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ID: 100144 Time/Date: 01:58:05 AM PDT/ 07-19-2011
Name: debbie williams
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Story: hi my name is debbie williams, and in aprilthis year my 3 year old son george began feeling a little unwell, he was laid on the sofa for most of the day, it was a wednesday evening he had a temperature i checked this and found it to be quite high,he had chapped lips aswell which he had had for around 2 days.the weather had been hot and i presumed he caught to much sun. I gave him the lowest dose of nurofen for children,2.5ml and it didnt touch his temperature so 5 hours later i gave him another 2.5ml .
he fell asleep and i wasnt too concerned thought hed maeybe picked up a bug and would sleep it off.I woke up thursdaymorning to find george in my bed which he never did.i instantly knew he was no better, he seemed very sleepy and was still really warm.i phoned the doctor who couldnt see him until 5pm that day.whilst on the phone and monitoring george i became aware that his lips were swelling and he had some puffiness around his eyes.his voice seemed muffled, and thick. i rang 999.the ambulance crew arrived but in the shoet time of me waiting for them i realised george was reluctant to sit up.he seemed very drowsy.the ambulance crew arrived and they asked if hed had anything different to normal. the only thing i could think was the nurofen as hed never had it before.they decided to admit george straight away.we arrived at A&E , my husabnd came down and grace georges sister, quite a few doctors saw george , but didnt really know what it was.although i think everybody suspected an allergic reaction to nurofen seen as though that was the only thing hed not had before.aswe were in A&E we began to notice 2 small sores appering on george just looked like scraped was admitted to the disney ward.Many tests were carried out and george was given antibiotics although not orally as he was having difficulty swallowing at this point.althoh he was still fairly alert and chatting a the next morning (friday) george had a few more sores on him.the nurses said george wasnt improving on the antibiotics.geoge was also refusing to pass urine so had to have a cathetar pulled this out so had to go to theatre for one fit staright into his bladder. his penis had become serverly swollen and red.
bythis point friday night.georges skin had started to redden all over and we noticed more of these sores was refusing to eat, but thankfully was still drinking.he was still fairly chirpy.then through friday night george took a dramatic turn, he was itching all over and became extremly aggitated .he was almost unresponsive.ibecame terrified.
the doctors at this point were treating george for scolded skin syndrome. by saturday morning the nurses decided to ring sheffield childrens hospital for adviceon gbeorges condition......and all of a sudden it dawned on me that tyhe doctors didnt know what they were treating and that georges condition had become critical.they informed us that they thought after advice from sheffield that they weretreating steven johnsons syndrome.i'd never heard of it.but they just kept reassuring methat he was fine and would be ok.they were brilliant im glad i didnt know what i know now or i would have had a breakdown.
by this point they had bandaged some of george to try and stop it sticking to the bed began to not be able to see very well.they told us they were transferring george to sheffield via ambulance and that we wouldnt be able to go in the ambulance with him as they were managing a compromised airway!!!!!!!!!!!! so they needed a team of medical staff with him so for his safety it was best if we made our own safe way there. that journey wasthe longest of my life. i couldnt helpthinking that he wouldnt be ok when we arrived.when we did arrive the scunthorpe nurses were waiting for us and gave me a big hug and informed us he was on the burns unit where they could give him the skin care he needed.i needed some answers now and the doctors at sheffield told me how rare this condition was they also informed us that georges condition wasnow t.e.n.s syndrome which is the worst case of steven johnsons where more than 30% of the body is affected .by now all his face was affeceted andhe looked as though hed been in a bonfire!!!!! my heart broke! george couldnt open his eyes due to all the swelling and puss.that night (saturday )they transferred him to high dependancy! he was given immunoglobulins intravenously! and that was georges worst night.he was like a sleeping baby! he was so very poorly.the nurses told us that tens carried a one in three mortality rate! i prayed!!
by the morning george seemed to be picking up abit he sat up was listeningb to the telly and making small chit chat.he was allowed back to the burns unit.he had another 4nights of immunoglobulins each day improving i knew hed made it! he was so brave!the one moment that broke my heart was when daddy fetched george a new to cay and gave it to george and george said daddy can you tell me what colour it is?.he also asked if he was going to die?!!!!!!!
we came home with george the day of the royal wedding! he still had shedding skin which he didnt like. but was soing amazing .he had eyedrops and medicine for a week. and returned to school 3 weeks later.he loved the fame when he was on the local news and in the national took this horrific ordeal in his stride but me and ben new just how lucky he had been.everyday i thank god for him and the doctors and nurses who saved george! 4 months on and george is doingamazing he has just been sighned off fom the eye clinic with full vision! and doesnt need any follow up .he is my shining star and i truley believe the immunoglobulins saved him before it took hold compleatly!
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ID: 100143 Time/Date: 01:57:16 PM PDT/ 07-13-2011
Name: james russell
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Story: In the month of November 2010 I recieved a phone call from a friend informing me that my mother Patricia Russell was in the hospital and had a fever. When I arrived at Temple Unniversity Hospital I was told that my mother was located in the burn unit and that she was transferred from Paoli Hospital. When I finally located my mother I was very shocked and emotionally distraught once I noticed the severe burns that she had on her face and body. I immediately asked my mother's doctors and nurses what was the cause of her burns and fever. I was informed by her doctors at Temple Unniversity that the causes of her burns were due to a side effect from using a drug called Levaquin. The Levaquin gave my mother diabetes, high blood pressure, tendinitis, nerve damage and worst of all STEVEN JOHNSON SYNDROME!!! My mother stayed in the hospital for a month with severe blisters on 80% of her body, face and mouth. A breathing tube was used to assist my mother with breathing due to the severity of the disease. My mother is still trying to rehabilitate herself but has become depressed due to a lack of financial and physical stability.
