looking for coping help for child

[VICTORIA UMBERG]

Kids with eye problems

Hi,,its nice to find another parent...I have a daughter who at 2and a half was diagnosed with an orbital tumor....she is presently 9 and has had 7 surgeries to date..perhaps one more reconstructive surgery in the future....anyway, we have been through it with patching her healthy eye daily for 7 years to address amblyobia, eye drops every hour..some that sting, wearing special sunglasses with foam lining, patching her eye shut at nite for exposure keratitis etc etc. Generally our life has been about her eye and its health...we live in the anxiety...compliance was always tricky and I did develop a few strategies. She is stable right now..Praise God and Ive worked really hard to help her lead as normal of a life as a kid can with a chronic disease..would love to share more with you or anyone with a child etc etc....You'll do whatever it takes for your child...Vicky

[nahzee]

Ok, so, in general, I don't know much about much. But I know a LOT about photophobia.

To sell the same product I've mentioned over and over: I would not be as independent as I am without NoIR medical. Without their specialty lenses, I would not be able to step outside the house.

I cannot suggest them more. They sell quite a few frames geared at children, and if you pick a close-fitting one and use an elastic strap (this works well for the wrap-around or fitover), you'll get pretty little light leakage, and also helpful for dry eye, less AIR- more humidity, less dryness.

For me, red is 'my colour' and it works pretty well for me. One of their other popular colours, because of the relatively good colour transmission combined with smooth light filtering, is the amber colour. It comes in three different levels of darkness (the LOWER the number, the darker) and I suggest trying them all- NoIR will usually 'replace' a lens you don't like without even asking you to return the first one, since they cannot resell them anyways.

It is genuinely a great investment, and I cannot in my experience suggest any company more.

noir-medical.com

[lindalou]

Thanks Liz, for your suggestion at looking at the bigger picture rather than each piece of the puzzle. At her 3 yr. old check-up in March, all the dr. really said was, "Wow, she's had a rough year, didn't she?". The pathology reports on the abscess said it was strep that caused it. But it was wierd that the corneal erosions started about 2.5 - 3 weeks later. I did point that out to her cornea specialist, but he didn't indicate that it raised any flags. It is interesting to read that others, like yourself, had other illnesses about the time of the erosions....hmmmm....time to do a bit more research. I think that I'll start a new thread asking others.

[liz56]

Thanks for the additional background information, Lindalou.

Can these things be related? I ask, because while I think that I have had this dystrophy for a long time, it did not manifest in RCE's until recently. (I'm 41, and it began when I was 40.) I read that 90% of people live with EBMD forever without even knowing they have it.

Your daugher's incident with the lymph node made me take notice. I have some kind of thyroid problem. I am definitely sub-clinical hypothyroid at times, but why, whether it is from Hashimoto's disease or something else, remains yet to be identified. This condition forced me into "significant" anemia, and even once that corrected itself with iron supplements, problems continued. I am on synthroid, and it is helping. However, I am always wondering if the RCE's / dry eye have a connection to this or some other systemic problem.

My experience has been that I thought that I just had heavy periods, which triggered anemia, then I thought that a six-week rash was an allergic reaction to something, then I thought that my RCE's were just because of EBMD, and I thought fatigue was spending too much time at work, and I attributed the ringing in my ears to tinnitus. You can see what is going on here. All of these problems seemed to be so unrelated, but once I got on synthroid, they all started to correct themselves.

It may be worth having a conversation with your daughter's primary pediatrician and presenting a list of this year's events to see whether or not there may be something underlying it all.

You are such a thoughtful mom! It sounds like you are doing everything possible to be sensitive to your daughter's wishes, hopes, and negotiating her limits with as little intrusion into her sense of normalcy as possible. She's one lucky girl to have a mom like you.

--Liz

[lindalou]

more to our story

Home schooling is an option, but I'd like to keep it as a second choice. What I haven't mentioned is that my daughter has been through the ringer this year. She has had surgery to put tubes in her ears, she had an abscess in lymph node in her neck on Christmas Eve and had surgery on it Christmas Day (we were in the chldren's hospital for a total of 5 days), and have discovered that she has a severe allergy to peanuts and tree nuts (EPI-Pen allergic!). So now the corneal dystrophy and erosions have been added to the list. She has missed out or had special "circumstances" throughout the year. She wasn't allowed to go to the baseball games because of peanut dust, she can't eat birthday cake at friends parties (so I bring her a special cupcake or chocolate lollipop), she couldn't be with everyone on Christmas because of her surgery (although Santa came to the hospital and he left gifts under the tree), she had to trade in all of her Halloween candy from trick-or-treating for "special" treats that were all nut-free. The list goes on and on. So she is very much looking forward to going to school like her sister and her playgroup friends. She's been playing "going to school" since she could walk and talk. She has visited preschools and gone through the interviews and open houses. I just don't have the heart at this point to tell her that there is something else that she can't do. I will definitely keep home schooling as an alternative, but would rather try to find coping and healing measures to help her have a successful transition. I already made sure she is scheduled for the afternoon program, as her eyes are usually better as the day progresses. So please, please keep any ideas coming my way :-)

[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

[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

[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.

[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".

[Rebecca Petris]

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

[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

[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?

[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).

[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.

[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