DD been in hospital - Stevens-Johnson Syndrome or Kawasaki disease, anyone experienced either?

[DeckthehallswithFrumpyGrumpy]

DD has been in hospital with having a most distressing time. She is much much better but the final diagnosis has yet to be made. The docs started off saying it was Kawasaki disease and then talked about it looking more like Stevens-Johnston Syndrome.

I found kawasaki info more readily available from the docs and internet but Stevens-Johnston is less talked about (and what I find on the internet is all a bit American and dramatic).

Anyone have experience?

Thanks jabberwocky. Her eyes are doing well. She had a big dose of steroid tablets and steroid drops to prevent problems and this seems to have worked. We had to reduce them gradually over some days and she's off them now. We see the consultant next week and they might investigate whether penicillin had something to do with it.

Yes, that might have been it. If there is any question, I would just mark it down from now on as an allergy. There are so many alternative drugs she can take it's just not worth risking another attack. SJ can be even worse the second time, I believe.

Oh, and you might ask them if she should avoid sulfa and/or ibuprofen. I'm gettting a bit away from my limited knowledge, so not sure, but since those are known to cause SJ maybe so?

Thanks Jabberwocky, will do. I'm very concerned about how it all came about and would love some rock solid answers, however, I'm prepared for the line "we're not entirely sure....". I will definitely be extrememly wary about her having any medicines at all in the future.

I'm interested to hear you say "second time round", I want to ask the consultant if that's a possiblity. I only coped with watching her go through it because I was largely unaware of what was actually happening until it had happened IYKWIM. I think shock and adrenalin got me through and I shudder to think about seeing her put through it again.

Thanks very much for your concern.

I could be wrong about that, it's been a while since I had this in school, but I believe that, since it is a reaction to something like sulfa, etc., that it is possible to have it again.

Hi FG,
I'm a Grandmother Lurker on these pages, like to keep up to date on stuff Sorry don't post often and this is long.
But this is something I do know something about - my son had Stevens-Johnston Syndrome 31 years ago! He's now 35. At that time pre- Internet I really couldn't find any info much.
He developed really desperate itching all over his body with nothing visible. For 3 days and nights he was in a terrible state and the kindly GP told me that it was 'an hysterical reaction as you are an over protective mother!' Good one, eh?
Eventually got him admitted to hospital, was in there 4 days and barrier nursed as they were worried about impetigo as he had developed a tiny mark on his leg which a lovely specialist recognised as SJ and gradually he shed the top 2 layers of his skin, just flaked off. Very distressing, painful to touch and loads of needles for blood tests which left him quite phobic for many years.
Anyway, I was told it was probably called by a 'Strep Throat' as they swabbed his throat and he had an unusual bug in there. But in reality they were never sure what it was. I was completely shocked and very worried for a long time but he never again had any similar problem.
Sorry for length of this, just thought it might be of interest.

Hi Crescent thats really helpful, thanks for that. I always do big long posts so no problem!

Your poor boy! Does he remember much about it all now he's a big grown up? I be the scars will be with YOU forever . Its good to talk to someone who's seen it firsthand because I found the whole thing quite a shock really.

My dd was in a lot of pain too and, like you, my GP made me feel like I was overreacting. But you know when things aren't quite right. I'm so glad to hear your son had no other experiences of SJS, this has been my main concern!

We were at the hospital again today and they are pleased with how she's healed. They are not comitting to either diagnosis but she had another heart scan and it is fine so personally I think it was SJS. From what I see, they don't get the blisters or skin shedding with Kawasaki.

Either way, I'm glad its behind us and hope it stays that way! Thanks Crescent.

Hi FG, Glad it was of interest. No, my son doesn't remember it at all, so don't think he's mentally scarred . The only problem for a number of years was that he was terrified of needles and fainted each time he had to have one, but eventually that stopped. I, on the other hand, can remember it all distinctly, I was so frightened and nobody seemed to believe me, never a good feeling! The funny thing was that after he came out of hospital, the senior partner in our GP practice came to our house to apologise for them basically telling me to get lost! Good luck to you and your DD, have a healthy 2006.

Crecent are you still about? Just wanted to ask if your ds lost all his nails after? My DDs seem to be falling off!

It started with one fingernail which I thought she'd just badly torn at the cuticle but now all fingers and all toes are looking like they are going the same way. I presume its some sort of shedding the way her skin did.......

Hi

Just seen this post.

I had SJS when I was 21, not the best thing to happen to my ego, especially as a single partying girl.

It took 2 trips to the hospital and 3 GP appointments for it to be final diagnosed, by which time it had spread all over my body, inside my mouth, eyes, and more sensitive private parts. I reacted to some medication that I took 2 weeks prior to the first sign. You might want to consider whether your dd took anything else which might have caused the reaction.

Scarring took at least 3 years to clear, but children?s skin rejuvenates faster so it will most probably clear up a lot quicker. My patches got darker when I sun tanned so do be alarmed if this happens in the summer.

Also, having bowel movements was very painful so you might want to keep her motions as soft as possible. Didn't lose any nails, as far as I can remember but do remember the blisters on my feet and hands fill up with water when I showered. Other than that I made a full recovery.

Hope your dd gets better soon.

oops

meant DON'T be alarmed

Sopry FG. not been lurking the last few days.
No, my son's nails didn't fall off but think it sounds quite a possible reaction. My son did lose skin in quite a dramatic looking way all over his body.
Do hope your dd is ok? Thought you had a consultant appt?

Thanks CADS and crescent. CADS poor you age 21! and 3 years worth of scarring, it is a horrible illness. I hope its just a distant memory. Thanks for your post, its helpful to hear from those who have first hand experience.

Crescent we had our appointment but there was a mix up and we didn't see the consultant who we were expecting. The Dr we saw was a bit wishy washy i.e. I explained she has constant diarrhoea and he said some kids are just like that. I explained it wasn't normal for my dd. Keep it til it goes away was the rough reply!

I decided to called the consultant on Friday to ask about DDs nails. She said it was to be expected following a severe illness and recommended a multivitamin. She also gave me good advice concerning her diarrhoea. Said her gut needed time to get back to normal and to avoid wholegrain bread, high fibre cereal, strawberries, cherries, grapes etc (i.e. everything I've been giving her!!) and to use probiotics and lots of rice. The diarrhoea is hugely better today!

Its sad but her hair is falling out too . She has such beautiful hair that people comment on, gorgeous blonde shiny and thick. Poor wee thing. I guess its just a longer recovery than I thought.

Otherwise she's doing great, really cheery and daft again .

Cheers girls x.

Just reading this FG and wondered if you'd ever used the probiotic powder that you can add to food or drinks. You probably know already but thought it was worth a mention as might be a good idea for your dd? Have used the Solgar one, ABC Dophilus Powder Child Formula, with my grandson as he had to have a lot of antibiotics in his first year. It's totally tasteless.
hope your dd is back to full health very soon.

Thanks for that crescent. She's taking the Danone drinks very well but I'll bear the powders in mind for when the novelty wears off! And it will! Thanks for your posts.

I had Kawasaki disease and Steven Johnson Disease last December. I was out of school for all of December. I was in the Children's hospital twice . I lost 20% of my body weight. It was really rough on me and my whole family. They are both things you need to watch out for. I know someone who went blind because of Steven Johnson Disease. Watch your child for high fevers, rashes and etc.