My son - photosensitive rash? : I am so worried... - LUPUS UK

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My son - photosensitive rash?

Wendy39
Wendy39

I am so worried.

My 13 year old son has come home from school with a rash all over his arms. He wore a short sleeve shirt to school today and it’s been sunny.

I guess like all Mum’s with lupus, every time something happens to them, I think oh my goodness, I’ve given them lupus. They all have dry skin. My eldest gets hay fever which is how I started. I had allergies and terrible dry skin as a child. But daughter gets recurrent UTIs. So it’s always on my mind, along with the nagging guilt.

But my middle boy had a rash on his legs last week. I’ve also noticed he has sores on the tips of his ears, crusty. I had those from the sun when diagnosed.

Then today this. He said he had it this morning before school. I didn’t notice. He’s been for a long cycle ride with my husband yesterday and sat outside for lunch and then food at home in the evening.

So this rash has got worse today at school, again outside at break and lunch.

I hadn’t mentioned it to my husband. I was scared to say it out loud. I tried a couple of times but wimped out.

But this rash today is bad and I think it’s photosensitive so I’ve messaged him in work - he spends his days in meetings so wouldn’t answer his phone anyway.

We’ll have to talk tonight.

I haven’t told my son what I think, that’s it photosensitive as he is a hugely anxious child and worried about his body, school, tests, growing up, you name it he worried, etc already.

I’ll take him to the GP tomorrow.

I am so scared for him. I feel sick.

What do you think of this rash?

Wendy x

36 Replies
oldestnewest

Gosh that looks sore 😳

I think you have every right to be concerned.

How does he feel in himself?

I think you may need to prepare yourself for the usual quick fix from Gps with the old ”its eczema ”

I'd push for his bloods to be done, as you just don't know and these autoimmune diseases do tend to follow in the bloods although not necessarily the same one.

X

Wendy39
Wendy39 in reply to Lisalou19

It’s all up his arms and all over his hands. I’m going to have to tell him something before I take him to the GP, as he’ll obviously be there and hear me tell the GP. It’s my worst nightmare, as a parent. Thank you for replying. xx

Lisalou19
Lisalou19 in reply to Wendy39

I often hear myself saying that the experience I've had has made me more aware of my childrens health.

Don't see it as a nightmare, see it as your knowledge and motherly instinct kicking in at time when it needs too. Xx

I’m really sorry to say that the rash does look like it’s been caused by the sun. I had rashes similar to this for many years before I finally got the diagnosis of scle. At least you are much more prepared to deal with gp as you probably know far more about this than he/she does. I hope you get a sympathetic hearing and your son is ok.

Wendy39
Wendy39 in reply to Barbara17

Thank you for replying. I’ve given an account to Panda below. It is UV rash. Hoping it polymorphic light eruption and nothing else. Only time will tell. Best wishes, Wendy

I'm sorry Wendy, that looks like a photosensitive rash to me also. But it might not be!

When I got meningitis I had a much more severely spotty form of that rash, but the thing I noticed most was how all the energy had drained away from my limbs. It might be worth asking him if he feels like that too. Or if he feels nauseated in the sunlight. That might give you more of a clue.

Good luck at the doctors. If it is Lupus, knowing that as early as possible is a good thing. Lulu. Xx

Wendy39
Wendy39 in reply to Lulutopical

Hi Lulu

It does appear to be a UV rash. We’re hoping that it’s a polymorphic light eruption thing, rather than anything else. He’s been tired but nothing else to note. Only time will tell.

Thanks for your good wishes

Wendy

Hidden
Hidden

Rashes are very common especially in children. You need to bear in mind that association isn’t causation, it could well be coincidence that the rash has appeared when it’s sunny. As with all rashes the most important thing is how your son feels in himself.

By all means take him to the GP but remember that Lupus is a rare cause of rashes, to insist on a full auto immune blood panel in the absence of other sign and symptoms probably isn’t realistic.

There is a very common cause of photosensitive rash detailed here, polymorphic light eruption, the description sounds similar.

nhs.uk/conditions/polymorph...

Dry skin and hay fever are also incredibly common conditions.

