Read SJS/TEN Stories, Page-21

Name :: MJ

Story :: I've been in the hospitol for a while an they hadn't told me the causes for my body's troubles. I notice my lips stay raw, as much as I put on them my mucuse eats it , my vision still isn't 100%, I can see but my eyes get tired. I'm not sure how well I'm doing I had a seizure the other night and knocked a whole in the wall and hit my head on the tub. I wish my life was differenent, I'm adjusting to these handicapps. How long does these things go on? The hospitol was too busy trying to prove it wasn't sjs, when it was. I was dillantin for seizures when this all occurred.

Name :: Joseph Way Email_address :: mw@hendra-holidays.com

Story :: Joseph is a happy 3 year old with Angelman Syndrome. He has experienced bad health throughout his short life, but nothing compares to the horror of SJS. Joe has difficult to control seizures along with a list of health problems. In May 2006, Joe was put on a small dose of Topiramate anticonvulsant, to help his "tremors".
We were warned about the usual side effects, loss of apetite, liver problems etc, but not SJS.
We wanted to help our little boy stop shaking all day, so we agreed to start treatment.
Joe became generally unhappy/unwell, but he only had a high temperature on and off, but I evenually took him to our local hospital, where they know Joe well, and refused to leave!!
They decided to keep Joe in for observation. To cut a very long story short, Joe was treated for a non descript viral infaction of the respiatory tract. A couple of weeks passed in hospital and his bloods and chest were now fine, but he still had a fever. As Joe relies completely on myself, I notice things that most people would dismiss. Joe had developed red pin prick marks on his legs, doctors decided to start him on Meripenem antibiotic to "kill all bugs"!!! They also decided to increase his dose of Topiramate, because he was on such a small dose. Two days later, the hospital thought he had chicken pox, as a blister had developed on his neck and his forehead. It actually added up, he had been miserable for 3 weeks, the right incubation period for it. As Joe has special needs, they moved him into isolation, but did not discharge him.
As the day progressed Joe deteriorated fast, his little mouth was black with ulcers, his hands, feet, neck and face covered in blisters. Around midnight a doctor saw Joe, she thought he may have Hand, Foot and Mouth Disease and chickenpox, but as it was the weekend, they would wait untill Monday to aspirate a blister to confirm the infection. We fell asleep. Morning came, Joe was very ill. I couldnt get a doctor to see him as they were doing their rounds. It was obvious something very serious was happening. As I pleading to see a doctor, my husband and daughter arrived and were horrified. Joe's heart rate then became very high and my husband demanded to be seen.
It all becomes a blurr, Joe was taken to HDU, put on morphene and struggled to breathe.
We were told at this point Joe could die, amazingly, he carried on. weeks of pain, creaming his little burnt body and praying went on. Then in July he seemed to be improving. His skin started to heal and we started to wean him off morphene. Megan-Lily celebrated her 5th birthday at his side,things seemed good. We then were told he had phneumonia but antibiotics had been started so not to worry.
The next day Joe had a trickle of blood from his mouth, his finger and toe nails looked like they had dirt under them. Next thing we are told Joe has Gram negative Sepsis, total oragan failure and internal bleeding. We were all told to say goodbye, he really couldnt pull through as nothig else could go wrong.
Joe has pulled through, 16 weeks later. We now have a happy 3 year old with scarring, he has lost all his nails on his hands and feet, oxygen requirement, dry eyes and chronic renal damage. Joe is finally home, he now needs 24/7 care as he chokes/gags relies on NG tube feeds, has chronic diarhea, needs oxygen, injectins as his bone marrow will not produce red blood cells, twice weekly bloods and his weight is increasing weekly.
Joe has also managed to fight off 3 superbugs!! He is a miracle boy and he still smiles. We have all been through a nightmare which should not happen, Or, you should be warned.
Our son is home for now, but we dont know how he will cope with the oncoming winter.
TH

Name :: soledad de guzman Email_address :: deguzmansoledad@yahoo.com

Story = hi,good day im a mohter of 4 kids i live in cagayan de oro city philippines my youngests son is ralph john de guzman he will turn 5 yrs.old this november he has cornea defect since birth he was diagnose by the docotr of sclerocornea and microopthalmia we go to different opthalmologist some says that my baby has no more chance for corneal transplant but some says there is, the latest doctor that we consulted was his advice is we have to wait till he reach the age of 6 he says that if we cant wait that time we have to bring him to america because here in the philippines are not well equipt for that case or that kink of problem of my son as of now we we do nothing we cannot send him for operation because me and my husband are only a government employee our salary is not enough to support our 4 kids untill now im still confusing if my son has a chance to be operated or to leave him like that i pitty my son very much if only i can give my eyes to him i will do it.can you give me some advices what to do and where can i ask for help is there any institution that can give a help for my son?i hope you have time to reply to me thank you very much god bless you all

