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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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ID: 100134 Time/Date: 02:52:11 PM PDT/ 04-04-2011
Name: Judy Lewis
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Story: My brother died March 30, 2011, from SJS/TEN. He went in to the hospital on January 30, 2011 and was there until he passed away. He was 63. He had been given allopurinol for a gout diagnosis. He began to have flu-like symptoms and then to have the skin problems so prevalent to SJS/TEN. He lost all the skin on his body. He had surgery on his eyes, he had a ventilator, he had a dialysis machine, he had surgery to remove dead parts of his intestine. He had days where he was really sedated as the pain would be too great. It was a roller coaster ride, he would have some good days where he was awakened and with the help of the respiratory therapist could talk a little to his family. That is when everyone had high hopes. Then he would crash and be much worse. He developed jaundice as his liver was not functioning well, his kidneys were gone. He had lost 75 pounds and was so weak he could not lift his hand. He had continual internal bleeding and received blood and platelets daily. On Tuesday, March 29, the doctors did surgery to find the source of the bleeding and discovered that his internal organs had died. There was no longer any hope for survival. The dialysis machine was turned off, he was taked off most IVs but the ventilator was left on as he struggled so to breathe, he was heavily sedated. He passed away the morning of March 30, 2011. This is the most horrific disease for any human being to be diagnosed with. To survive is a miracle, we needed one more miracle.
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ID: 100133 Time/Date: 11:12:02 AM PDT/ 03-18-2011
Name: Shernie Wilkes
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Story: This is an update to my original posting in July/August 2008.
I spent 23 agonizing days in my local hospital, and endured many months of therapy and recovery. I would not wish that experience on my worst enemy!

April 15, 2011 is the 3rd anniversary of my admission to the critical care unit, and I am living with numerous health conditions that did not exist previous to my reaction to lamotragine. Whenever I get a tingle in my lips, an itch that can't be satisfied, or swelling or tenderness in my face I secretly say "Oh-oh, here we go" and hope no one notices. My family and employer (local school district) are very supportive of my needs for rest and frequent Dr. visits, however I attempt to disguise my pain and fatigue with humor and silence. I don't think anyone really understands just how this disease can affect a person's daily activities. I keep trying to make it go away by exercising more, eating less (meds have added 20 lbs to my 5 foot frame) and living as though it never happened. but I just can't get it together for very long.
I am not overly fearful that I will react again; instead I am vigilant in the substances my M.D. requests I take, and am careful about the foods I eat (I have lived with food allergies for over 25 years). I have read numerous stories from SJS/TEN sufferers over the last few years, and I truly believe that I am one of the LUCKY ones, in that I have been able to resume as close to my normal life as can be expected - with some modifications. My faith in God is stronger than ever. I have no reason to ask "Why me?", because the answer may be "Why not?"

Some of the ongoing issues I have include: constant fatigue (I am always needing to rest), strength and muscle tone impairment, fluctuating vision which creates difficulty driving and reading, swallowing problems, tongue and cheek swelling (reduced taste buds, frequent cheek biting and scarring), fingernails that constantly split - up to the cuticle, hair that falls out with every brushing, skin that bruises easily and heals slowly, and constant equilibrium/ balance difficulties. These are a few of a host of symptoms relating to a severe reaction to 75mg of lamotragine (Lamyctal).

I am grateful to all the nurses at Walla Walla General Hospital, for their top notch care when I was so fragile with blisters and had to be kept on IV for hydration and steroids, and for their compassion and company when I was trying but not having much success at making jokes about my stay there. I was diagnosed within a few days, and I think everyone did their research to treat what was unknown until then.
Thank you to the SJS Foundation for giving us a forum for contact and discussion. I need to know there are other people with similar stories and that I am not alone in this path I take.

Shernie Wilkes 54 years old
Walla Walla WA
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ID: 100132 Time/Date: 07:50:47 PM PST/ 02-24-2011
Name: Ruby
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Story: I never thought in a million years this was possible. It is strange how it all happened,how ones face can become unrecognizable in such a short time, my husband explains it as unbelievable. That is until it happened. 21 days ago he had taken me to the local Hospital in Odessa Texas because I had a bad infection and fever we were just unaware of what or where. Without any testing they diagnosed me as having URI and Sinus infection. Administered meds and sent me home on 2 other occasions during the same week I returned with worse symptoms. On 2/16/2011 my husband brought me back to the same hospital were I was admitted to the ICU and at first told it was facial cellulites now they say it is Steven Johnson Syndrome and have reacted badly to all of the antibiotics and instead of being able to go home they want to start the process over. I have never even heard of this until 9 days ago. I am a little scared because it appears that there is no answer or cure anywhere. I have found some comfort in Julie's Story, experience, strength and hope. It is overwhelming to be 31 and finally seeking a spiritual aspect due to an illness I have no control over.
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