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ID: 100039 Time/Date: 02:17:30 PM PDT/ 06-28-2009
Name: Kelli West
Email Address: Kelli3@tampabay.rr.com
Story: Several years ago my son who was 11 at the time was put on Bactrim for what the doctor thought was MRSA. After the first round of Bactrim the infection was not all the way cleared so the doctor put him on another round of Bactrim. On the 2nd day of this round he began to develop a rash on his chest that was quickly spreading to his face. His cheeks began to swell and was starting to get blisters around his mouth. I took him in immediately to be checked. His pediatrician thought it might be a reaction to the Bactrim so she had him stop taking it and put him on prednizone, but did not feel it would get any worse. As a side note we were going on a trip that afternoon so she cleared him to fly and we were on our way. Little did we know he would just go down hill from there. By the time we landed, he was much worse and at about 4 a.m. we were at the emergency room. At first I was furious that our pediatrician allowed us to take him on a plane but it ended up be a blessing from above because he ended up at Childrens Hospital in Boston and he could not have been in better hands. The first ER we took him to knew exactly what he had and had him transported to Children's. He was put on an IV for fluids and pain meds. We were told that there was really nothing they could do and it would just have to run it's course. Not the words we wanted to hear. We did not know if he was going to make it. They made him as comfortable as they could. He had developed blisters from head to toe, inside his mouth and down his throat. His eyes were gooky (for lack of better word), and he was in alot of pain. The next few days were the longest days of our lives. After about 4 days he stopped developing new blisters so we were told that it may be headed in the other direction which was good news. Praise God!! I had memorized every part of his body just waiting for the day we would wake up and there would be no new blisters. He ended up being there a total of 11 days. He was lucky because he did not have to be tran
sferred to the burn unit. We were told this may happen in the beginning. He lost alot of skin, his lips turned black and shed off completely, most of his finger and toe nails ended up falling off he lost alot of weight. Eventually all of this healed and there seems to be no permanent damage done. His eyes are fine and you would never know that he went through what he did. Again, praise God!! I remember all of this like it was yesterday. I'm sure I always will. We are so fortunate that our son made it through this and made a full recovery. I hope this gives someone else hope that you can make it through this. Because I know when you are in the middle of it there are days where you don't think you will. My sympathies go out to the families whose loved ones did not make it through. If there is someone reading this who needs advice or just someone to talk to I am always here to listen.

P.S. Bactrim is what caused my son's SJS. We were told to stay away from and Sulfa based medications.
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ID: 100038 Time/Date: 02:16:14 PM PDT/ 06-28-2009
Name: Paul Donnelly
Email Address: donnellydonners@aol.com
Story: It is 2 years now since my daughter Rachel, then 14, was rushed into Liverpool's Alder Hey Hospital (UK) with SJS and only now, am I coming to terms with the most traumatic period in my life.

Rachel, like alot of cases I have read about, was diagnosed by our doctor with chicken pox, who did state that it was alot like SJS, but quote "couldn't be SJS as it is so rare and I will never see this condition in my working life". Rachel quickly became very unwell, with tennis ball size blisters all over her body. Once in hospital, she was taken to theatre for a 4 hour operation to remove all the blisters and dead skin and was the wrapped in silver and bandaged head to toe. The consultant told me she had a 50% chance of survival and that more blisters were appearing by the hour.

Rachel spent 10 days in intensive care, being fed through a tube and underwent a further 2 operations to clean her skin to try a prevent infection. Her eye sight deteriorated and her breathing was becoming more difficult due to her airways closing over with blisters down her throat.

Rachel was blessed and pulled through and spent a further 2 weeks in hospital recovering and has now made a full recovery, other than some scarring and dry eyes but thankfully has her eyesight is in tact.

All this down to a little pill 'Trimethoprin'.

I cannot thank the consultants enough as they saved my daughters life with their knowledge on how to treat this condition, without them Rachel may not have been so blessed with recovery. And also this site, that I found during our stay in hospital. Only now can I write this and share my experience of this 'not so rare', life changing allergic reaction.