Name :: gary jones Email_address :: garyevertonfc1878@hotmail.com

Story :: hi my story is i have basically had steven johnsons syndrome now 4 times in 3 years although your only ment to get it once in your life i have ad it to the case i have had to stay in hospital for like a month really is 1 of the worst illnesses you can have i think i am only 19 years of age and it has stopped me progressing in anythink i want to do because i have to take months out at a time on aciclovir now and thankfully upto now this year i have not got it but not counting my chickens yet

Name :: Janet Gratton Email_address :: abracadabra@shaw.ca

Story :: My daughter, Quinn was 12 when she was diagnosed with a "modified" type of SJS. It happened during a round of amoxl (penecillin). Quinn had had this drug many times before, but this time she had orthodontic braces in her mouth. The lesions were contained to her mucous membranes in her eyes, nose and mouth.

She only began to improve when I suggested the braces be removed - and the healing began immediately!

Although all subsequent allergy testing turned up negative for penecillin as well as everything else other than thiomercal, she was warned to stay away from penecillin in the future. No one warned us to avoid ibuprophen or anything else!

I fely very let down by the lack of support or information. She could have died while the outpatient infectious disease clinic and the eye clinic at Alberta Children's hospital played ping pong with us for over a week. I doubt very much her file was ever uploaded to a database for future reference.

I pray she never gets SJS again and that others can learn from our experience. I hope I live long enough to be proven right in my suspicion that the reaction was caused by a catalytic effect of the metal in the presence of the antibiotic.

Quinn has a lovely smile now, thanks to plastic braces!

Name :: Judy Warwick Email_address :: judy_seventh_child@yahoo.com

Story :: When my son Joseph was 11 months old in 1978 he had double pneumonia and ear infections the antibiotic they gave him gavefor this gave him Steven Johnson. He got the rash and his lips blistered and so did the inside of his mouth. He looked like he had eaten a colliflower and still had it in his mouth, thats what the inside of his mouth looked like and the Dr said all his mucus membraines looked the same. He was put in the hospital and put on another medication for the pneumonia and ear infection. We gave him cool baths to bring down his temp. After 2 days he was only getting worse. Oue Dr. consulted with another Dr about treatment and they decided to start him on cortizone shots. Our Dr had seen one case of SJS when he was younger, his dad was a Dr. and had a case. He looked in medical books for treatment but couldn't fine one for someone so young. Then the other Dr. said to start treatment with cortizone before it advanced any further. The side affects of cortizone take a whole book, I looked at it and read blindness, stunted growth etc and then closed the book. I had the choice of waiting or trying the treatment the Dr recomended or losing my son as they said the SJS will continue till it can't be reversed like cancer so I said get started. After just one shot Joseph was on the mend.
He was in the Hospital for 14 days and on two shots every 6 hours, one antibotics and one the cortizone. When he came home he had to go on liquid cortizone and was on it for 6 months.
Joseph had a couple of episodes with SJS growing up but they were mostly blistered lips and he had a bad case of acne. We tried acidophilus capsules and they worked. Whenever he felt his lips swelling he would take them and he never has a full blown episodeuntil he was 17. The Dr. had told us he may have another episode as an adolescent so we were looking for the signs all the time. When he was a senior in high school he had another real bad episode of SJS and was out of school for 2 weeks. He was put back on cortizone and he lost 20 pounds and his acne went away. He hasen't had another outbreak and he is 28 now.
He has trouble with his knees and teeth but nothing to bad. The knees are troubled with Osgood Slater but it could be all caused by the SJS and the cure. . When Joseph had episodes as a young boy most of the Drs. didn't know what SJS was even though I told them. He had to go through too many tests that wern't necessary because of this. I finally took him to a dermatoligest and he agreed with me it was SJS and put Joseph on steroides (boy was he happy thinking he would get real buff taking them like all the weight lifters) thank God he didn't, he wasn't on them long enough. The treatment cured his SJS and acne and he is close to 6ft tall. He just got married this year and is a wonderful young man.
From seeing your daughter on Montel I realize how lucky we were to have Dr that dianosed him so quickly.

Name :: Linda Email_address :: uni_forme@yahoo.com

Story :: I had SJS in 1997. I had a mild seisure and was put Diltatin an anti-seisure medication. It screwed me up so bad I couldn't even walk a straight line. My doctor decided to change my medication to something else (I cant' remember anymore) and I had a severe reaction to the medication.
It started one night with a burning sensation in my vaginal and I went to the emergency room and they could not find a thing wrong with me. I was tested for all Std's, bladder infection the whole nine yards. They recommended benedryl and sent me home. After 6 benedryl and a very restless night of sleep...I woke up the next morning to blotchy red skin and swollen lips.
I called my mom to have her take me to the doctor and after 5 days on steriods and a punch biopsy they determined I had SJS.
I now have been told that I have a hereditary hearing loss and my boyfreind saw a special on SJS the other night and asked if maybe my hearing loss could be related to SJS???
No one in my family has the cookie bite hearing loss that I have and I do wonder if it could be related?
I have never researched SJS and didn't realize it was as rare or seemingly not rare among people who suffer from seisures!
Does anyone else suffer a hearing loss???

