I was wondering if anyone out there had any suggestions for me. See i just recently started to watch a child with LI. I put on his lotion in the morning and give him his medicine. I am new to this and want to find out all I can. I worry about the child overheating. The childs mother said it can happen in a matter of just a few minutes. So I am nervous to let him go outside now but at the same time there are other kids here and is it fair? And everything I have read so far says kids with LI lead everyday normal lives. That they go outside and play sports. But the childs mother I think wants him to stay inside with the airconditioning the entire day. So I am not sure what to do. I was also told this chid was to never get a sunburn is this normal for people with LI? I just don't know what to do I want to make sure this child is always safe while in my care but I also want to make sure this child gets to be just that a CHILD. So if anyone out there has any suggestions for me please I would appreciate any suggestions.

My 6 year old daughter has LI also and yes they can over heat very fast if not watched. We do a number of things for Ryley to keep her cool. We have bought a cooling vest which last about 3 hours, but it is a bit pricey. We have done wet T-Shirts and a wrap that you soak in water for about 3 min and the put around her neck. All of these help but only for a small amount of time. If it is 90 degrees or hire forget it she stays in until later in the day. She does play sports sometimes if it is not to hot, but she is also at the age where she knows when it is time to stop and get cooled down. They need to drink water also if they are out playing because they can dehydrate quick. Ryley has had a sunburn before but only once. Most the time she has sunblock on. Ryley gets to keep a friend in with her at school if it is to hot to go out that way she doesn't feel so left out, or the teacher has Ryley help her with work in the class room. Ryley gets to be a child and play we just do it later in the day if it is to hot or we keep her in her cooling vest or one of the other things I mentioned. Hope some of this helps.

Shauna

[This message has been edited by ShaunaJ (edited July 12, 2004).]

I have LI and im now 22...I think the best thing is to let the kid be a kid...just make sure they drink tons of water...before and after they play outside. And try to avoid if possible the hotest part of the day....but they say that everyone should do that. *smile* As for sunburns...ive had plenty of sunburns...and i don't think im any worse for the wear.

I hope that helps...there's really no surefire way to prevent overheating...just be prepared when it happens and know how to deal with it. Ive found a cold shower and a nap works great when i get overheated. Which happens a lot in Texas in the summer! [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]

Nadine.

Hi,
i have CIE which is a very similiar to LI. i actually was a kis once, although i am 54 now and barely remember it. lol i grew up before sunblock was ever heard of. i got overheated a lot in the summertime. as i got older i learned to be careful and drink more water. i pretty much did everything the other kids did, i just had to be more careful about getting sunburned. i was outside a lot and later when i was older(18 or so) i got a job which up until a few years ago kept me out of doors most of the day, so i have probably been in the sun much more than the average person. i have gotten sunburned so many times i couldn't begin to count it and i am still ok.
i guess that the point i am trying to make, is let the kid live a normal life, but be more careful about overheating and getting sunburned. i do use spf 70 now and wished they made that stuff 40 years ago.

I have CIE and as a child I was allowed out when it was cooler or to run in the sprinkler or kiddie pool. My mom usually had the sprinkler running even if that wasn't the "activity". Then I could run (even in my clothes) in it if I started getting overheated. This let me be a kid, and still stay cool. Also, you could invite neighborhood kids over and play indoor games with them on hotter days. For me it didn't matter whether I played inside or outside, it mattered whether I was isolated from the other kids.

My son is 11 months old and has LI. He has a problem with overheating too. We lived in Phoenix, AZ until mid-June and I don't know how he would have survived the summer had we stayed there. Walking from the car into the store (takes all of one minute!) he turned bright red and it took me quite a while to cool him down. We now live in southern CA and it is soooo much better for him here in that respect.

I take the kids on walks or to the park or whatever just about every day, so Andrej is in the sun a lot. I try to keep him in the shade, and he's still young so it's easier to do that. However, when I am out and about I have a mister that I use on him to help keep him cool. It came from Costco in a two-pack, and it's basically a water bottle with a hose. If you don't want to spend the money on that, a spray bottle works just as well, though you have to refill more often. The kids love getting sprayed - it's a game to them - and I'll be honest, I've come to appreciate a squirt now and then myself!

Soaking his hat in water seems to help, too. I fully intend on making his life as normal as possible as he grows. Our family is huge into soccer, and I anitcipate that he may want to play too. I plan to do whatever it takes to let him do that, even if I have live in a cooler climate, and to dump buckets of water on him between halves!

Good luck and have fun!
Susie