful and debilitating, so I wouldn't send her to pre-school if she's suffering with this condition every day. Let her start when she's ready so she'll have a happy time. An alternative in the meantime could be a childminder at home who looks after a few children, ask her to keep the curtains closed.

I will rack my brains for anything else I can think of.

[Rebecca Petris]

A doctor friend of mine just reminded me about a brand of sunglasses I had for my daughter when she was a baby - they were awesome but I'd forgotten all about them: Baby Banz. Here's a link.

These are kids sunglasses with a super comfy strap that adjusts with velcro. You could get her to choose all her favorite colors, maybe a matching hat for fun, and try lining the glasses with some kind of foam, even weatherstripping will do the trick, and keep her in them 24/7 so that she could play outside. I just spoke with the company and they confirmed that they have them with clear lenses for indoor wear (the page that has them on the website is down at the moment but they will call back when it's up again).

[lindalou]

Thanks

Thank you, with sincere appreciation, for all of your suggestions and support. I have my daughter sitting here with me, and I showed her all of the responses of people giving ideas to help with her eyes....her response was a deep inhalation and a yell of "YEA!!!!!". Can anyone tell me if they have ever heard of a toddler with corneal erosions?

[liz56]

Hi, Lindalou.

I was reminded of a picture that Rebecca sent a long time ago of her daughter in Tranquileyes, and your story made me recall that. I wonder if other members of the family get some kind of nighttime eye protection and maybe pretend to put in "their" eye drops, maybe she will want to "fit in" and think that compliance with doctor's orders is actually something that everyone does.

It's just a thought.

--Liz

[Rebecca Petris]

I posted a pic in my album since it doesn't seem to be showing up in the thread anymore.

[lindalou]

from my 3 year old

I read my daughter your many words and have shown her some of the photos of suggested items (i.e masks). These are the words straight from her mouth, "I love you for calling them so that my eyes feel better".

[Mcgoldilocks]

Hello, another couple of things I thought of:

Keep eye drops by her bedside. If you do manage to wake up before her, put drops in the inner corner of her eyes once she's awake but before she's opened her eyes - they will seep inside her eyelids after a few seconds. Perhaps she'll be able to do this herself after a while.

Help her make a "special box" to keep at her bedside which she can easily reach over, open and pull out her eye drops while she still has her eyes closed.

To minimise damage she accidentally does to her eyes with her hands, keep her fingernails short and encourage her to wash her hands really thoroughly and often - maybe let her choose her own nice-smelling soap and her own towel. Try not to let her rub her eyes - if she does it then distract her by saying "LOOK!! There's a squirrel out the window!" and rush her over to the window... then put drops in her eyes once she's had a look for the squirrel, and move on to doing something else. Distraction is better than saying 'no you can't do that,' and her getting upset.

Use good old-fashioned bribery to encourage her to sit still for getting eye drops put in. She must get big treats for being brave! Make the actual putting in of the eye-drops a casual affair, nothing to get upset about (easier said than done I know) because straight afterwards something good and fun is going to happen!

This may all sound weird, and not particularly medical, but as I mentioned before I'm 25 years old, and I have had to buy myself a pretty make-up bag to keep all my 'erosion equipment' in beside my bed, nice soap and a fluffy towel to keep myself interested in doing the right things and I bribe myself with treats when I have to have an upleasant examination or whatever. These are all coping strategies I use on myself.

I say to myself "as soon as this is over I'm going straight to the shop and I'm buying that book/shoes/magazine I wanted, once I'm better I'm going to have a weekend break in the country" - anything to keep the mind focused on the positive outcome at the end, and distract myself from the present.

Come to think of it, this is how we coped as well when my mum had cancer a few years back - we booked a Caribbean cruise (2 years in advance) and then we had that to look forward to, think about and save up for while she was having treatment. It definitely helped. This may not be perfect for someone so young, but give her something brilliant to look forward to for once she's better, and tell her that it's just for her because she's so brave and good.

I just need to clarify in my own case I've only been having treatment for the past couple of months, the doctors all constantly tell me that I won't have to cope with this for life, eventually a solution is found. I'm getting better. After only a few months, I'm already so much better. Once you and your doctors try some more treatments, she WILL get better.

Finally, tell her from me that I think she's an incredibly brave and special girl! And you sound like an amazing mum for working so hard to seek out answers.

[Silverlady]

I thought of something.

Since she's so young she probably has a teddy bear that she loves. Get teddy bear a pair of the eyeglasses Rebecca is recommending too. And a pair of the night time tranquil eye goggles also to wear. Make it all a game or fun for her. The humidifier in the bedroom is important and in the winter you also need one in whatever room you stay in the most. I run my humidifiers Winter and Summer. They even make them that look like Bunnies, Bears, and things like that. http://www.bedbathandbeyond.com/sear...e&dim=1&nty=1& When she's going out to play be sure she wears a hat. Not only will it save her face from sunburning, it will shade her eyes. This is my favorite site with children's hats http://www.littlelids.com/2-4Years_spring_summer.htm I sure wish you were close enough for me to help with a few of these things. My grandaughters are too far away for me to spoil.

As far as school, can you home school her long enough to get a handle on her eyes? She only has one pair of eyes and they need the best treatment you can manage. All four of my grandchildren were home schooled due to medical problems : severe allergies, one who had had a stroke, one who is a little ADD, and one who just needs extra help. The two oldest started college while they were in their senior year of school. Smart children. That would be the best way to see that she gets proper care.

My own son needed medicine every day, one dose at noon, and I had a teacher tell me that she wasn't a doctor and refused to give him the medication. The principal told me he couldn't force her to do it. So I drove to school during my lunch break(30 min) from work. I ate a sandwich on the way back to work in my car every day. Not only was this very inconvenient, it was expensive. I drove 10 miles during that time. So the point I'm trying to make is that you can't force a teacher to cooperate sometimes.

Oh, one more tip. If the tranquileye goggles are too long accross the nose and the pads don't cover her eyes, ......I have a very small face and the bridge of my nose is tiny...so I take a satin ribbon, pop the nose piece out of the goggles and poke a ribbon thru the holes in the goggles that the nose piece came out of. I then pull the eye pieces closer together and tie a knot on the outside of the goggles. Then I trim the excess off the ribbon.

Rebecca, can you do rice bags that look like teddy bears? Just a thought

Anyway, hope these tips helped some. My heart aches for you. Give her a hug for me.

Billye

[calli66]

I just wanted to second what Billye just said about homeschooling. I homeschooled my 3 kids---we lived in an extremely rural area at the time, and they would have had to ride a bus for 2.5 hours every day.

Homeschooling is a challenge, but the good thing is that kids can get the care they need without the stress and stigma of "being different." You can pick and chose play-groups--maybe based on having kids with similar needs. You can chose activities like sports, art, drama, music, etc. for you child and schedule these as it's convenient. There are no real fears that they won't "have a social life"---it'll just be a bit different.

The only drawback for me was that it took me out of the workplace for a good 10-12 years. I never did find my "career," although I did work part-time on the weekends, and made pottery (subcontract) at home. So money was a bit tight. The kids turned out fine--each different, and each successful in their own way. The academic and teaching part isn't hard---fun, actually. I did the "Calvert School" (correspondence) for a few years for mid-school.

Calli