Name :: Amy Looper Email_address :: arielsanangel@aol.com

Story :: My daughter Ariel age 3 was diaganosed on Sept. 26, 2006 with SJS. She had a virus 2 weeks prior to getting this so I took her to the doctor and they said that she had a virus to just give her ibuprofen and tylenol and her strep test was negative. So I gave her ibuprofen and tylenol. She kept on getting a fever off and on for 2 weeks and I would give her tylenol/ibuprofen for the fever. She developed blisters on her lips on Sunday Sept. 24, 2006 and we thought it was fever blisters so we put campho phenique and neosporin lip treatment on them. By Sunday night her lips were completely covered with blisters and were really swollen. We took her to the hospital emergency and they said that she was ill and needed to be admitted. They did some lab work on her and gave her ibuprofen and sent us home with a presciption for a possible tick disease(doxycyline). They told us they thought it was hoof in mouth disease, but wanted to give us doxycycline just in case. So the next day we took her to the pediatrician becasue she had gotten alot worse. He said that she had chicken pox and I asked him what about her blisters on her lips and he said that chicken pox could be blisters and start on the lips. So we went home and by Tues. Sept. 26, 2006 she had blisters all over and her eyes were matted shut. So we took her to another hospital and they said SJS was a possibility and they immediatley sent her to another hospital to a pediatric intensive care unit. There she was diagnosted with SJS and was treated with steroids and IVIG. She was put into an induced coma for 3 weeks and was in ICU for 4 weeks. SHe was then put out on the regular pediatric floor and was sent home 3 days later. She is still recovering from this horrible disease and is in a great deal of pain still.

Name :: Lara Dupras Email_address :: devilstar8908@yahoo.com

Story :: I was about the age of 5 or 6 when it happened. I had a urinary-tract infection and was giving sulfa drugs. I started breaking out with purpleish-redish spots all over my body. My mom thought it was chicken pox, she called the doctor and brought me in. They said it wasn't chicken pox but weren't sure what it was. So i had to stay that night in the local hospital that my doctor's office was in. They ran some tests on me and then explained to both of my parents that I needed to go to the Children's hospital. I was scared this entire time because first of all I didn't like being in hospitals. And the second reason was because I didn't know what was going on. I was taken to the children's hospital. I think I was there for a total of about a week. Really the only thing I can truly remember about that hospital was the fact that I got to play Ninentdo whenever I wanted to. They kept the tv in my room so that I could play it during the night. It kept my attention for a while but then when the nurses would come in the room I would get scared. How do you tell a 5 year old they could die from what they have?? I knew something was wrong though because they were talking in hushed voices to my mom and dad. I remember I had to have a bunch of tests run and I had Ivies in me all the time. After about 3 days I finally started feeling better. My body wasn't itching as much as it was before. The swelling was going down and they said I could go home soon. I was pretty happy that they said that but I still wasn't happy that I was in the hospital. And now that I'm 17 it's hard to look back and know I could have died from it. I think I'm pretty much lucky to even be here. I'm glad I am, I've got friends, a neice and 3 nephews. Plus I got to watch my brother and his wife get married. And I look back and think about how everyone elses life would be different if I wasn't here. It's kind of hard to believe that it was only about 10 or 11 years ago... but it still happened. My mom was looking up informaiton on it the other day and ran across some of the long lasting effects. I've been complaining I'm tired all of the time. She wanted to find out why. I had mono for a while and everyone thought that was why. And then she ran across a website that listed the long lasting effects and one of them was chronic-fatigue syndrome. So we're pretty sure that's what I've got. I hope that's all I got because I don't want to have to go back to a hospital like that again. That was one year I will never forget.

Name :: Kam Altaffer Email_address :: Kukulcan71@msn.com

Story :: At the beginning of October I began a new medication called Lamictal. The product information stated the side effect of a potential "rash". The first week, I noticed one unusual spot. After three and a half weeks of taking the medication, I broke out in lesions of the mucous membranes, and my one spot spread into several more. I called my prescribing nurse practioner the following day, Thursday, to say I thought I was reacting negatively to the medication. She told me to immediately stop and see a family physician. The Dr. told me the outbreaks were completely unrelated however coincidental they were. Friday, my nurse practioner called and told me to get to the ER for Stevens Johnson Syndrome. Fortunately, I think the problem was diagnosed early and seems to be healing. I luckily was not admitted to the hospital, I just promised to eat and drink regardless how painful it became. I'm writing because I think it is not as rare a condition as it seems and to let people know of my situation. I don't know if anyone else has discovered this, but drinking or immersion in water as hot as tolerable has incredible effects on the painful sores. I am female, 35 y.o., and live in Alaska.

