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New Mom with questions for you

Last post 10-22-2008 11:22 AM by Danielle. 23 replies.
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  • 06-20-2006 12:00 AM

    New Mom with questions for you

    Hi All,
    My son is 8 months old with oca(type unknown?) and we live in San Diego where it is sunny all the time. We love the outdoors, beach and hiking. Our house faces into the sun and it is dreadfully hot in the summer. My son tolerates the sun in the house and wears his sunglasses outside sometimes. He seems to like being outside but closes his eyes or turns his head away from the sun or looks towards the ground.
    My questions are:
    1) How much sun is ok?
    2) Did you like the beach, what accomodations should I bring, umbrella, long sleeve clothing (of course hat and sunglasses)
    3)Should we move????
    4) Is hiking outside ok?
    5)How much son was enough?
    6) Any advice is greatly appreciated.

    Thank you all. I want to live as normal of a life as possible for my son, but I don't want any harm to him. I really appreciate your thoughts.
    A new Mom who loves her son
    • Post Points: 290
  • 06-20-2006 12:00 AM In reply to

    • Genia
    • Top 100 Contributor
    • Joined on 05-13-2006
    • Posts 70
    • Points 710

    Re: New Mom with questions for you

    I, too, live in a pretty hot, sunny area, so perhaps I can answer some of your questions.

    quote:
    1) How much sun is ok?


    Technically, none. As in, any exposure to the sun without sunscreen and hat, and preferably sunglasses, is not pleasant. For myself, I burn in two-five minutes, depends on the day. Note: Busses and car rides are a risk also. I burn on busses when I sit by the sunny side window in the summer! Sunscreen is a must in the car as well.

    However, if these precautions were taken, there shouldn't be ill side-effects to being outdoors. I've certainly gone on prolonged hikes and came out of them just fine. Remember though that if you're playing around with water, or if your son is sweating, most (maybe even all, regardless of what they say) sunscreens have to be reapplied every 80 minutes. I've gotten to the ER with second-degree sunburns in my life, and it's NOT pleasant in any way.

    quote:
    2) Did you like the beach, what accomodations should I bring, umbrella, long sleeve clothing (of course hat and sunglasses)


    Water is a prism. It focuses sunrays. Anything in the way of burns that happens underwater, happens bad. Preferably, don't let your kid go swimming without a long-sleeved shirt and shorts, and sunscreen all over anything that is not covered.

    I, myself hadn't gone to the beach or to a pool for years and years. I am not terribly drawn to water, and consider the risk not worth the reward, but that is of course individual preference. My little brother loves the pool. He hasn't got albinism, he's just very pale-skinned, so the long-sleeved shirt and sunscreen all over with reapplications throughout applies to him.

    Perhaps, going to the beach should be done in the cooler hours (before 10 a.m. or after 6 p.m.) The doctors recommend it for everybody anyway.

    quote:
    Should we move????


    I really don't think so. I've lived in the desert most of my life, and I am still hale and well, except for two or three very unpleasant incidents because of my having been an irresponsible child that got away from her parents' eyes for too long. So long as precautions are taken, your son should be fine.

    I would install some sort of blinds in the house, however... Occasionally the light gets too bright, and that could be rather unpleasant, or even painful. The house should serve as a relief.

    quote:
    4) Is hiking outside ok?


    Yep. See above.

    quote:
    5)How much son was enough?


    I shall assume you meant 'sun' here... Um... well, sunlight is, unfortunately, necessary. It's good for your bones. Sometimes I think I would ahve preferred to never see the face of it again but that might have more to do with my aversion to early mornings than to my albinism. ;-) As far as exposure to sun goes - it seems to vary with the person. For me, a few minutes, even behind a bus window, are enough for mild redness, hot slightly burned skin and hurting eyes. I always walk around with long-sleeved shirts and a hat. I try to stick to indoors activities during the sunnier hours of the day... but it hasn't stopped me from going outside for all my needs.

    I hope that helps.
    • Post Points: 5
  • 06-20-2006 12:00 AM In reply to

    • Ali
    • Top 50 Contributor
    • Joined on 02-24-2002
    • Orange County, California
    • Posts 198
    • Points 2,505

    Re: New Mom with questions for you

    I've lived in Southern California my whole life, so I understand the whole sun issue. In my opinion I would say DON'T MOVE!!! Your son will be fine. I've noticed that I've actually learned to be able to tell when I've had enough sun. I know my limits, I know when I should reaply, and I know when I've had enough. When I burn, it's always a result of my own laziness carelessness. I'm not a HUGE fan of the beach, but I do enjoy it every couple times during the summer. I just take my towel and an umbrella. They do make those half-dome shaped things for the beach which is really nice for kids. He can play in the sand but in the shade.

