theshyone
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Post by theshyone on Jun 7, 2016 2:49:32 GMT
My daughter may have solar urticaria or for simplicity sake sun allergy. Hives, itching, severe pain with all exposure to UV light.
Special UV protectant clothing, special sunscreens with certain ingredients, many possibilities eliminated. Many drugs that would typically be prescribed she can't take due to her sudden Arrythmia death syndrome long qt.
looking for any help in negotiating life. It's been hell for a teen. Tips, tricks, what worked what didn't works?
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Post by Linda on Jun 7, 2016 3:04:37 GMT
I think that's what my younger daughter might have - she gets welts and itching and redness in the sun. Sweating seems to make it worse. I don't think she gets the severe pain that your daughter has so maybe not.
We use benadryl cream - or just plain lotion in a pinch (it doesnt' work nearly as well but helps keep her from scratching) - sunscreen is a must, so is staying covered but cool.
((((Hugs)))) mine isn't a teen yet so not sure on negotiating that aspect.
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kiwipea
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Post by kiwipea on Jun 7, 2016 3:48:41 GMT
It's often called polymorphic light eruption as well. I've had it since I was a baby. It has eased up over the years but perhaps that's because I stay out of the sun more. Covering up as much as possible is key, but it also helps to slowly build up the amount of sunshine exposure each spring. I remember reading somewhere that it seems to hit an affected person badly once in seven years, and the other years aren't quite so bad, and I have found this to be true. Be aware that cloudy days also has UV light. And if the skin is affected by sunlight often the eyes are very sensitive to light as well.
I had it quite severly as a child, to the point where I had to have calamine lotion on my hands and then gloves over the top of that. I would get the spots all over, from my toes to the tips of my ears. The itching used to drive me crazy. Lunchtimes were spent inside classrooms so I was out of the sun, which wasn't too bad since I'm a bookworm. At that time, over 40 years ago, my doctor knew of only one other child in New Zealand who had it. Nowdays the numbers are increasing for adults with it in particular.
It must be hard for a teen to be suddenly dealing with this. Is she used to being outdoors a lot?
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melissa
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Post by melissa on Jun 7, 2016 3:57:44 GMT
Has she seen a dermatologist for this? If not, find one with experience. Usually, they just treat the symptoms H1 blockers and steroid creams. But, if she has prolonged QT, h1 blockers are out for her. It can be treated (cured) with phototherapy which is used in severe cases which is another reason you need a good dermatologist to work on treating her. Hope she finds a solution! Had a family member who had it, but it seems that it went away or became less severe with time.
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theshyone
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Post by theshyone on Jun 8, 2016 6:56:07 GMT
It's often called polymorphic light eruption as well. I've had it since I was a baby. It has eased up over the years but perhaps that's because I stay out of the sun more. Covering up as much as possible is key, but it also helps to slowly build up the amount of sunshine exposure each spring. I remember reading somewhere that it seems to hit an affected person badly once in seven years, and the other years aren't quite so bad, and I have found this to be true. Be aware that cloudy days also has UV light. And if the skin is affected by sunlight often the eyes are very sensitive to light as well. I had it quite severly as a child, to the point where I had to have calamine lotion on my hands and then gloves over the top of that. I would get the spots all over, from my toes to the tips of my ears. The itching used to drive me crazy. Lunchtimes were spent inside classrooms so I was out of the sun, which wasn't too bad since I'm a bookworm. At that time, over 40 years ago, my doctor knew of only one other child in New Zealand who had it. Nowdays the numbers are increasing for adults with it in particular. It must be hard for a teen to be suddenly dealing with this. Is she used to being outdoors a lot? Polymorphic light eruption has been eliminated as a diagnosis. This occurs year round with any and all uv light exposure. Dead of winter is just as severe as summer. Yes to the extremely sensitive eyes. Not ever heard about seven years with it. There had been thought it might be EPP as she had orginally outbreak just before 13 but testing for that was negative thankfully. Not sure if false negatives occur though. Cloudy days, sunny days, inside, vehicles, all affect her. Thank you you for responding. |
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theshyone
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Post by theshyone on Jun 8, 2016 7:06:36 GMT