Name :: MJ

Story :: I'm a SJS survivor, I look at these pics and know that I'm blessed and God really looked down on me. I had a reaction to Dilantin for seizures. I'm 31 and was having spells and didn't know at first my life has taken a total change. In July of 2006 I had a successful barber/hair/nail salon I had been in buisness almost 2 years and seizures started occuring. I was put on Dilantin and still was having the seizures well after about a month I thought I was coming down with the flu, and went to the ER and was miss diagnosed with hand, foot, and mouth infection. Went back two days later and my mouth was completely bloody and raw and pus was in my eye and they were blood red. I never thought it could have been an allergic reaction, because I never had one to meds before. Well once getting in the hospitol. The first hospitol was so bad I left after the third day I felt they were trying to kill me. At second hospitol I recieved great treatment and looking back I realize my burns were few compared to some pics I've seen. I thought I suffered, but I now know others have had it worse. I had a hard time eating carbs. after SJS for about 6 weeks I lost about 20 lbs in less than 2 weeks but I needed it. My vision was impared greatly extremly sensitive to light, but last week the eye doc put some drops in my eyes that improved the sesitivity greatly. I don't have to were sunglasses all day and night, but I try to wear them to not strain my vision. But my vision does continue to blurr due to mucus membranes. The worse maybe the daily aches or all over pains like arthritis, I try to stretch alot more now to keep myself mobile. All I can say is there's life after SJS and keep n prayer to the Most High. I did alot in the hospitol, because eternally I didn't know if I was going to live or die. I never felt that much pain in my life. Thank God for His mercy, stay encoraged and may God bless you through this test.

Name :: Shenelle Coplien Email_address :: shenelle_5@yahoo.com

Story :: I was originally diagnosed with the flu in early May of 2006. At the time I was living abroad in London where I was attending to school. I went to a walk-in care and was sent home with a Erythamacin. After I did the cycle, I was still ill. I returned back to the same walk-in care and was told this time that it appeared I had a tooth infection. I showed them what I was taking, but they sent me home with paracatemal with codiane (which is an over the counter pain killer) and another cycle of Erythamacin.

Two days later I noticed a thumb nail size bump on the inside lip of my vagina. Like any young sexually active woman, I assumed the worst. I had put the two and two together, and came to terms that I must have herpes, and flu symptoms are early signs of this particular STD.

I had decided to wait until I could get a regular physician oppose to going to a walk-in care for this 'bump'.

Within a few days, it had tripled in size. By this point I could barely walk, and urinating was horribly painful.

I went to another walk-in care but they sent me home without looking at is as 'they don't deal with STDS'.

I made an appointment for an outpatient sex health clinic. When I visited them, I had passed out in the lobby. By this point I had began to find smaller bumps in my lips and inside my mouth, making it painful to eat or drink, causing me to be extremely dehydrated.

The doctors at this sex health clinic couldn't diagnose it but suggested it was most likely a severe form of herpes. They had sent me home with another cycle of Erythamacian, as well as the rest of the mediciations to treat herpes.

Two days later, this bump had become the size of a gold ball. My roomate came home from class that day to find me delirous, vomiting up stomach bile, and not able to get out of bed. She rang 911 where an ambulance picked me up and carted me off to the same hospital that refused to take a look at it from the get-go.

Immediatly I was told I was extremely dehydrated. I was hooked up to steriods and saline solution. An on-call doctor from the gynotology ward had come to visit me that night and take a look. She quickly admitted me and had me seen by a doctor who specializes in diseases and disorders regarding the female sex organs.

After meeting with a series of doctors, a week later I was diagnosed with SJS. They never found a red streak on my leg, but as soon as they took me off of the Erythamacin, the sores on my mouth disappeared and over a weeks time the ulcer on my vagina lip also disappeared.

Dermatalogy opposed the idea of doing a skin test to in fear it would cause my symptoms to return and possibly be worse. Instead I was told to avoid all non-steriodal medications and Erythamacian.

Unfortunally since I have retuend to the US, I haven't been able to recieve any of my medical documents and don't currently have health insurance. I have spoke with a family physician who didn't have much knowledge on SJS. I just keep my fingers crossed that I never get the fly symptoms again.

