DD is photosensitive. Help, advice, support anyone?

[mummytopebs]

DD has a few mystery things going on, she has been a mysstery since she was born. She has Reynauds, she swells for no apparent reason, she has asthma, problems with kidneys and unknown allergies/rashs etc. The doc thinks she is photosensitive. The doc said keep her completly covered, suntan lotion at all times, hat, keep out of sun 11-2. Any other advice? I am really struggling with this. Anyone any advice/experience? Thanks

Hello. I have Reynauds and I am also photosensitive to sunlight.

I don't really have much advice except to say that the best (& only) sun lotion that I have found to help is Piz Buin Anti-Allergy. Even a total sun block in other brands do not seem to work. I also take an antihistamine during peak summer months or if I am abroad.

Having said that, you really do have to avoid the sun when it is at it's strongest.
Although a bit of a pain, I think the fact I have avoided sitting in the sun for long spells has paid me back in having much younger skin than I should have for my advancing years.

Thanks Veni. What happens to you if you dont mind me asking? Have you any autoimmune disease or anything like that? Do you swell from the sunlight?

Sorry for all the questions.

DD is on permanent antihistimines any way but have upped them in this sunny spell. How old were you when this started? DD is 2 and wants to play in the garden all the time :(

No problems with the questions - ask away!

I break out in hives wherever the sun hits my skin. I didn't suffer as a child but first experienced it when I went abroad in my twenties. It gradually got worse and I now break out on sunny days over here.

It is actually quite common and you learn to manage it. My face and legs are never affected, more my arms & chest.

Although your dd is so much younger - I have found that I do not have to cover up in heavy fabrics so I can still stay quite cool. Just enough to keep my arms etc. in the shade.

I don't have any diagnosed autoimmune disease. I don't have asthma or hayfever but react to things on my skin.

DDs main reaction is on her face she only gets a slight rash on arms and legs. Her face looks like she has had acid thrown in it, but it happens later on in the evening when the sun starts to go down :* She also swells round her mouth and throat. It is very confusing, but then she has always been a medical mystery.

I am thinking that maybe I should put her in the uv sunsuits in the summer.

hi mummytopebs I'm pretty much the same as Veni really. I have polymorphic light eruption and come out in a really itchy rash on my chest mainly, but it can be all over. As you can imagine, I look gorgeous on holiday!
Seriously though, I try and cover with Piz Buin at all times, I keep covered up and I don't sit out in the sun. Other than taking regular anti-histamines and using steroid cream, I just live with it really.
I understand you can have light therapy if things become very bad, but if it doen't bother your dd too much I wouldn't worry about it.

x posts.... that's different to mine definitely, sounds more like the reaction my son has to nuts / peanuts. I'd Ask GP about light therapy I think.

I agree with Ingles2 - your DD's symptoms do sound quite different to our experiences.

If your GP only thinks it is photosensitivity, it could be something else. Is she being tested for different allergies?

Thanks for that link Ingles2. I do actually suffer quite badly on the back of my hands but that is probably because I spend all winter with my gloves on due to Reynauds! You just can't win can you

she is under various consultants and has lots of tests for various allergies, which all come back negative. It is infuriating. We go and see her main consultant after easter so will see what he says. She goes almost anaphlactic (sp) from whatever it is and we have a supply of epipens. I wonder if you can get different variants of photosensitivity?

Thanks for the link. That is very interesting and would link in to how the rash appears after the sun has gone down.

I'm like Ingles and have PLE but most sunscreens actually make it worse - I'm nowhere near as bad as OP's DD, though - mine confines itself to my arms and chest. I tend to hug the shade, keep my skin as clean as possible when it's sunny so my sweat glands don't get blocked and wear long sleeves for as long as I can without ending up with a heatrash - and stay out of the midday (11-3) sun if I can.

For your DD, OP, I'd suggest loose, cool clothes, big sun hat if she'll wear it (I hate them, so understand if she does) and maybe a gazebo or wendy house for her to play "outside" in. From 11-3, I'd do your best to tempt her to enjoy herself indoors, with the promise of playing in her special tent after that time.

And agreeing with the suggestion that other allergies could be the root cause. My brother used to look like he had 2 swollen black eyes whenever there was pollen in the air - completely different reaction from everyone else.

Bizarre question but have you put sun cream on those areas that look they've been burnt by acid before she went outside?

My DS1 seems to be allergic in someway to suncream...but it's more the reaction between the suncream and the sun if that makes any sense? I could try the suncream on him indoors and he'd be fine but once he goes outside with the suncream on where Ive put the suncream it goes bright red and lumpy(and yes it looks like he's been sunburnt).

Dr's haven't investigated it further (he's 7 now) and we've just managed it every year by finding a sun mousse (proderm) that for some reason doesn't cause the same reaction. Its used by people with excema and it's obviously got something not in it that others have which Im assuming it's what he's sensitive to but I have no idea what it is.

Im probably way off the mark but just thought Id mention it.

They did originally. think it could be the syncream but it doesn't happen straight away but a few hours after so they are thinkinf now it is something to do with the rays. Does your ds swell from the suntan lotion? Does he blister? Does it happen ad soon as the sun hits?

Hello mummytopebs - long time no 'speak'. Sorry you seem no further on with dd's issues.

I also have PLE - ploymorphic light eruption. It's always worse with the first sun of the year and settles over time as my skin seems to get used to being exposed. I use an anti-histamine called Telfast when the forecast starts to predict sun. This weeks weather has caught me out a bit so I've stayed out of it as I was unprepared. I also have a slight allergy to the cold - not like Reynauds - it's more a hives thing and it was much worse during my pregnancies which makes me think it may be hormone related. A bit like the increased senstivity you can have when you're on the Pill. PLE is often helped by a sunscreen with good UVA cover (not UVB which is what the SPF indicates)

Hello, my mum has Erythropoietic Protoporphyria(EPP) she basically turns into a huge blister if she so much as sits in a sunny window, although she can withstand higher temperatures since she started taking 6 beta-caretene pills and 1 antihistamine pill a day from april-sept, absolute nightmare for her when we were younger she would speed peg her washing out(and I mean SPEED peg 10ms of washing in 2 mins)on a normal sunny day(not scorching) then have to come inside take her rings/glasses off and cover herself with wet towels because she was literally on fire and looked as though she had been in a boxing match...awefull we couldn't do anything to help.