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.

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  • Posted

    Hello Jacky, My name is Robert Beale I am 40and from south yorkshire, I have SJS and got it due to Azithromycin it affected my mouth stripped the linning out of my mouth tongue and throat and gave me ulcers and lesions and blisters round my face and lips, I have been out of hospital for 3 weeks and am slowly getting better now but i am still on soft food and still have no felling in my mouth, recovery from SJS is a slow proces. I have lung problems as well now as it damaged the lung tissue as well s if he has problems breathing get checked out as well, and dont listen to GP'S i found it very hard as they know very little about this horrid condition.

    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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  • Posted

    Hello Jacky, sorry i forgot also can i recomend a book it is called Understanding Stevens- Johnson Syndrome & Toxic Epidermal Necrolyis it is by Woodrow Allen Boyer and available throuh LULU press buy a hard copy and also buy a download copy as well and put it on the flash drive that he will wear round his neck chapter 5 is for medical personell and will help in the future with further outbreaks.

    I hope all this helps you.

    Look forward to hearing from you.

    Regards Robert beale

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  • Posted

    Hello Jacky, My name is Robert I am 40and from south yorkshire, I have SJS and got it due to Azithromycin it affected my mouth stripped the linning out of my mouth tongue and throat and gave me ulcers and lesions and blisters round my face and lips, I have been out of hospital for 3 weeks and am slowly getting better now but i am still on soft food and still have no felling in my mouth, recovery from SJS is a slow proces. I have lung problems as well now as it damaged the lung tissue as well s if he has problems breathing get checked out as well, and dont listen to GP'S i found it very hard as they know very little about this horrid condition.

    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

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  • Posted

    hi jacky, i read your story and your son had exactly the same symtoms as myself, i first developed it when i was 7 and it wasnt until i was 15 that i was actually told that it was sjs, Im now 23 and i still suffer from it but not with legions or mouth ulcers but i get sore bones in my back and down my legs like cold shotting pains almost like feverish symtoms which occur every 6 months or so. I was told that i get sjs because of my nervous system and not a reaction to any medication, like when i get to exicted building up to something i cant wait for. Its just everywhere you read its always about reactions to medication and its not always the case. Anyway hope your son stays well.
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  • Posted

    Hi everyone, Im Jamie 21 from Newcastle upon Tyne, I got out of hospictal on tuesday after a week in there. I was told after recieving my pescription from my doctor i developed SJS i dont know much about it. I had 2 tablets and went too sleep and woke up during the night with huge blisters round my mouth and duly went straight to A + E. Im okay now sitting at home but cant eat properly yet altho i must admit im already back on some solids. My mouth is very sore still tho. Im totally clueless about SJS though. Am i now a carrier? Im aware of the fact it was due to anallergic reaction to the drugs pescribed to me. I think i was extremely lucky as it only affected my mouth and not the rest of my body. Although i was already suffering from Conjunctivitous and a chest infection. My mouths healing well now though and i feel great. Could anyone update me on what happens now with regards to SJS and me being a carrier? Im aware i shudnt use that medicine ever again though!
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  • Posted

    Sorry for your experience! I had 5 outbreaks last year alone. You are NOT a carrier< SJS is not contagious. It is a immune \"allergic\" reaction. Most are caused by drug allergies and up to half the people suffering never find out the cause. A dermitoligist is the proper doctor for you. Good luck and God bless.
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  • Posted

    [quote:dd5dfbf721=\"jacky allen\"]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.[/quote:dd5dfbf721]

    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.... sad

    [/quote]

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