Name :: Nivara Pillay Email_address :: nivarapillay@gmail.com

Story :: Hi
My name is Nivara, and im 28 years old from Durban, South Africa, and I was diagnosed with SJS in 2000.
It happened one night when I was suffering from severe stomache cramps. My mum took me to the the doctor, who then proceeded to inform my mum that I was pregnant, at the time I weighed 47kilograms, he then injected me with over 15 injections which caused an adverse reaction and I ended up in hospital. A week later I began getting very sick, I had a high fever, my skin began to itch and it felt like it was on fire, I was rushed to the hospital again, and then I was informed by my doctor, a different one, that I have SJS.
Having SJS has totally changed my life. I have to watch what I eat and watch what medication I take. Because of this I now suffer with constant migranes and yesterday had an allergic reaction to somthing I ate, now my body cant stop itching and is starting to burn again. It terrifies me everytime I think of what happened to me. I now cannot go to another doctor except for the one that diagnosed me with SJS. Im terrified of injections.
I also suffer from constant ear infections.
Nivara Pillay, South Africa

Name :: MJ

Name :: Janine Cuesta Email_address :: janine_cuesta@yahoo.com

Story :: I was also the victim of SJS last February 15, 2006 here in Bacolod City, Negros Occidental Philippines..But now im doing fine for this sickness I was on my recovery for 1 year and 10 months..Im doing my regular check up for my doctor every months or something that which i encounter not good for myself..I was confined that time for 1 month in Riverside Hospital here in our place only..And now i do hoping that I can able to help for those who are also the victims for these..These tragic that may come into my life was very pain and I never thought that I will survive..For now I do searching for a betterment that can help back my skin or my body living the same way that I am before..My eyes was most affected so i have a lifetime maintainance an artificial tears so that my eyes goes well..hope can I ask you some informations about these matters that make me be more confidence to face these...What will be the possibles that may help me to live in a better life..

Name :: Jennifer Tapley Email_address :: eugnjen@mtaonline.net

Story :: I am a SURVIVOR!
Well it started when I was 6 years old. I had a terrible reaction to Penicillin. It started as a sunburn in the middle of winter, blistering and then my skin peeled. So from then on I had a LIFE THREATING reaction to Penicillin and all the "cillins".

From 6 to 34 I never had a problem or given and "cillins". Well I wish it would end like that, however it doesn't. I was ill in November of 2005 and the Doctor forgot to pull my chart and the Pharamacist never cross checked my allergies. The worst part is I asked him to his face, if this had penicillin in it because I am severly allergic to it. He got an attitude with me because he was busy and so no you'll be fine. The medicine was called Prev-Pac.

Well I got the medicine on a Thursday night and started it on Friday 4 pills in the morning and 4 pills in the evening. On Saturday I woke up with burnig swelling eyes, asthma attack and a sunburn, yet again in the middle of winter, oh by the I live in Alaska. I called my mother to ask what happend when I was 6 and she started freaking out. I called the on call service of my doctors office and he instructed me to take Benedryl I was having a bad reaction and couldn't belive I was prescribe that Prev-Pac because in 1 day there was 2000 mg of Amoxocillin. The burns started on my legs and now mid day it was travelling up my arms. I called the on call doctor 3 more times that night and he kept instructing me to stay home.

On Sunday I was becoming very lathargic so I told my husband that we should drop the baby who was 22 months at the time at his Uncles and take me to the emergency room. I started going into shock on the way. I arrived at the ER and the doctors had no clue what was going on with me. They paged a specialist and THANK GOD for him, however, before putting me on the Life Flight from Alaska to Seattle, Harborview Burn Unit he told me and my husband that I have 4 days either I will live or die.

The outcome after 2 days was sunburn, blistering, and the my skin from Head to Toe 3 layers peeled off. My son would not come near me for 2 weeks because of the burns allover my body and the disfiguring of my face. Essentially my body burnt itself from the inside out. My skin has healed well with minor scaring and discoloration.

However, I suffer everyday with difficutly breathing, eye pain (due to dry eye syndrome), fatigue, muscle aches, PTSD (post traumatic stress syndrome) and Anxiety disorder. Oh and my sack of medicine to help me through the days. I wish to God this never happens to anyone it has been the most painful experience of my life.

My husband has been WONDERFUL through this whole ordeal. I gained 50 lbs of water weight because I was suppose to die but I beat the odds. The water weight came down but I was on Prednisone for 8 1/2 months straight and I will be on it on and off for the rest of my life. I gained 45 more pounds from the Prednisone however, that drug saved my life. I will be on eye medication for the rest of my life, lung medication, anti-depressants, anti-anxiety and lots more.

I hope all the survivors are doing well and best wishes to each and everyone of you.
Jennie

Name :: grace

Story :: hi....seeing this site is...i wanted to cry...julie's picture.have my own kid too.

i have a panic disorder,depression so im taking a lots of pills,as we moved i mean r house,i changed my pychiatrist.first it didnt affect me at all but when my pychiatrist changed my medicine it all happened.

the first day,i thought it was only a cold,my throat hurts and i have a fever.i went to an emergency hosoital n they gave me some medicines.

the second day,i have some spots in my abdomen and fingers ,i thought it was an allergy or chicken pox(i had my chiucken pox when i was 9yrs old)as time goes by my color grew dark and i cant even swallow,i feel so cold.i went to my dermatologist and ask whats happening to me,he told me to get back on the first hospital where i got my first medicine...my dermatologist told me it was like a rare allergy.

