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Talk to me about childhood lupus

6 replies

Superbirdtrooperbird · 01/07/2018 16:17

Just that really, I posted a while back about a rash that DS had after going in the sun. GP adamant it was prickly heat, even though it was only on areas exposed to sun and piriton had done nothing to take it down. It was a phone consultation so he didnt see the rash. The only thing that worked was staying indoors, out of the sun.
The rash has disappeared everywhere but his face, which has persisted but gone down slightly. It was only around his cheeks/under his eyes and a little bit across his nose.
In addition to the rash, he's complained a few times of joint pains 'all the moving bits of my bones hurt' and being tired. He's usually a very animated little boy, but has been quiet and tiring easily for a couple of weeks. His teacher has mentioned it to me every day last week and twice he was sent home because he'd fallen asleep in class. The rash had gone by that point, apart from his face, so he wasn't having piriton which would have explained the sleepiness.
He had one episode of really reddy/orange wee last week as well, which I totally dismissed but now I'm starting to put it all together and wonder if it's something else.

I know it's easy to dismiss it as all symptoms of the hot weather, and I agree it could be, but we've had very hot weather before and he manages. He's a very slender little thing, and apart from getting a bit sweaty, heat doesn't bother him. He's just not himself at all, and hasn't been for a while but the GP I spoke to wouldn't take that as legitimate information.

I know I sound like the over-concerned mother, and I do doubt myself sometimes.

Pics above are of his face rash today, which has gone down considerably (he's not been outside for 2 days) and his legs on the first day he had the rash. You can see where it stops at his sock line!

Any opinions greatly received Smile

Talk to me about childhood lupus
Talk to me about childhood lupus
Talk to me about childhood lupus
OP posts:
loveyoutothemoon · 01/07/2018 19:54

What did the doc say about his wee?

That's not a normal reaction to the sun. It's not right either that he's very tired with joint pains. Get a second opinion.

loveyoutothemoon · 01/07/2018 20:01

I have subacute cultaneous lupus, which doesn't show in the blood.

He needs to be seen again. Keep him out of the sun, my joint pains are worse after being in the sun.

Superbirdtrooperbird · 01/07/2018 21:10

He's been indoors all weekend and seems better, no joint pains etc but very quiet and tired still, and the face rash is still there.
The doctor said 'it's normal for urine to darken when you're dehydrated, he needs to drink more water' as if I don't know how to keep him hydrated, and as if I don't know the difference between dark yellow, needing a drink wee and wee that's just a totally wrong colour. DS drinks plenty, his beloved utterly hideous Batman water bottle is never far from his side, he has a small bladder so he goes for a wee a lot and it's always a good clear colour. The GP massively fobbed me off, didn't let me finish half of what I was saying and I actually cried when I got off the phone, he was so patronising. Our family GP is on annual leave for 3 weeks so it was a locum who I hope I never have to see! I can get an urgent appt in the morning so I'll do that. I'll go prepared to be fobbed off some more and pleasantly surprised if I'm not.

Thanks all.

OP posts:
Superbirdtrooperbird · 02/07/2018 12:03

Well the GP was lovely! As soon as I said the words 'he's not at all himself' she gave me an understanding nod, and checked everything she possibly could (weight, urine sample, glands, temp, ears eyes nose and throat) and then had a good look at the rash. She even entertained my 10 pictures of various stages of the rash! She said they were actually very helpful, which made me feel like a child who's teacher has just said their homework was great 😂
More rash has appeared, and the GP sat and watched some appear on his hands and forearms while she was checking him over. She's adamant it's slapped cheek, but says for some reason his body isn't coping with the virus very well. I'm a bit dubious as he's had slapped cheek before and I was under the impression once you've had it, you won't get it again. She's recommended he takes the whole week off school to get over it as it's making him so tired, but his attendance hasn't been great this year so I'm going to see how he is tomorrow and decide from there. If he's genuinely no better by Friday I'll be taking him back as slapped cheek really shouldn't go on for 3 weeks in my opinion!

OP posts:
loveyoutothemoon · 02/07/2018 17:27

Your GP sounds confident, so you should trust what she's saying and take her advice to keep him off. His health comes first, he needs to recover, and the longer you don't give him the chance, the longer it'll take to get better.

Anxiousmumof · 02/05/2024 15:55

Hi I’m aware this is a very old post but did you ever get to the bottom of it? My dd has a rash that looks exactly like that for 5 weeks now!

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