I understand your worry and concern, I have 2 children with autoimmune disease and a strong family history of it. I do think we owe it to our kids not to project our fears onto them, why not just take your son to the GP and see what they say, is there anything to be gained by worrying him, perhaps unnecessarily, beforehand?

Wendy39
Wendy39 in reply to Hidden

Hello

Thank you for taking the time to reply.

I have 3 children, aged 15, 13 (very nearly 14) and an 11 year old.

I am far from a neurotic mother.

They have barely been to the GP.

And I certainly wasn't going to barge in and insist on a full panel of lupus bloods.

It looks like it is definitely a UV rash. We hope it's like you said, a polymorphic light eruption, as the start of the summer sun, but only time will tell.

His rash is exactly like mine before I was diagnosed in 2013, including the dry, crusty sores on the tips of his ears and inside too.

The GP handled it very well and I have now had a conversation or two with my son about what that means. He is far from stupid, he made the connection himself and asked me about it. He knows how photosensitive I am.

See my full response to Panda below.

As far as I am aware, my history of allergies, asthma, headaches, hypermobility and eczema etc are all very relevant. Many here have a similar history and I thought many lupies journey's set out with various allergies / intolerances etc and the numbers of those grow as you get older. Obviously having hey fever doesn't mean you'll get lupus but it can be an indication if you have other symptoms brewing too. For me the headaches from the age of 12, growing pains etc all turned out to be warning signs along the way.

I will be monitoring it now and making sure he covers himself with sun cream.

Thanks again

Wendy

Oh Wendy, completely understand your fears. I think the fear of our children getting a disease like us when we know quite how awful it can be is absolutely the worst feeling. BUT children get rashes for all kinds of reasons. Lupus is rarer in that age group and in males, so although possible it’s much more likely to be something else. Worth a visit to the GP but I’d avoid telling your son any possibles. You can always leave him in the waiting room whilst you share your concerns with the GP (I’ve done that before,told my son I need to have a quick period chat with the dr first - that keeps him out!)

I do empathise completely. We had very similar a few weeks ago when my youngest had a mouthful of ulcers very like mine, which on top of the varying alopecia (sometimes no hair at all) he’s had for years and regular fevers made me feel he was ticking a lot of lupus criteria. I think we sometimes are more aware than other parents, which is good for our kids because we’ll not miss anything and be tiger mums if they need diagnoses and treatment but bad for us because we can’t be blissfully unaware like chronically healthy parents.

Is he feeling poorly with it? Xx

Wendy39
Wendy39 in reply to Melba1

Hello

How are you?

Thank you for replying.

I am pretty sure it’s a photo sensitive rash of some description.

I’m going to check it out in the morning and see how it looks.

I’ve asked if he thinks it gets worse in the sun and he said yes, so I’ve left it at that.

I asked him if he felt unwell and said just thinking what it could be, you know measles, mumps etc, the usual childhood stuff - to him. He said I don’t feel unwell but I am tired. He’s been saying that all weekend but then he worked two shifts (he washes up in a cafe) and did a bike ride.

He often says he aches but he’s 13 and plays rugby, so I’m never sure with that.

I know it will probably be something else, but because I’m pretty sure it’s photosensitive rash of some kind, I did freak out.

When I was diagnosed it was one of my first questions, “what about my children?”

Sorry to hear about your son. It obviously plays on your mind too. Like you say, because we know how crap it is, we’d do anything for it not to happen to them.

Anyway, I have calmed down. I haven’t alarmed him. I’ll see how it looks in the morning and take it as it comes.

I did photograph it earlier.

Thank you for replying. It has helped. I really try not to be neurotic with them and think I generally do succeed at that!

Wendy xx

PS I will reply to your email! x

Melba1
Melba1 in reply to Wendy39

Oh it’s an awful feeling isn’t it? All 3 of mine have got signs (the twins were recently diagnosed with EDS so connective issue disorder and autonomic issues) The philosophy I try to have is that they should have the most active best life possible and if they do get one of these diseases then mums like us are very well placed to get them the best care possible, and be extremely bossy about it if necessary! Obviously I mean assertive 🙄😂

I can tell you’re a great mum (and wow great 13 year old with a job washing up already!)

It does look and sound photosensitive but lots of benign conditions can be too so fingers crossed xx

Wendy39
Wendy39 in reply to Melba1

Hello

Thank you for your kind reply.