so i went back to the first hospital,at that time i was black and i cant even drink a water...it really hurts.the doctor told me that i need to be hospitalized immediately.called my husband and told him evrything.

the doctors told me that i had the measles....but i told them that i had the measles when i was in the elemtary grade.the hospital was small and they dont have a dermatologist around that day(it was saturday)they told me that the dermatologist was coming by monday. that night my fever rose up until 39.0 thought i was goin to die..they dextrose me put some creams.the next day i cant open my mouth...full of blisters...inside it was white all over even my toungue was white.cant drink anything. then came the dermatologist....she told me that its not measles or chicken pox.....she took some skins from my back,my whoile body is a wreck,black spots,with water inside them.

that day my husband and my 2yr old boy came to visit me....my kid cryed because i was really scary....a monster for him.i cried too....i dont know whats happening to me...i cant even hold my sosns hands. the next day the doctor told me that i was going to another hospital....and there the doctors told my husband that i had the sjs.my husband didnt knew what was sjs....the doctors told him that i have a 50% of a chance to be alive.... they took pictures of me....the optamalogist checked my eye the first thing i arrived at the hospital.

i cant even walk thru the toilet so i have to calll the nurse to bring me the wheel chair....after some dextrose and other treatment that the doctors gave me...after 2weeks...i can walk i can eat(baby foods)so nice to be good again....and my son....i gave him a big hug

Name :: Beth Wray Email_address :: sheridansstory@wrayirrigation.com

Story :: Were to start?! First I will start by Praising GOD for His great mercy. He blessed our family so much. Our story starts in November of 2005. Our daughter Sheridan had a ear infection for the first time in her young life. She was 26 months. The Dr put her on amoxicillan, 7 days later we went in make sure the ear was cleared up. It was in her other ear, another round of antibiotics.

This continued on through Nov. and Dec. In Nov after the second round of antibiotics she started to walk funny. I mentioned it to the Drs but they didn�t see anything wrong. On Jan 9th of 2006 she crawled out of bed and collapsed. She would not walk so we took her in and they could find nothing wrong. They said bring her back in two days if she is not any better. On wed we went back she was not better. They sent us to Seattle Childrens hospital for a bone scan. The scan showed a spot in her right knee. They decided it was osteomylitis, even though she had not had fever, any open wound or other things to indicate a bone infection. She was put on high dose cefizalon antibioti . We were there for 5 weeks. In those 5 weeks her eyes started to droop. We mentioned it to the Drs but they didn�t think it was anything. This entire time we had her on glyconutrient supplements, specifically Ambrotose.( Otherwise we do not believe this entire process would not have taken as long.)

Before we were discharged they decided that she had Chronic Recurrent Multifocal Osteomylitis�. She was put on Naprison an NSAID the same as Ibuprofen just a prescription.

They found more of the same spots after she was on the high dose IV antibiotics. We went home on Feb 17th and her eyes continued to get worse. We saw an ophthalmologist and he thought it was blocked oil glands in her eyes. It would go away on it�s own.

In March she started having constant bloody noses, it was like a runny nose just bloody. And also a cough that the rest of our family never got. She didn�t feel good this entire time. On in to April she quit eating. She was only 18 lbs 5ozs. We were concerned and wanted to put a feeding tube in but the Dr told us that they wouldn�t do until she lost some weight.

On May 17 she was walking across our yard and fell on a rock. It fractured her leg. If her bones had been what they should have been that would not have happened.

In May we also went and saw an ophthalmologist in Seattle he looked at her and said this is what I think it is. Stevens- Johnsons Syndrome. I had never heard of it and ask a lot of questions. He told me that he wanted another Dr to look at her that same day. He confirmed the diagnoses. When she lost 2 lbs we took matters into our own hands. One of the Dr�s from Childrens had been in contact with us so we called her back. We went in in June and placed a NG tube.

On June 28th she had a breathing spell where she quit breathing completely . We called 911 and were taken to the hospital here in our town. They thought that she had ,had a seizure because she bit her tongue and her jaw was clenched. At Childrens they decided that her body had just shut down and restarted,much like a computer does.

We were there for 6 weeks. In that time they did a lot of testing. And every time they gave her antibiotics. We kept telling them that it caused her to flare up but they wouldn�t listen to us. Finally the last 2 times they did procedures they didn�t give her anything and she did so much better.

They did a skin biopsy at one point to check for degenerative bone disease. That biopsy showed that she had cicatricial mucous membrane pemphigoid. This is a sub title under SJS, one that they have specifically found. Cicatricial-scarring: mucous membranes-eyes, nose, mouth, lungs, GI tract: pemphigoid- a group of autoimmune blistering diseases. Her eyes had at one point grown together, the top lids to the lower lids. We had stints put in her nose in Aug so that she could breath, through it. When they did that they looked at her airway. They told us that we needed to do some kind of treatment to stop it from closing off. And ending her life. We decided not to do anything. She had been through so much in her young life that we did not want to prolong it and the treatments they were suggesting were in Dr speak OFF LABEL. Meaning they didn�t know what the long-term side effects would be and the FDA did not approve it for the use they were suggesting. We brought her home on Aug 19th against the Drs wishes. Two weeks later to the day she died.