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ID: 100142 Time/Date: 01:32:19 PM PDT/ 06-14-2011
Name: Kelly Greene
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Story: Hello,
My name is Kelly. according to my mother I have Stephen Johnsons Syndrome, or rather I had it, I guess. The reason I dont know my own story and have to go off what my mother tells me is because I developed this and Serum Sickness when I as 14 months old, I suppose the first thing I had was Serum Sickness and I became very ill then the hospital gave me Penicillun and that is when the SJS stepped in. at age 28 months my mother was told there was nothing the doctors could do and if she signed off on experimental drugs they could try that. Mind you this was back in 1979 when it happend so they did not know about SJS (supposadly) and to make a long story short I survived and according to my mother I was the first survivor of this, the hospital thought I was going to die until an intern doctor suggested they "clean my blood" I guess they took all my bad blood out while transfusing good blood in, I had already had 2 blood transfusions and developed staph infection in which left many many scars throughout my entire body, especially my face. The SJS then took over my left eye in which now I have 9 pin size scars on my retna and am for the most part blind, but if it is true that I am the first survivor of this horrific thing then I am glad to be alive and to have taken on these scars so that others dont have to. I do however want to make it known that this disease is suppose to be serious but every time I have gone to a doctor and I tell them I had this, they pass it off like it is nothing, yet you can see the scars on my face vividly, I litterally have a hole in my chin under my lip because the infection ate away at my skin. and now I have some health issues again and they think it may be RA or Lupas, I am wondering if it is a backfire of the original problems I had through my childhood.
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ID: 100141 Time/Date: 04:56:40 AM PDT/ 06-14-2011
Name: stacey
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Story: it all started when my 16 month old daughter was taken in by ambulance due to a pro longed seizure the medication they gave her to stop the seizures was phenytoin, to which at this point i was so grateful they had a drug to stop it.
until a week or so had passed with re visiting the hospital because of high tempreture i knew something was still very wrong, she was admitted to one hospital and for 9 days they did not know what was wrong with her they done several blood tests that after so many they couldnt find a vein to do any more, they finally decied to send her somewhere else because they couldnt find the cause and yet still gave her dose after dose of phenytoin.
we was sent to a hospital that had an infectious diseases unit, until we got there we didnt have a clue what was happening to our precious baby girl, one consultant that was looking after her took one look and knew what it was straight away 'SJS' he told us so immediately i went online to find out what this was, i couldnt believe what i was reading, was my baby going to die from this? at the hospital i couldnt bare to watch her go through this but i had to stay strong for her sake if she was fighting it i could atleast stand by her bed side. her body was burning from the inside out she had blisteres forming ontop of blisters and just bursting, her mouth was constantly bleeding, her eyes were so red with blisters on the eye lids, her arms and legs were bandaged to stop the sores from rubbing.
but she finally pulled through but still has to go for check ups on her eyes. she wakes in the night screaming, this awful drug they prescribed nearly killed my daughter!!
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ID: 100140 Time/Date: 05:54:59 PM PDT/ 05-31-2011
Name: Karen Bies
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Story: When i was 14 i broke out in a rash. I was taking penicilin and bactrim. when I first noticed the rash it started on my wrists and it itched really bad. by the next day my eyes had swollen shut. my mom took me to Lacrosse wi and with in 15 mins of being in lacrosse I was in the hospital and they were running test. the drs discovered it was sjs. Back then is was still pretty rare and nobody new much about it. i am non 38 yrs old and belive I have sjs again.
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ID: 100139 Time/Date: 06:33:09 AM PDT/ 05-21-2011
Name: chadia
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Story: princess amira age just 4 passed away with ten.amira was diagnosed with leukemia on 1st of feb 2008 and died on 19th of march 2008. we was told amira had to have a antiobitic every weekend to stop amira from getting neumonia. we said we had stressed to the doctors that we think that amira was allergic to it.they just carried on . amira had swelling dowm below and they did swabs etc.any way they carried on with the medicine .after 6 weeks amira had a red mark on her cheek like amira had be burnt.then blisters appeared all over amira .and all her skin was coming of.sadly amira died.we had to bury our little girl in bandages.amira we wouldnt want you back again to suffer all that can doctors get away with it .could i sue any one. rip our princess you was simply the best the bravest and the most beutifull little girlxxxxxxxxxxxxxxxxxxxxxxxxxx
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ID: 100138 Time/Date: 04:10:52 PM PDT/ 05-04-2011
Name: Raina Hammond
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Story: I had a 72 year old man living with me wo became realy sick .he went in to the hospital were they had togive him a high dose of meds. This mad him have a elergic ack to it,It caused him to get SJS .it hurt my heart to see this man in the pain that he was in .his skin just melted away.looks like burns. and blisters everywere on his body.He sufferd it got so bad .this is something that no one should go throw .he passed may 3 .it is realy hard to see a person go throw that .i feel for anyone who has went throw that and to all the familys who lost some one to SJS. It is realy sad that companys wont you to take there meds to make you better and they can KILL YOU .SJS IS ONE Of them ....14
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ID: 100137 Time/Date: 07:05:06 PM PDT/ 04-19-2011
Name: Amy Nyman
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Story: My daughter, Ivy - aged 4, had SJS two months ago; in February 2011. She had taken a full 10-day course of Bactrim for a UTI. She had never had Bactrim or any other Sulfa drug before, but both my mother and I are allergic to Sulfa drugs (I'd had hives, my mother a small rash.) It seems clear to me there's some genetic predisposition at work here and I will never allow my other daughter to be given a Sulfa drug.

