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Original poster

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

41 replies

DeckthehallswithFrumpyGrumpy · 02/01/2006 14:16

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?

OP posts:
Original poster
DeckthehallswithFrumpyGrumpy · 02/01/2006 14:16

Have to go just now but will bump later if thats ok!

OP posts:
expatinscotland · 02/01/2006 14:20

bump

ggglimpopo · 02/01/2006 14:21

Message withdrawn

rey · 02/01/2006 14:36

kawasaki - heard of - dd of a friend of mine had it years about 10 years ago. If the discover it early enough ie by time hospitalisation becomes necessary then it should be ok from what I remember. Her dd is extremely fit and healthy now but I remember at the time there was a lot of talk about future health being compromised. I remember kawasaki info being quite easy to get hold of without the internet at the time, a help group or something. I have never heard of Stevens- johnston though. Sorry not of any real help but if I find anything more about either I'll definately come back to you. Hope your dd springs back as quickly as friend's dd did children are amazing and I remember once the worst was over it was like it had never happened to her, the parents were the ones who continued to worry. Best wishes to you all.

Christie · 02/01/2006 15:12

This reply has been deleted

Message withdrawn at poster's request.

getbakainyourjimjams · 02/01/2006 15:38

Did it follow a drug reaction? There are pictures you can compare with on google images. It actually looks really like something ds1 had when he was provisionally dxed with eczema herpeticum (although the swab came back negative they didn;t know what else it could be). He did have a fever though, his skin just blistered and peeled over his whole body, and had that kind of chunky bits missing as they have in the photos and pits as well. Other doctors couldn't dx it, but the dermatologist did immediately.

Has a dermatologist seen her? I just wonder whether its worth requesting a dermatologists opinion if they are unsure of the diagnosis.

DS1's skin was as bad as the ones on the photos and it completely healed (I was worried about scarring at the time- none at all).
Hope she's feeling better soon poor little thing xxxx

Potty1 · 02/01/2006 15:45

I know of someone (through an online CHD support group)whose daughter had Steven Johnsons syndrome as a baby. CAT me if you like and I'll try to get in touch with her.

Hope dd is much better soon.

hornbag · 02/01/2006 22:42

I had never heard of SJ Syndrome until recently. An ex-work colleague had it following a course of medication for another problem.I was told that the skin blisters as if it has been severely burned and it is apparently caused by the body responding to the medication.
She was in a burns unit for a while, very poorly , but is now home and recovering well.

Hope your DD is ok

Calmriver · 02/01/2006 23:02

bump

Calmriver · 02/01/2006 23:17

bump

robinpud · 02/01/2006 23:22

A friend's daughter developed Kawasaki disease last xmas, then aged 3 now nearly 5. It was misssed for a long time and didn't get a correct diagnosis until her fingers got blisters at the ends. Until then they had told her it was german measles.
Goodluck- hope your dd is soon better.

Clarinet60 · 04/01/2006 17:12

My friend's DS had Kawasakis aged 5, but it wasn't diagnosed in time and it left him with aneurysms in his coronary arteries. If the diagnosis is swift, treatment is simple and curative. Presumably, her consultants have treated her with gammaglobulin just in case?
CAT me if you want any research papers on Kawasaki.
(I don't know anything about SJS)

robinpud · 04/01/2006 17:40

didn't want to say that my friend's daughter also has aneurysms..

Original poster
DeckthehallswithFrumpyGrumpy · 04/01/2006 17:50

Thanks all for your posts, all helpful. She is out of hospital now after 6 days (over xmas, broke my heart for her but the main thing was getting her better).

They diagnosed kawasaki at first and treated her accordingly with an immunoglobulin infusion and huge doses of asprin over 24 hours to help prevent heart complications, luckily her heart scan after showed good results. Her rash and itch and burning blisters (some on the soles of her feet were the size of about 3 or 4 fifty pence pieces) then led them to the SJS possibility and therefore potential complications to her eyes. However the consultant said the immunoglobulin would probably have helped as well. We go back to the consultant in two weeks for a chat about the final diagnosis, the possible cause (penicillin for tonsilitis? or just bad luck?), and the future (could she get this again? could my other kids be likely to get?). The eye hospital today were pleased and we go back in 6 weeks and we have the skin hospital tomorrow.