We saw the Dr later and ask it she thought the treatment would of worked as quick as she went and she said no!! That reassured us that we had done the right thing.

She was 2years and 11 months when she went to be with Jesus. That is Sheridan�s story and ultimately ours as her parents. We loved her dearly and miss her everyday. Thank you for reading this and I hope that it helps someone else. If you would like to contact us for more info on any of this please do at sheridansstory@wrayirrigation.com.

We will be glad to answer any questions that you may have. Especially on the CMMP.
I should say to that the degenerative bone test came back negative two weeks after she died. We sincerely believe that it was all connected to a drug reaction. God bless you as seek to continue on with your life.

Name :: Steve Horne

Story :: My wifes brother died 12/25/06 after about 5 days in the hospital with SJS/TEN. He had been diagnosed with cancer in his brain and lung for about 10 months and had gone through cemo and radiation that seemed to work until about November. His doctor gave him 3 months to live and put him on a regiment of drugs. Dilantin was the one that caused his throat to burn and caused a rash on his body. His doctor told him to keep taking it and about a week from his death the ambulance took him to the hospital with severe reaction where he died after suffering with his mouth and tongue turning black and skin falling off.

Name :: lynette Email_address :: llagosteralynette@yahoo.com

Story :: when I was 19 I had an infection which was treated with bactrim, an antibiotic that contains sulfa. I took it on and off for about ten days and I developed a high fever and started to blister all around my mouth. My father rushed me to the ER where I spent the next month in ICU. My mother and father were told that I could die several times but they never gave up hope, I know I survived thanks to them. It was a very hard time in my life, I was a teenager and I lost all my hair, my nails, my eyebrows and at a time when you are so self conscience of everything I lost my self-esteem. It's been 10 years and I have scars all over my body but I am so grateful that I lived and that I am a functioning person I don't think I could have made it witout the love of my parents. There are days where I hate the way I look but I know that God does not burden you with more than you can take so I just go on with my life.

Name :: Sylvia

Story :: I just got back from visiting my mom and dad tonight, and he happened to bring up the story about him having SJS. My dad had SJS in 1963. The doctors were clueless as to what he had. He too was seen by many specialists. A priest even visited him in his hospital room because they all thought he was dying. Being only 26 at the time, he remembers all the nurses crying around him. Then one doctor discovered that he had SJS and he made a full recovery. He had no lasting effects from the syndrome, which is shocking because of all the stories I have read about other patients who have either died, or have lasting side-effects. My dad is very lucky. I can't believe patients are still misdiagnosed today, when they discovered my dad had it in 1963. One thing I want to add was that my mom was in labor with their first child when this was all happening, and so my dad didn't see my brother until 20 days after his birth. I'm glad he recovered, and that he and my mom went on to have three more children, and have been married 45 years. Sylvia

Name :: BETTY LEE PHILLIPS Email_address :: BLPRP@yahoo.com

Story :: I was diagnosed at the age of 20 with Steven Johnson Syndrome. All that I know is that my body is very highly allergic to just about everything. The county that I live in does not have any information on this illness. I would really like to get any and all information on this that I possibly could. THe doctors here don't know anything about it. Please help me get the information that I need to deal with this illness in my life.
Thanks.

Name :: Mark Email_address :: cinmar@frontiernet.net

Story :: It popped into my head to google SJS one day and I�d like to share my story. I�m 49 and had SJS when I was 15. I was hospitalized for about 5 days and don�t remember where 2 of those days went, I must have been semi-unconscious. I was in excellent physical shape at 15, a JV football player and on the first cold fall day of the season I wasn�t dressed warm and of course was quite sweaty in the cold air. The next day I felt like I was coming down with the flu and my condition worsened and I ended up in the hospital. My doctor gave me penicillin which didn�t work and he had time to try one more drug. I�m glad to say it worked because I�m here today, I was in real tough shape. I left the hospital and was so weak I could barely walk! I remember the blisters and the lining in my mouth and urinary tract was severely affected, I suppose my lungs as well. I�m grateful to be very healthy now and I�ve never been sick enough to remember at any other time in my life. I exercise on a concept 2 rower regularly and enjoy outdoor activity whenever I can. I�ve always wondered if my physical condition helped me to survive SJS and what if any long term effect I should be aware of. Other than that I remember very little. For whatever data gathering reasons and just to inform other SJS survivors I thought I�d share my story. Don�t hesitate to email me at cinmar@frontiernet.net if you�d like. Peace, Mark

Name :: Billie jo Shavers Email_address :: bossyhawhyn@aol.com

Story :: My 2 year old is being treated right this minute with SJS. And right now I just need to talk with people who dealt with this SJS. It started as a cold,doctor said hand foot and mouth virus. The next day I took her in to the ER, and was told it was SJS. It's been since 11-29-06,and right now it's so hard I don't know what's going to happen next but I do need everyones prayers. That would help alot. I've been there since the first day and it was hard for me and still is. Days and nights tears and prayers,hurt pain everything. So right now prayer is my answer. Please pray for my baby girl thats all I ask. Thank you. If anyone feels they can help me do so.