On day 10 of taking the Bactrim, Ivy was more tired than usual and her face looked flushed. The following day, she awoke with a very faint rash on her arms and legs and I suspected a drug reaction immediately (she had had an allergic rash after taking a full course of Amoxillin several years prior.) We couldn't see our usual pediatrician that day but we saw another doctor in the practice who diagnosed Fifth Disease, even though Ivy had already had that and this looked different. The following day the rash was more pronounced and she developed a slight fever. I called the pediatrician again and was told it still could be Fifth Disease. The following day she was much worse: fever of 102-103 and a bright red rash covering her entire body and the most worrisome of all: she was complaining of "bumps" in her mouth. I brought her in again and we got to see her usual pediatrician. She was pretty sure it was a reaction to the Bactrim as soon as she saw her, and mentioned SJS as a possibility. She told us to go directly to the ER if anything got worse with her eyes (they were just a little red) or her mouth (her lips were just a tiny bit swollen at that time) She also suggested we come in the following morning (Saturday) because she was working then and would see if anything had gotten worse. After a sleepless night for all of us, we returned to the office Saturday morning. At that time, her pediatrician saw a blister in Ivy's throat and sent us directly to Children's Hospital at Scottish Rite, Atlanta.

Once there, they did bloodwork to rule out Kawasaki Disease, which can look very similar. Labs were normal except for white blood cell count and they made the official SJS diagnosis. At that time, Ivy was still feverish and covered in the bright red rash but still only had blisters in her mouth and throat. They admitted us and advised IVIG treatment, explaining that we could 1) do nothing 2) use steroids or 3) use IVIG. They recommended IVIG saying that patients with this treatment have done best, in their experience. We were so fortunate that Ivy was seen by two Pediatric Infectious Disease doctors who had seen many SJS patients (one of the doctors estimated he'd seen 50 in 30 years of practice!) In contrast, most of the pediatricians and nursing staff we saw had seen none. During our stay however, one of the Infectious Disease drs said there were 3 cases of SJS in that hospital at the same time as us!

Ivy had to have two rounds of IVIG treatment and they did make things worse before she got better, as the doctors had warned. Ivy's skin then started to blister and her cheeks, arms and hands were completely swollen and bright red. Her lips were also incredibly blistered and swollen and she couldn't eat or drink much of anything for days. For a few days, she slept and I cried. Finally, she turned a corner and was up, chatting, wanting to walk and eat! Amazingly, her mucous membrane involvement seemed limited to her mouth and throat only - she had no real issues with her eyes (only redness) or problems urinating, etc. They did consider hers a "mild" case.

In the two months since we left the hospital, she has only traces of the rash on her cheeks, arms, legs and buttocks. There have been no other issues we can see. I know just how fortunate we are, but I am terrified that this could happen again - to her or my other daughter. Both have suspected allergies to amoxicillin and my other daughter is thought to be allergic to cephalosporins as well. I am so afraid one or both of them will have an SJS reaction to some medication in the future! We are scheduled to have penicillin skin testing done on both of them in a few weeks. The allergist seems to feel they are in no danger from that, but I am quite worried about it.