God bless you all.
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ID: 100037 Time/Date: 02:15:07 PM PDT/ 06-28-2009
Name: Jerry Stabnick
Email Address: sstabnick@wowway.com
Story: I contracted SJS as a toddler as a result of an allergic reaction to Sulfa.
At the time, not many doctors knew about the disease, or how to go about treating it. I am now 73 years old. I have no sight in my left eye and very little in my right eye. My right eye has developed a cataract just near the small spot on my cornea that is clear and allows me a little sight.
I am wondering if anyone has had a cataract removed, what are the risks,
what are the names of any doctors who do this type of work, and is it worth my trying the surgery? I have had many surgeries throughout my life. Some worked and gave a little relief for some time, but my wife of 42 years has been taking care of my eyes on a daily basis, removing eyelashes and anything else she can see that hurts me, but she refuses to do cataract surgery Thank you in advance for any information or advice you may have.
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ID: 100036 Time/Date: 02:14:16 PM PDT/ 06-28-2009
Name: Lori A Osborn
Email Address: EmailAddress@notprovided.com
Story: I had went to a neuroligist for my on going migraines and after some tests he prescribed dilantin at a low dose for the first 4 days and after that would double the dosage. I had not quite felt right sore throat, achy but just thought I was coming down with something until he raised the dosage the next day I woke up and had taken the dilantin and went to work within a couple of hours I really started to feel bad, low grade fever, sore throat. I went home and went to bed feeling awful. The next morning I had a rash and my face was swollen like a ballon I was still taking my medicine and feeling worse. I felt really out of it. My husband took me to our family physician and she thought I had scarlet fever, started giving me penicillian shots and sent me home, I was getting worse and worse hour by hour, day by day, I kept going back to my family physician she could not figure it out but decided that I should not take any medicines and give me a predisone steroid. I was in excrutiating pain and could not even stand to have anything touch my skin. I felt like I was on fire and I could not sleep, I literaly thought I was going crazy. Oncew she took me off the dilantin in a few days I started to feel a little better and then she put me back on my dilantin and within a few hours I was back in excructating pain and had a bright red rash all over me again. So she put me back on a higher dose of predisone and I never took dilantin ever again. It was a nightmare. Several layers of skin peeled off in sheets like I was sun burned from the inside out and I was out of work for about three weeks. I was very fortunate that I was able to come out of it without any lasting issues and alive. I probally drove my doctor crazy but I was not going to keep going the way I was and I was glad that I did stay on top of it as I did or who knows what would have happened.
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ID: 100035 Time/Date: 02:13:23 PM PDT/ 06-28-2009
Name: michelle
Email Address: EmailAddress@notprovided.com
Story: I was hoping someone could help me to understand if this is what my 5 year old daughter had gone through. 4 weeks ago my daughter had gotten sick. She had a fever and I had given her Tylenol for a fever. She started developing an upper respitory infection and a horrible cough and I brought her into the doctor. The doctor didn't see her however a nurse practictioner did and said her lungs sounded fine and that this was just a virus and this would pass. If she gets worse bring her back in. 10 days later she was getting worse. I brought her back. They finally put her on something being she was now sick for about 2 weeks. She was given Ammoxicillin. 7 days into it she developed a fever of 103.7. I gave her Motrin and Tylenol in the same night and had a hard time getting her fever down. I called the doctor and they said to continue to give her the motrin or Tylenol as directed, as long as the fever is coming down. She seen the doctor the next day and the doctor said she may be developing another virus on top of what she has. 2 Days after the fever she broke out in what I would say looked like hives/rash. it started as blotches on her back and quickly went up her neck onto her face in a matter of moments. She was complaining that it was very itchy. Her skin became super sensitive. I brought her to the hospital where they administered prednisone and benidryle. Nothing seemed to of helped her. At that point she only had this on her stomache and back, arms, face. Some where raised some where flat. By the next day it became a lot worse, it looked as if her whole body was thrown in a fire. 90% of her body was covered in this red rash that itched this poor little girls body all over. Not even oatmeal bath, or calming oatmeal lotion was helping nor was the benidryl at this point. One night she hadnt slept but one hour due to the itching. I couldnt do anything for my child and it was horrible to see her go through this. I brought her back to the doctor and told them that we need to do somethin

g about this. The doctor said this wasnt an allergic reaction but a drug rash. She prescribed her Hydroxyzine for her. That seemed to be the only thing to help. Toward the end of all of this her feet were swallon and red and hurt for her to walk on. They finally went down after a day and she is finally through all of this. We dealt with this for almost a week. I dont know if this is SJS or not. I can say this.. She didn't have any crustations on her eyes or mouth sores except at the hospital her lip started to bleed as if it was very chapped. This is my question if anyone out there could help me that would be great.
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ID: 100034 Time/Date: 02:12:39 PM PDT/ 06-28-2009
Name: Helen Morris
Email Address: EmailAddress@notprovided.com
Story: Hi, I had SJS when I was 4 years old as a reaction to antibiotics. I was very lucky and there was an Australian doctor working in our hospital (uk) who knew what I had. This was 1985 so my parents had no way of finding out what was wrong with me, they found one book which had only morbid facts in. Anyway I ended up in intensive care and can only remeber not being allowed to drink the ulcers covered me inside everywhere, the rash was all over me externally. My parents were told that the only reason I didnt die was due to the rash being so explosive externally. They said at the time this stopped the ulcers reaching vital internal organs. Obviously medical knowledge has improved vastly sice then so what my parents were told may not be true. I was discharged after a few weeks and remained very swollen and red faced for a long time although very skinny. I had problems eating afterwards, and developed epilepsy and migraines at the age of seven, and precancerous cervical cells at 19. However now i am fine my epilepsy stopped at 14, i still get odd migraines and i have had 5 years clear of bad cells. I have had no other side affects although it'd be good to find out what the long term consequence are as most doctors in the uk don't even seem to know what it is! One doctor prescribed me chephlosporns even though they are what caused the reaction!! Luckily I didnt take them!!