I am sorry to hear about your 3 children.

It's a very difficult thing to deal with.

My mum told me when my first was born and he was readmitted to hospital just a couple of weeks old, that as a mum you will feel guilt about something or another, every day of your life from here on. That's being a good, conscientious mum.

I have replied in full to Panda below. I'll be keeping a close eye on him now and hoping that these anti-histamine and steroid cream work their magic - that's it's a one off and not a long term thing.

And yes, both my boys have jobs this summer. Well, they started during the Easter holidays. Living by a number of seaside resorts, many of their friends had jobs last year and they got envious of the money. So they both got jobs this year. Washing up. They both have goals they are saving for and are well motivated, offering to cover extra shifts etc. It's been very good for them already. My eldest is quite quiet and it's bringing him out of himself. Luckily they both have lovely work colleagues and no temperamental chefs to deal with and we've had good feed back for both of them. My husband and I both had jobs at that age and it taught us a lot of life skills.

I'll email you later.

Wendy xx

Does it look like your rash? Not like mine. Thete so much variation...Just thinking when you had or have a rash on the nap of your neck... Fingers crossed its a form of heat rash, looks itchy too. Find out if it feels hot/warm too (if you haven't already run through a list).

Hope all is well tomorrow & it calms down...hug ml

Wendy39
Wendy39 in reply to maggielee

Morning

Yes, it looks very similar to my arms and chest and back after my holiday in Turkey in 2013, before I had a diagnosis or knew anything about photosensitivity.

GP didn’t know what mine was and prescribed 20mg of steroids for 5 days, which cleared it up and then of course it came back.

Going to monitor him now, he’s wearing short sleeve shirt again today. And I’ll try to get a GP appointment for their opinion.

Maybe a steroid cream will work for now. Don’t want it to get infected.

Looking forward to seeing you later this week.

Wendy xxx

Wendy39
Wendy39 in reply to maggielee

Lovely to see you both today. xx

maggielee
maggielee in reply to Wendy39

You too...enjoy time with your family hug m

I have this he needs 50 factor sun cream wear hat sun glasses ect cover up note else you really can do

Wendy39
Wendy39 in reply to Shellys22

I have taken him to the GP and it is a photosensitive rash of some description. He's only 13. I couldn't just leave that. The sores were red raw in places and so there was a risk of infection. He's on antihistamine and has a steroid cream. He does wear factor 50 normally, just hadn't used it this last weekend, as it's only been 15 or 16 degrees here and quite cloudy. I've ordered him some Ego Sun Sense to use from here on.

poor you i hope you get an answer soon. has he been near any plants or allergic triggers. , Lou xx

Wendy39
Wendy39 in reply to louise-a

Hello. I have replied to Panda in full below. Between the Nurse and the GP we have discussed every possibility but it does appear to be a photosensitive thing. Fingers crossed it is a one off now and clears up for good. xx

I also get severe anxiety thinking that somehow it will be my fault because of my faulty genes. My father has lupus and he has never felt guilty about having me -which is really a healthier attitude(even though we disagree on many things lol). We have to remember that so many healthy parents have kids that are not--there are so many kids with developmental disorders at my kids' school--while the parents are all top 5% income ,careers , numbers of phd's and social graces--there are NO guarantees...and even if we are not religious every child is a gift and THEIR OWN PERSON--not an extension of us--either for good but ALSO for bad ie health....many kids can be sun sensitive but not all will develop lupus...wishing you the best!

Wendy39
Wendy39 in reply to NewEngland3

Hello.

I have read your reply a number of times and haven't been sure how to take it?? I think you were well meaning.

I may feel guilty about passing on my very dry skin to all 3 and my hey fever gene to my eldest etc but I would NEVER feel regret at having our three gorgeous children. They are our whole world.

Guilt and regret are totally separate. No one has ever suggested or implied that I might regret having my children because of my lupus!

I didn't know I had lupus when I had them, I was diagnosed 5 years after having the youngest.

If it wasn't for them, I might not bother getting out of bed in the mornings, on the bad days. Giving them the best childhood and start in life that I possibly can, is my main goal in life. And I actually manage to hide many of my symptoms from them most days.