Has she seen a dermatologist for this? If not, find one with experience. Usually, they just treat the symptoms H1 blockers and steroid creams. But, if she has prolonged QT, h1 blockers are out for her. It can be treated (cured) with phototherapy which is used in severe cases which is another reason you need a good dermatologist to work on treating her. Hope she finds a solution! Had a family member who had it, but it seems that it went away or became less severe with time. She did over 16 weeks of the photo-therapy with no improvement to her symptoms. She did have Increased pain, welts, itching during that time period. we have our local dermatologist, who openly admits he is learning as he goes, he referred us to the biggest University hospital for "rounds", which all but one recommended thing had been implemented. Which we then spent 8 days in ICU attempting, which didn't help. While in that Childrens hospital we saw their dermatologist as well, and she couldn't come up with any other plans either. Long qt has been a huge hindrance in attempting drug treatments. We are attempting to find funding help to try Xolaire but it's not approved by health Canada for solar urticaria, so it's not looking promising. Desparately to find help. Not knowing where to go, to look. Testing for EPP was negative, the polymorphic light eruption was eliminated, which has left us most probably with solar urticaria. She also has this thing where if you mark her skin it rebels and there is a mark. Which with hives means any itching creates this and makes it worse. I'm drawing a blank on a name for that though. |
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theshyone
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Post by theshyone on Jun 8, 2016 7:12:28 GMT
 had been told the marks would last an hour. They were still there at bedtime. I'm drawing a blank on the name of this though. its in addition to, not part of the sun issue, just complicates it. |
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theshyone
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Post by theshyone on Jun 8, 2016 16:04:09 GMT
I think that's what my younger daughter might have - she gets welts and itching and redness in the sun. Sweating seems to make it worse. I don't think she gets the severe pain that your daughter has so maybe not. We use benadryl cream - or just plain lotion in a pinch (it doesnt' work nearly as well but helps keep her from scratching) - sunscreen is a must, so is staying covered but cool. ((((Hugs)))) mine isn't a teen yet so not sure on negotiating that aspect. Is she fair? My kid is. The lead dermatologist at the university hospital took one look at her and guessed her heritage. But any race can get solar urticaria. |
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Post by Linda on Jun 8, 2016 19:35:00 GMT
I think that's what my younger daughter might have - she gets welts and itching and redness in the sun. Sweating seems to make it worse. I don't think she gets the severe pain that your daughter has so maybe not. We use benadryl cream - or just plain lotion in a pinch (it doesnt' work nearly as well but helps keep her from scratching) - sunscreen is a must, so is staying covered but cool. ((((Hugs)))) mine isn't a teen yet so not sure on negotiating that aspect. Is she fair? My kid is. The lead dermatologist at the university hospital took one look at her and guessed her heritage. But any race can get solar urticaria. she is - not quite as Casper-white as I am but the fairest of my 3...light skin, freckles, green eyes, strawberry brown hair. On my side, she's Irish/English/Scottish heritage, DH's side is more diverse but mainly English/Dutch/French(Norman)/Scottish/Danish |
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theshyone
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Post by theshyone on Jun 8, 2016 21:20:53 GMT
Is she fair? My kid is. The lead dermatologist at the university hospital took one look at her and guessed her heritage. But any race can get solar urticaria. she is - not quite as Casper-white as I am but the fairest of my 3...light skin, freckles, green eyes, strawberry brown hair. On my side, she's Irish/English/Scottish heritage, DH's side is more diverse but mainly English/Dutch/French(Norman)/Scottish/Danish Mines 50% Swedish. The typical white skin, blonde hair, grey eyes, I think the dermatologist knew by the last name versus looking at her, it broke the ice which was good. |
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leezer26
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Post by leezer26 on Jun 8, 2016 21:47:56 GMT
View Attachmenthad been told the marks would last an hour. They were still there at bedtime. I'm drawing a blank on the name of this though. its in addition to, not part of the sun issue, just complicates it. This is dermographic urticaria. My son has this as well as cold urticaria. So far we only have to treat with Zyrtec. |
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Post by cath4k on Jun 9, 2016 1:59:51 GMT
I don't know if this will help, but I have heard that vitamin D can help. Optimal blood levels are supposed to be 60-70 ng/ml. Maybe check her levels and try supplementing with vitamin D3? I'm sorry she is dealing with that.  |
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theshyone
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Post by theshyone on Jun 9, 2016 9:31:42 GMT
had been told the marks would last an hour. They were still there at bedtime. I'm drawing a blank on the name of this though. its in addition to, not part of the sun issue, just complicates it. This is dermographic urticaria. My son has this as well as cold urticaria. So far we only have to treat with Zyrtec. Do you know if it's usually associated with the solar or cold urticaria? We we were so focused on getting a diagnosis for the sun stuff that this was largely glossed over. How does your son handle the cold? |
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theshyone
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Post by theshyone on Jun 9, 2016 9:36:01 GMT
I don't know if this will help, but I have heard that vitamin D can help. Optimal blood levels are supposed to be 60-70 ng/ml. Maybe check her levels and try supplementing with vitamin D3? I'm sorry she is dealing with that. We do D supplementation. But the actual niacin "slight flushing" was more like a blowtorch from the inside out. She literally seemed to glow, she was so red, hot, and burning. also insane amounts of Vit A (incidentally helps acne), does nothing for the solar urticaria |
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