Weather Affecting Eyes ???

[KaeleysMom]

It's been quite a while since I've posted.  I'm so lucky to have found this group last fall.  Thanks for all of the support!!  I tried to search on my new question, but came up with very little.  So, here I go . . .

I'm confused . . . I don't have SJS myself.  We/The Doctors are suspecting my daughter has it (she will soon be 10).  She is on Restasis twice a day, Refresh LiquiGel at night and Systane as needed.  That takes care of most of her symptoms.  Her last shirmer test didn't really improve the mucus layer with Restatis, but I'm sure that's pretty normal.  But it is improving her out layer of tears - preventing her eyes from cracking.

Her symptoms are mostly controlled right now, just occasionally we will have to put additional drops in.  Now for my question . . . she has been spending more time outside lately (summer is here) and she is complaining the drops are burning her terribly.  When we first began Restasis it really stung her eyes, but she is over that initial period now (It's been about 7 months).  I'm thinking it might be the pollen or the dry weather, but it has been raining like crazy lately.  I thought this would help her, not hurt her with more humidity.  I'm so confused and I can't relate since I don't have SJS.  Can someone help clarify this?  I just hate it when she cries because of the very thing we are doing to try to help her is causing her pain.  It's so hard to see them hurt, especially when we can't do a dang thing about it!!  Does anyone else experience this?

Karen

[jonnell]

Karen,  Did I finally find a mom with a child with sjs, I have been looking for almost a year.  My daughter Jenna has sjs she will be 5 in august and Ive been trying to find a partent I can talk to about her symptoms and what she goes thru.   Jenna has more trouble with her eyes in the summer,  I think it is the pollen and the dry air.  Not sure where you live we live in Jersey and I think the high humidity plays a big part.  Jenna is only on eye drops that you buy over the counter, her eye involvement is only allergic right now not to much dry.  She has major mouth, skin, sun sensitivity and muscle pain involvement.  Feel free to e mail me I have a facebook page and would be happy to have you as a friend.   Hugs and Kissess   Jonnell and Jenna

[Patze]

Hi Karen,

Can you take your daughter back to the eye doctor?  Now I'm not in the medical field, and this is only my opinion, but she might be having a reaction to something, or it could be that with all the extra exercise outside, her eyes might not be getting enough moistere.  When my eyes get dryer, Restasis seems to sting a lot more than normal, but only the doctor would be able to tell you what is actually going on.

And please keep us updated, okay?  I'd like to know what the doctor has to say too.

Take care and give her a hug for me -

Patze

[JJ]

I agree that you need to take her in...as for the rain..and i know it is strange..but

the rain pulls a lot of allergens down out of the air that may just blow on by otherwise.

I know i tend to get a lot of problems come up after the rain. Then it all settles down

and creates new stuff. I always thought when living in Texas that the stuff from up

north that i wasn't use to being around would get blown in...but the rain is what settles

it. I think that is why people wouldn't let their children play in the rain...but they didn't get sick

per say from the rain...just what it brought in. Might i suggest also if it isn't the case already

having her wear sunglasses while out...it will help hold some moisture and be a barrier

against the allergens. May not help a lot but a little is better than none at all.

JJ

[ohiolady]

If she is playing outside with her eyes unprotected, it could be the wind.  During the cold months, she is indoors more and would not have the wind drying her eyes.  I wear moisture chamber glasses.  I'm not sure how much luck you'd have asking a 10 year old to wear glasses while playing.

Anna

[KaeleysMom]

Thanks for your ideas and support.  Great suggestions!

I bought her a pair of sunglasses, but she won't wear them.  I'll tell that it helps other SJS people, maybe that will inspire her.  Maybe I should require it for a week, and if it doesn't help . . . she can stop wearing them.  If she is not seeing results, she will most likely resist.  Kids are kind of hard to figure out!  As far as allergies . . . she has none.  She's been prick tested and nothing came back positive.  So, I'm guessing it is the sunshine and light breezes.  Plus, I wonder if she's drinking enough water.  She has an appointment set up for the 15th, I will inquire then.  I'll let you know how it turns out.

So, what triggers the bad days for you guys? 

Karen

[JJ]

My trigger is stress.....

[jonnell]

Jennas triggers are sun, heat and not getting enough sleep.  And cold air throws her into a coughing attack.

[Poochie]

Hi Karen,
I was having the same problem here just recently. (PA)  I too am on Restasis and use Thera Tears or Gen Teal drops as needed.  I noticed that my regular drops were burning my eyes when I used them.  Really burning like I'd put shampoo in them.  So I checked the expiration date on the bottle.  Even though it hadn't expired it was close, so I purchased a new bottle and went from Gen Teal to the Thera Tears.  I haven't had the problem since.

I think maybe just changing the brand, plus using fresh drops helped.  But please check with your daughter's Eye doctor if it continues.  She could be reacting to something in the grass or just about anything 10 yr. olds get into. 

Please let us know how she is doing.  It's hard enough to be 10 without having this insidious disease.

Huggles, Pooh

[eyeamdry]

I, too, think glasses or goggles are the best eye protection.  They call them moisture chambers.  Maybe if you took her shopping at a sporting goods store she could get something like a wraparound goggle as a child might wear while riding on the back of a motorcycle..  Shop around and see what she might go for.  Another idea is for a "fashion" pair of glasses as you might find in a mall boutique.  You may need to do a little encouraging for her to wear these.  As someone who wore glasses at 7 and from then on, I had no choice, because I couldn't see if I didn't have them on.  I wish I had some better ideas, but glasses really do help very much.  Lucy

[KaeleysMom]

Small Update:  Kaeleys' eyes are still bothering her, but not as much.  I found one of our biggest problems - she had pink eye.  Arghh!!  Can you imagine - pink eye and SJS??  But she survived.     She is still complaining of more dry eye than usual.  We go in next week for a recheck.  I'll let you know how things are going after we hear.

Interesting to hear the different triggers.  I guess it is different for all.

Karen

[jonnell]

Hi Karen its Jennas mom,  Jenna has been having trouble with her eyes to,  think it might be the weather here in Jersey(pollen) How is Kaley doing,  Ok I hope, been thinking of you guys.  Lots of Love   Jonnell and Jenna