As I said to someone else here, when I had my first my mum told me that as a mum you will feel guilt about something every day for the rest of your life. That's being a good parent. You want to do the best. I have never met a parent who has never felt guilt for anything about their children ever.

I have explained the full GP visit to Panda below and it appears that it is photosensitive rash - UV reaction. So I'll be keeping a close eye on him to see how this goes. Hopefully it's a one off and the rash will clear up.

Wendy

NewEngland3
NewEngland3 in reply to Wendy39

Wendy,

Thank you for replying. I think I was writing the post more to myself than to you. I am really sorry if it came off negative! I too have 3 kids and actually had them in my 30s--while i was dg with lupus in my 20s. I do get bad anxiety about something happening because of "me"--as you said the mommy guilt-- but am really trying to get out of that mindset. I have just noticed that my friends that don't have chronic illness are much more relaxed when their kids get sick--while I am in a state of panic. I am trying to be more relaxed and not assume worst case scenario's. It has been very hard :-) .

PS I hope your son does well!!!

It might be but my suspicious scle rashbis nothing like this. It could be PLE .. a reaction to the first rays if sun of the year. Last year I had something similar and I sent my specialist dermy a picture and he said it was that. He said 50% of people with it end up with some sort of CTD but 50% dont. This was in Spain during a very very hot day where I was unable to avoid th midday sun although I was covered in suncream. Good luck! Hope it's nothing!

Hello

Yes, I don’t think it’s either of the two distinctive types of SCLE rash. But it is very much like my photosensitive rash prior to diagnosis. It has almost like blisters in places.

Of to GP soon to get it checked out.

Thank you

Wendy

Hi Wendy,

I sure can understand how that would give you a scare, particularly to a mom with SLE. And all of what that means. I'm just wanting to check in now and see if you've had the doctor's appointment and what your GP said? Also wondering how long the rash lasted? Or if he still has it?

Take Care,

Panda x

Wendy39
Wendy39 in reply to panda2

Hi.

That is kind of you.

Yesterday there were no doctors appointments left and we were sent to the Walk In Clinic next door. Where they said, we don’t deal with children’s rashes, that’s definitely a GP appointment. But they agreed to check him over. Blood pressure, pulse and temp all OK. She confirmed it wasn’t meningitis which I knew already. She agreed definitely an allergic reaction but to what? She asked me if my rash was like his and I confirmed it was just like it, before I was diagnosed. But now I don’t get a rash as I cover etc. She said he definitely needs a GP assessment tomorrow. Give him antihistamine tonight.

We have an appointment with GP at 2.50 today. It’s all locums at that surgery now, no permanent GPs and health board have taken it over to run, otherwise it would have closed completely.

I’ll update you when I can.

Thank you very much for thinking of us, very kind.

Wendy x

Wendy, I've been out much of today and have just seen this. How did today go? I know what it feels like when you're living at the surgery! But when it could possibly be your child too, I can only imagine your distress. So so sorry!

So I take it the rash did not leave within 24 hours? There is quite a bit of hope it could be other things if it goes within 24 hours.

Thinking of you.

Panda x

Wendy39
Wendy39 in reply to panda2

Hello again Panda

Well, once again we went through all of the possibilities.

He has dry skin and dry lips, but this rash is not eczema.

He didn't have meningitis, measles etc etc.

It was only in sun exposed places, but he had worn shorts over the weekend, no rash on his legs, His body was covered with a t-shirt, so rash rash there. He has a little on his neck.

Just arms and hands.

It wasn't from the hot tub, as the area of rash didn't indicate that and he'd been in the hot tub hundreds of times before.

He'd played football in the field at the weekend, but the grass had been cut a few days before and so was really short.

He's never had hey fever.

He did have runny or red eyes. He wasn't sneezing. His tongue wasn't swelling or his throat.

We talked about washing products that I use and what he uses on his skin - Aveeno - they all do the same as me.

We agreed that it was definitely an allergic reaction to UV.