Anyway I hope all the people who get sjs or have had it a sucessful return to good health, this site is very helpful and good luck to the future.
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ID: 100033 Time/Date: 02:11:39 PM PDT/ 06-28-2009
Name: George kouretas
Email Address: EmailAddress@notprovided.com
Story: on January 15 Thursday of 2009, i came down with sjs/tens,i took levaquin 500mg. i only took 1 dose and i ended up in temple university hospital in the burn unit for 11 days. it is a good thing that my son was here and new something was wrong. i first developed a rash, hives, and some blistering on my lip,and forehead. through prayer,and a lot of support from family and friends, i m here today. when this evolved fully i had blisters from head to toe, hives and a rash.from jan 17 to jan 20 i did not think i was going to make it.on jan 21 wed everything disappeared as quickly as it appeared.all the tubes and the bi pap machine were removed.and on jan 25 i was home. we will never forget those days. i m 80 years old and i feel like Lazarus. i m sending this from fort Dix NJ. and the hospital was in Philadelphia pa.
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ID: 100032 Time/Date: 01:50:57 PM PDT/ 06-28-2009
Name: Anna
Email Address: amabate@msn.com
Story: Hello,
My name is Anna, and I was diagnosed with Stevens Johnson Syndome. I am 11 years old, and I have recurrent SJS. This is the sixth time that I have had SJS. For the first three episodes I was sent home by doctors who said that it was viral, and not to worry about it. The fourth episode I was admitted to Akron Childrens Hospital. Basicly, I was only at the hospital for dehydration. There was not a treatment, nor a route that the doctors could take to help me to get better. I spent five days there, and went home with no further answers.
On the fifth episode, I took steriods and they really didn't do much, but they kept the inflammation in my mouth down.
On the sixth episode, I was admitted to Pittsburgh Childrens Hospital, to get a IVIG treatment. IVIG transfusion goes in through an IV and coates the good cells to basicly give them a protection layer. For me, the treatment did not work at all, and after 4 days in the hospital I was sent home. I am currently recovering, and doctors are pretty much positive that I will get SJS again.
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ID: 100031 Time/Date: 01:50:09 PM PDT/ 06-28-2009
Name: DEISE DARC
Email Address: d-arc@uol.com.br
Story: I'M AFRAID TO DIE SOMEDAY, BECAUSE HERE IN BRAZIL , THERE ARE NO PROFESSIONALS THAT KNOWS HOW TO CARE OF SJS. I HAD THIS TWICE. FIRST TIME I WENT TO TEN DIFFERENT DOCTORS AND NO ONE GIVE ME ANY MEDICATION. ONE ASK ME TO DO A HIV EXAME, AND DON'T WANT TO SHAKE MY HAND TO SAY GOODBYE. LAST TIME I HAD WAS LAST YEAR. I TOLD MY DOCTOR THAT IT WAS SJS, BUT HE SEND ME TO A GYNNECOLOGIST AND SAID MY PROBLEM IS CANDID. I LIVE NEAR OF SAO PAULO, WHERE THE BEST DOCTORS ARE, BUT NOBODY KNOWS HOW TO TREAT THIS. MY SISTER HAD SJS THREE TIMES. IF SOMEBODY KNOWS A DOCTOR THAT KNOWS HOW TO CARE SJS, PLEASE CONTACT ME. ONLY WHO FELL THE PAIN OF BE FRIED ALIVE WILL UNDERSTAND MY FEAR.
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ID: 100030 Time/Date: 01:48:15 PM PDT/ 06-28-2009
Name: PRASHANT ATRE
Email Address: atreprashant@yahoo.com
Story: My 7 years daughter was recently affect the reaction of SJS, Story is like follows, 16 March 2009 she was got fever it was sunday. Next day on 17th we have consult our doctor and given her SEPTRON. At evening she get affeted by the rash and some burn spots. We have again contected to our doctor, they come into couclusion on that my daughter has got reaction of SJS. Due to we have get noticed it in time and our doctor given quick treatment, her SJS reaction is get in to control. But to control the reaction doctor given hre the mild doses of the steroids. So she get some weekness. But according to doctor she will come back normal within in month.

My doctor suggested to surf this site to know the SJS. I shocked to seen about the SJS.

THANK GOD you saved my daughter from hevy attact of SJS.
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