my 19 year old son had steven johnsons syndrome
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my son was diagnosed wrongly he was said to have chickenpox, he was in so much pain and had legions all over his body, in his mouth as well ,he had to drink through a straw and could not eat for 2 weeks, he was so distressed, it was awful, he had just got over a bout of measels and also had taken a body building supplement, the whole family had had a bad case of gastric flue, one of these things probably caused it, the hospital did not diagnose him with steven johnsons syndrome for a week after the first visit to casualty,prescribing him the wrong drugs and creams it was the a nightmare, i looked\\after my son and he got better gradually, but still has all the scars from his episode 4 months later, and on 2 occassions there have been tiny spots come up again that have not manifested into anything he has had them come up again today and we are just waiting to see what happens, hopefully it will stop again as soon as it started, i dont know why but would be extremely happy if anyone has any advice or a number for a specialist in this subject as the local hospital consultants dont seem to be able to offer me any more information as they don,t know themselves.
0 likes, 7 replies
Robert_Beale
Posted
May i reccomend a few web sites and other things.
1 wear medic alert bracelt
2 wear a medic alert neckless as well with a flash drive attched fao of doctors (on mine i have a information on SJS for doctors)
My prayers and best wishes are with you
Regards Robert Beale
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Robert_Beale
Posted
I hope all this helps you.
Look forward to hearing from you.
Regards Robert beale
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Robert_Beale
Posted
May i reccomend a few web sites and other things.
1 wear medic alert bracelt
2 wear a medic alert neckless as well with a flash drive attched fao of doctors (on mine i have a information on SJS for doctors)
3 use a web site www.sjsupport.org ( very good site for information)
4 send an email to join a group at StevensJohnsonSyndromesupport-subscribe@yahoogroups.com it is free and you can ask any questions and get answers from people that have been through what we are going through.
5 Buy a copy of Understanding Stevens -Johnsons Syndrom & Toxic Epidermal Necrolysis in hard copy and also download a copy and put it on the flash drive that he will wear ( chapter 5 is for medical personell) its available from LULU at www.lulu.com.
6 look on this site at https://patient.info/showdoc/40002155/
If you require any more information or would like to ask any questions please contact me
My prayers and best wishes are with you
Regards Robert
Guest
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Guest
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Guest
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Hello
My husband who is just 70 has just come out of Hospital with SJS
He has huge blisters that came up on his feet over the space if a few
hours, his hands, and eyes were affected. The blisters are the size
of a tea cup saucer and we have been discharged from hospital with
myself only nursing him, he was in hospital for 15 days and the blisters
are all over his bottom kneeds and under4 his arms. I have never been
informed that he had SJS only by reading his discharged note I found
it out. The discharge note says he has an allergic reaction to penicillian!
which he has had in the past!
He is under a dermatologist and the treatment his washing in water and
a steroid cream, and also he came out of Hospital with MRSA!!!
Pretty fed up at the moment as I feel that the Hospital has just
dumped him at home with no Community nursing what so ever.
My family are looking into the legal side at the present.
Take care all SJS sufferers and carerers....
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