She is pale, tires easily and still shows all the signs of her ordeal. The thing that was hardest was that the hospital made her a sticker chart for rewards each time they took blood or something else nasty had to happen - it was big and there is hardly a space on it AND we didn't put stickers on it every time.

I thought life was difficult (dts are 17 months, dp works away most of the week) but now I'm just grateful to see her smile.

Thanks girls, your infinite support (over the months, not just this episode) has been invaluable! Its been a ride and I think its time to book a holiday for the summer!

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Original poster
DeckthehallswithFrumpyGrumpy · 04/01/2006 17:52

I'm glad I went with my instinct and went to the hospital and ignored the GP who after 3 visits and 3 phonecalls said "I don't think its anything sinister, what would you like me to do?"!!!!!!!

At the time she was showing all the signs of meningitis!

Early treatment I think was key to how she looks now.

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hornbag · 04/01/2006 19:46

Just read your up-date - I'm glad your DD is out of hospital. She must be so brave to have gone through all that, and over Christmas too.

And as for you, you must be exhausted by the whole experience, and with 17m twins as well (I have an 18m old DS as well as my DD and its physically hard work at that age isn't it?).

I hope you get the answers you're looking for from the consultant ( and the holiday you deserve in the summer)

robinpud · 04/01/2006 20:29

So glad to hear you are all at home now. It will take your dd time to recover her strength so hope you can celebrate later on. Keep us posted.

Clarinet60 · 05/01/2006 11:14

Sounds like you had good treatment once you got past the gp. The immunoglobulin just in case is a Godsend. My friend's son had a wishy-washy GP and one consultant who wasn't sure it was Kawasakis and one who was. They had to wait until the one in charge had gone home, so that immunoglobulins could be given, which saved his life but too late to prevent heart complications. Sounds like your treatment was well in time.

pepsi · 05/01/2006 11:37

My friends little girl had kawasaki disease some years ago, she was in hospital for a bit made a 100% recovery and is now a happy teenager.

Original poster
DeckthehallswithFrumpyGrumpy · 05/01/2006 16:35

Girls you're all lovely, thanks so much for your posts. I wish I'd had access to a pc in the hospital. Skin hospital said not to come back (yahoo!) and they had such great nurses too! We see the consultant on the 16th and I'll post how we get on. It good to spread the word about such illnesses so maybe we can prevent some poor wee soul suffering too much for too long before diagnosis, we've been lucky I think.

Guess its time I changed my Christmas name back now! Time to get my frumpygrumpy hat back on . Oh, and the bar is nearly open .......!

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Original poster
DeckthehallswithFrumpyGrumpy · 05/01/2006 16:38

Hornbag, totally agree about the physical, they are just balls of energy, with wings! And I'm sure my dd couldn't climb on the table at this age!!

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Original poster
DeckthehallswithFrumpyGrumpy · 05/01/2006 16:40

Once I get started......

Droile, love to your friend and her son. Thats rotten and I wish it was different for them. I feel blessed.

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maddiemostmerry · 05/01/2006 16:45

Just seen this. I am glad your little on is home.
My ds was admitted to hospital with suspected sjs a few years ago. We were also lucky as it wasn't sjs, but was still an allergic reaction to penicillin. He had vomited up the antibiotic after first dose and then developed a haemorraghic(Sp?) rash.

FrumpyGrumpy · 05/01/2006 22:59

Sorry, just bumping on a late night sweep to see if anyone has experience......

jabberwocky · 09/01/2006 19:03

Just saw this FG, how are her eyes? With SJ you need to keep them well lubricated. Do they know what brought it on? Sulfa drugs or ibuprofen can do it.