(The GP did not ask if it was like my rash, but this had been discussed with the Nurse the day before. I had a brief chat with my son before the GP appointment about it being UV and he'd said do you think it might be lupus, he'd handled it very well and I obviously downplayed it. I told him that even if it was a UV rash that didn't mean he would get lupus, that it didn't work quite that way. The GP did however make good eye contact with me at times, as if to acknowledge what I was thinking, he knew and was being thorough if that makes sense - the receptionist had put in her notes for the appt that mum has SLE and is photo-sensitive).

Anyway, I asked him if it could be a type of polymorphic light reaction and he said yes, it could well be. His skin has been exposed to a good dose of sun over the 3 days, Friday, Sat, Sun - rash starts Sunday night as a reaction. The rash should clear up with treatment. BUT monitor it. Make sure he wears sun cream etc. He is strawberry blond and so does have to be careful anyway. But he knows that and in summer months takes high factor sun cream to school to use at lunch times.

It doesn't look like a prickly heat or heat rash.

He asked if he's generally well - yes. Hasn't been to the doctors for about 5-6 years. He gets tired and he aches - but then he is a very active 13 - nearly 14 year old - he wants to be fit and healthy, he plays rugby and he's full on contact now, so that can hurt and he aches, he cycles and plays tennis etc. He's also growing. So tiredness and aching are difficult to pin down to anything.

He's given us 30 days of an antihistamine that I have never heard of before, it says amongst other things it treats urticaria. Fexofenadine hydrochloride 120mg. And a steroid cream.

He's to use no perfumed soaps etc. Stick with Aveeno etc.

And let's see. Keep our fingers crossed. It's just a waiting game.

He's taken 2 tablets now and I can see that along with the cream, it is calming down, but it's still there.

Thank you for your concern and chasing me up, I am grateful.

Wendy x

louise-a
louise-a in reply to Wendy39

Fexofenadine is my histamine i find it good. Hope he feels better, Lou xx

Lisalou19
Lisalou19 in reply to Wendy39

sounds like a very good appointment Wendy.

Fingers crossed the medications work for him.

xx

Wendy39
Wendy39 in reply to Lisalou19

He was very good. I was VERY surprised. My heart sank when I realised that the appointment was with him and was prepared to have to take a stronger stance - this GP was the reason that I left the practice myself not long after being diagnosed.

I have everything crossed. x

Lisalou19
Lisalou19 in reply to Wendy39

yikes, awkward moment. They say everything happens for a reason. Maybe this GP is more mindful now and for that reason you were meant to see him. xxx

This is a good and thorough report Wendy! (Even if still concerning for you.) Really good to hear that the GP was getting all the right information from you. And you already know so much about how these UV reactions work and sometimes their deeper causes due to your own experience, so you have much to lend to the diagnosis process. Would be lovely if it was a one-off! But we unfortunately know better than that... And even it it turns out to the be the case, this has alarmed you and the hyper-vigilance will probably be there for some time anyway. Really sorry it's yet another level of this disease getting at you.

Like louise-a, I was prescribed Fexofenadine too when I was getting urticaria. It is one of the strongest antihistamines out there. And is apparently very effective for urticarial rashes. I, unfortunately, could not tolerate it as it was too strong and made me extremely light-headed and nauseous, but that doesn't happen to most people. If it does happen to your son, they can give you different antihistamines (sometimes just upping the amount he would take a day). And sometimes they will mix this with Ranitidine. Sounds weird as it is a reflux drug normally, but it has to do with the H1 and H2 receptors, that make us react allergically. Here's a little blurb on it incase you might want to ask the GP about adding Ranitidine if antihistamines don't work on their own.

ncbi.nlm.nih.gov/pubmed/190...

Looks like you've got a really good handle on things and glad you've been attended to well.

Panda x

ps. Looks like I will be getting that light testing in Cardiff we spoke about a week or so ago in one of my posts. There will be a referral in the next couple weeks should I not test positive for a Porphyria (which will more than likely be the case). So I'll keep you in mind if it seems to give any direction worth pursing regarding light sensitivity.

Wendy39
Wendy39 in reply to panda2

Thank you so much for the advice and tips. So useful to know. I take Ranitidine as a stomach protector and didn't know it had this use too.

Definitely let me know about your light testing and how this all progresses. I have a few photo-sensitive lupies in my group and always good to keep abreast of what tests and treatments are being offered in the big smoke!

Thank you again. It means a lot. xx

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