If you've read this far, thank you! I'm so grateful to have found this website and community as I want to learn as much as possible about this condition. I wish the best to you all as you cope with the after-effects and uncertainty that comes with a past SJS diagnosis.
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ID: 100136 Time/Date: 10:27:31 PM PDT/ 04-17-2011
Name: kelsey dettinger
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Story: August 4, 2009 i became sick, my boyfriend at the time gave me some ibuprofen to get my fever down (it was at 101.2). Later that night i started to feel even worse, itook my temperature and it had rised to 104.6 (while the ibuprofen was in my system). So i decided to go to the emergency room here at our local hospital. They took some blood work, and did some xrays, and could find nothing wrong. My mom noticed i was starting to get a rash, and the doctors brushed it off, gave me some pain medicine, and told me if i felt like this in a week, to come back.

Later that night i woke up, it was 2:37am, and started getting sick, uncontrollably, my eyes felt like theywere glued shut, so i ran to the bathroom. i had a bunch of gunky looking stuff in my eyes, and noticed i was extremely itchy. i had little red dots all over my body. it looked like i had the chicken pox. my mom woke me up at 7:00 am, and asked me how i felt, i told her i needed to go to the doctor as soon as possible, because something was not right, i felt weird.

As soon as we got to the doctors, my doctor looked at me, and told me i needed to get to st.francis immediatly. (it was 45 minutes away). so she called for an ambulance.

When we finally got to the hospital, they put ivs in me immediatly, and started taking a bunch of blood. no one knew what was wrong with me, what were once little dots were turning into bigger bumps. so all the doctors thought i had the mumps.

my mom left that night, and told me she would be back in the morning, because she couldnt find anyone to keep my little sister over night.

At about 9:00pm the doctors came into my room, and asked me what my moms phone number was because they needed her to come to the hospital, i had no idea what was going on. my mom got there and they told her i needed to be moved to the ICU.

The next day theyfigured out that i had sjs/tens. i kept asking when my boyfriend was coming because he told me he would be coming to visit me. when he finally got there, i tslkedto him for about 5 minuted before my eyes started burning uncontrollobly. i went to the bathroom, and my eyes had turned blue.(they have always been dark brown).

For the next few weeks i was really out of it and dont really remember much. my eyes had blistered shut, and i couldnt see. i remember the pain, from the blisters, and waking up not being able to breath. i was told i had blisters innside my lungs, inside my body, and outside of my body. i looked like i had been in a fire.

I was in the hospital for the whole month of august in 2009. 3 1/2 weeks in the icu, and the rest in a normal room. the doctors didnt think i would make it, but i did.

SJS/TENS has effected my life. i now have a fear of taking any medication, i have bad panic attacks. and both of my eyes are messed up. my left eye is always dry, i have to put artificial tears in it every 30 minutes, and my right one is always watering. i would not wish sjs/tens on my worst enemy.

if anyone has gone through this, or has someone going through this and needs someone to talk to, id be more than happy to talk. and i appreciate anyone who has read my story.

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ID: 100135 Time/Date: 10:31:54 AM PDT/ 04-15-2011
Name: Crystal Finau
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Story: News

Georgia Teen Hospitalized At Stanford After Trip To Disneyland Turns Tragic

- view video -
PALO ALTO: Basketball Star On Life Support In Stanford After Suffering An Aneurysm
Updated on: 2011-04-15 03:38:06

Story Updated 2011.04.15 at 12:28 AM PDT

A high school basketball star's first trip to Disneyland turned into a tragedy.

18-year-old Miguel Windley, a high school senior from Columbus, Georgia always dreamed of coming to California. He had just won a basketball championship and was planning to celebrate with a trip to Disneyland.

"He got on the flight, I was waving to him and I'm thinking 'yay' look at my baby he's taking a flight by himself with his friends," Miguel's mother, Nanette Windley said. "He never made it to Disneyland."

He suffered an aneurism on the plane. On Thursday, Miguel was in the intensive care unit at Stanford Hospital where he underwent two open heart surgeries but there were complications.

"I don't know how this happened, but my son is burning inside out ... he's burning constantly, his skin is peeling constantly," Windley said. "He doesn't look like my son at all."

Windley says doctors told her Miguel developed Stevens-Johnson Syndrome. The rare disease causes a person's skin to peel off. He is blistered all over and is now blind.

Windley is running out of money for lodging, food, and transportation. She's been told that Stanford can't provide the specialized burn care Miguel needs.

"They tried to send him to Berkeley burn unit but they wouldn't accept him because he's not a resident of California," Windley said.

To donate funds to assist in Miguel Windley's recovery donate to Bank of America under the account: The Miguel Windley Special Needs Trust Account #05207-72178

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