    The most important thing you should do for your son when it cones to sunny days is REAPLY!!! When the sunscreen says it lasts up to 6 hours, it's not true for us. On really intense sunny days where I'm in the sun all day, I try to reaply every 1-2 hours or so. I don't always do it, but I know I should. Our issues with the sun can be a pain in the butt sometimes, but there are always ways around it. The sun has never held me back from things like going to the beach, or Disneyland, or waterskiing, or rock climbing, etc. Just bring lots of sunscreen and he'll be fine! As he gets older, you'll probably have to nag him about it, but he'll learn eventually. We all find those little tricks that work for us so that we can enjoy the sun with everyone else.

    If you have ANY more questions about anything, please send me an email!
    • Post Points: 20
  • 06-22-2006 12:00 AM In reply to

    • Ali
    • Top 50 Contributor
    • Joined on 02-24-2002
    • Orange County, California
    • Posts 198
    • Points 2,505

    Re: New Mom with questions for you

    See, I disagree on the moving thing. I think you're going to have the sun no matter where you go. We can't run away from the sun, but we can take certain measures to make sure that we take care of our skin. I would bet that my brother without albinism, or my friends without albinism have been burned twice as many times as I have because of carelessness on their part. For now, it's not a "big deal" for them so they don't have to worry about it. But we are aware of it from the day we're born, so we generally tend to be a bit more cautious than everyone else. Like I said earlier, the only times I've been burned was because it was my own fault. I've had plenty of all days in the direct sun and came out perfectly fine. It's very possible to live in Southern CA with albinism....we just have to be a little more careful, but just as careful as you'd have to be in any other state.
    • Post Points: 5
  • 06-22-2006 12:00 AM In reply to

    • Julieanne
    • Top 200 Contributor
    • Joined on 06-05-2006
    • Chicago
    • Posts 42
    • Points 330

    Re: New Mom with questions for you

    Hi coopersmom,

    There's a thread in the "Parents of Children with Albinism" section of this site called "Sensitivity to Heat" that I think you'll find really helpful. I left some detailed experiences I've had with heat through the years, as have some others.

    With regard to your question, it looks like you'll get different suggestions and experiences. I'm inclined to go with Ali above. I love doing outdoor activities, always have, and I know when too much is too much. I wear sunscreen only when I'm going to be outdoors for a lenthy period of time, not on a daily basis to the office. I don't wear long sleeve clothing as a sun repellant either. I'm laughing with Ali because I can think back when I got a bad burn or two (ok, maybe five or so) and it was due to my own laziness--and they all occurred at Wet'n'Wild, for Pete's sake! Our whole group had blisters!

    I'm methodical about being checked for odd moles or cancer-ish looking things. I guess I've made an unconscious decision that I already have to live life a bit differently due to being visually impaired and looking different, and I'm not going to further be inconvenienced by missing things due to living in a bubble. Razz
    • Post Points: 5
  • 06-29-2006 12:00 AM In reply to

    • Genia
    • Top 100 Contributor
    • Joined on 05-13-2006
    • Posts 70
    • Points 710

    Re: New Mom with questions for you

    quote:
    Originally posted by coopersmom:
    So the sunglasses and hat provide enough coverage to enjoy being outside?


    No, but if you add sunscreen to the ensemble, you should be fine.
    • Post Points: 5
  • 06-29-2006 12:00 AM In reply to

    Re: New Mom with questions for you

    Hey coopersmom,
    My name is Katie and I'm 15 and enjoy being outside.I've been sunburnt almost every summer I can remember.When I was younger and would go swimming my mom made me wear a hat,tshirt over my swimsuit,and a bunch of sunblock.I absolutely hated it but never got sunburnt too bad.Although I have gone to the doctors for first-degree burns and it's not fun.Now when i go swimming I don't have to wear a t-shirt and hat but I wear a bunch of sunblock(SPF50).I play soccer and that involves being outside a lot and running so the rule in my house is one sunburn no soccer.I also think you shouldn't move unless he's getting burnt very often.I personally would like to move to California when I'm older and I hope I get to.Your son will learn to care for his skin as he gets older especially living out in CA.I don't know if that elps but I hope it does.Good luck raising your son.
    Peace and love
    Katie Wink
    • Post Points: 5
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