Staphlacochal scalded skin syndrome/ advice please

[rosebea]

Hi,
I've just spent a hellish two weeks in hospital with my little girl (3) she had something called Staphlocochal scalded skin syndrome, for anyone who doesn't know what it is (sorry to anyone who's squeamish) it's a bacteria that get's into the system through a tiny cut and lets off toxins that sheer off the top layer of the skin. My daughter had one of the most severe cases the hospital had ever seen which meant that she lost about 75% of the skin covering her body. By lost I mean that where ever her skin touched anything including itself it peeled away so we couldn't touch her, kiss her or hold her. To her it was like being submerged in boiling water, even though she was on morphine she screamed through 5 days and nights until it was bought under control. It was the worst thing I've ever been through.
The reason I'm writing this is because I'd never heard of it and when her skin started to peel I took her to an out of hours GP who patromnised me and didn't examine her properly, he told us to put her in a cool bath (which we now know did a lot of damage) and sent me on my way, we took her back the following day & I was told that it was "just a virus" when I questioned him as to which virus's did this because I didn't think virus's caused reactions like it, he told me I was paranoid and niave and sent me home again. Two hours later we had to have her taken by ambulance and they said that it were lucky we bought her when we did. I'm not going to carry on cause it's making me upset but the whole reason I'm writing this is because I don't want anyone to go through what we've been through.
I know we should have taken her earlier but it progressed quite slowly until the sunday evening which is when we rushed her in.
please don't post telling me I should have taken her to the hospital sooner because I know that and feel awful.
sorry for the lengthy post but I needed to just get it all out.

Also meant to put at the end that any advice from anyone who's child has had it would be greatfully received because her skin is starting to grow back and is splitting and itchy.

what a terrible experience, you poor thing,
how is your DD now? is she back home?

the main thing is that you did take her to hospital when you did, and that you had tried to access help earlier but unfortunately accessed poor help.
which out of hours was it?

it must have been hell to watch your daughter suffer. surely it is possible to complain about doctors who patronise patients. my aunt had the same thing done years ago when she took her dd to see a gp to be told it was 'just a cold'. it turned out to be meningitis and her dd spent 2 wks in a coma. early intervention in both cases would have made the problem less severe.

She's home now, we still have to give her loads of meds and rub loads of lotions and potions on her though, we have nurses that come in to help out.
She's getting back to normal in herself, she's just as bossy as she ever was.
We called NHS direct who took two hours to call back but were very helpful when they did call back. It was the out of hours GP in the Wyre Forest/North Worcestershire area so any local moms using the service (sorry to sound like I'm preaching ) remember that instinct is just as and some times more accurate than qualifications.

the instinct thing is vvv true and all health professionals should listen to a mum who knows something is not right.
i hope she makes a full and speedy recovery, you must have had a dreadful few weeks

Hi rosebea, sorry to here your dd's been so ill. my dd has also just been in hospital with ssss. I'd never heard of it either. Awful awful condition my little one is now almost all healed like your approx 75% of her body was affected. Don't know anyone else who has ever heard of it either. Just out of interest did your little one have internal swelling as well, and did she loose any fingernails. Two doctors i saw thought my dd my have stevens-johnsons syndrome, which is very like ssss but they didn't take skin samples so i guess i'll never know. I really hope your dd gets over it quickly, please don'nt blame yourself for not taking her to hospital sooner you weren't to know, the same happened with us it took two days to realise it was serious. ((hugs))

Hi carol,
No she didn't loose her finger nails, the only places she wasn't affected was her hands and feet. I think the worst thing for us was when she lost the skin from her eye lids and they glued shut. It is truely an evil illness. She still has some swelling her tummy is still swolen and her vagina. They said it may take a while for that to all go down. They couldn't make thier mind up with us if it was strep based or staph based because her mouth blew up as well but they didn't mention stevens-johnsons syndrome.
Hope your little one is ok too. Mine is ok, we just can't seem to stop her scratching now that the skin's growing back! (if there was a tearing my hair out smilie, it would be here)

hi rosebea, thanks for your reply its interesting to talk to someone who's been through it as it seams quite rare. I think it will take us longer than our little ones, to get over this truely horrific illness. Hope you little one stops scatching soon poor love.

Hello rosebea and carol3. I am so sorry to hear about your poor little ones having SSSS, but glad to hear that they are both on the mend. My daughter had this back in July when she was just 9 days old - at this point the midwife was visiting every other day and we took her to the GP (who specialises in skin conditions) twice before we all became aware that something was terribly wrong because so much skin was coming off. I can't complain really, because I don't think they weren't taking us seriously - I just don't think they had any idea what it was, but then again I do feel cross that they didn't act more on it being something they couldn't explain - if that makes sense. In the end all but her forehead and under her hair was affected and we ended up being rushed from our nearest major hospital to Great Ormond Street, because the local hospital didn't feel they could cope. As you mention, we couldn't even touch her, let alone cuddle or kiss her. Feeding her was really difficult as they couldn't secure the tube that went down into her stomach with tape on the skin, as they normally would and intravenous feeding was causing problems to her protein levels (because she was so tiny and needed milk). It was just the most terrible fortnight of my life, especially so soon after an emergency caesarean and with a toddler at home several miles away. It is so scary when you are relying on medical professionals who clearly know nothing about this disease, and it made so much difference when we arrived at Great Ormond Street and were being looked after by specialists who had seen the condition before. I do worry what effect all that pain so early in her life might have, and also the huge amount of antibiotics and morphine she had - but I guess that's normal 'anxious mother' stuff! She developed quite severe reflux around this time too - which is quite early for it to start, so I wonder if that's linked also. Your children are a little older - what sort of things do they remember about it all? It is good to ramble on to people who know what it's all about. Best wishes to you both and your brave little ones.

Hi, My 2 year old Son also spent 2 weeks in hospital in July 08 with SSSS. He was very poorly. He has made a full recovery but there is still alot of redness around his bottom area where I think it will leave a big scar. I am just so paranoid that he will get it again, the Dermatologist say that he wont, but they dont seem to know alot about it as it is so rare. Has any one else been told they wont get it again? We are off on holiday in September but I am having second thoughts, Im scared that the sun or sea etc could trigger something off. I wish I could switch of from the worry but I cant!!!!