Name :: Sharon Shields Email_address :: shieldthedesk@hotmail.com

Story :: I was homeless for the second time in three years. I had made enough money to buy a pair of hiking shoes as my feet were my only transportation. My feet started blistering, huge blisters as a thermal burn filled with clear fluid and some blood. They traveled up the sides of my feet to my ankles and the dorsum of my foot. These lesions were more painful than anything I had felt in my life. Sometimes rupturing them would relieve the pain of the pressure but then the blisters would return with a vengence deeper in the same tissue. I had worked in the health care profession for many years and never had I seen anything like this. I could only guess they were viral. A visit to the emergency room was futile. The physician diagnosed me with chronic fatigue syndrome.
I was told to stay off my feet, that was impossible being homeless and to wash with a betadine solution. Futile. I received some monies and started taking lysine as directed, maybe a double dose. I had chickenpox as a child and my daughter had a moderate to severe case as a four or five year old. Within a few days the pain subsided and eventually the lesions went away. If I remember correctly there was a reoccuranace later and the same treatment vanished them. I do have some eye problems and have not been told that it is related.
Fortunately I have not had a setback of the foot lesions. I will never forget the pain. I was taking only a geriatric multivitamin. Viewing the photos, brought tears to my eyes as I cannot fathom the pain these children and adults were in. I was 45 years old. If there is ANYTHING I can do to assist in this research effort please contact me.
I am unemployed.

Name :: eloisa ortiz

Story :: i started with a severe cough, md said i had respiratory indection. gave me iv rocephin 500mg qd x 7 days, i had a rash, i also had tegretol for seizures. i had severe headaches. all test mri and cat were negative. they said it was migraines. then my eyesight was nere lost. i was having blury vision and a severe rash. i went to get glasses figured it was old age? the eye md sent me to the hospital. said i had pseudotumor. if not treated eyesight lost for good. the eye surgeon gave me acetozolomide, rash was worst they referred me to neuro opti surgeon. he gave methozolomide and topomax, and i was also taking tegretol. i had a rash from my head to my toes, my legs were so swollen with cuts in the skin, i could not walk on them, he told me i have to stay ion this therapy or loose eyesight for good. i had to stop working. i keep complaining my doctor. Finally after to going to er about 15 times. the rash , my inflated body was seeping fluid, i thought i had cellulitis, i have gone to several specialist. they gave me solumedrol iv and benadryl iv in the er and let me go. i still was not well. i felt like i was dying when i layed down. i had to pick up my small son just 8 yrs old from school. and its was hard to put shores on or walk. my feet so swollen i took a step and felts jolts of pain in each step. li did not was to eat just drink i could not wear clothing because of my skin. i wore a hospital gown they gave me. it is a horrible thing. i knew nothing about this illness, its gone down, but i still get the allergic spots red, purple, and swelling, flaky skin . and not much help my the mds i have seen, i fell like some of the md i have seen do not want to talk about it. it seems like they thought i was trying to blame or sue and beleive me i just wanted information and treatment to be well. and i needed information. so i started pulling all medical records i could. and i am looking up any treatments. for my skin that fell off.

Name :: James Halcott Email_address :: halco@optonline.net

Story :: LIVING WITH SJS

I HAVE HAD SJS FOR OVER THIRTY YEARS AND HAVE HAD HUNDREDS OF EPISODES. I HAVE HAD THIS DISEASE FROM HEAD TO TOE INSIDE AND OUT. I HAVE READ A FEW STORIES ON THIS WEB SITE FROM PEOPLE THAT HAVE HAD IT MORE THAN ONCE. THE PHYSICAL AND MENTAL ASPECTS OF THIS DISEASE ARE DEVASTATING. ONLY A PERSON WHO HAS FELT THE PAIN AND THE EMOTIONAL TRAUMA THIS DISEASE INFLICTS CAN UNDERSTAND THE THE FEAR AND ANXIETY A BODY FEELS WHILE HAVING AN ATTACK AND AFTER IT IS OVER. THE FEAR THAT MAY COME BACK BECOMES AN OBSESSION, EVERY LITTLE ITCH,SPOT ON YOUR SKIN OR A FEVER SENDS YOUR MIND REELING BACK TO WHEN YOU HAD YOUR ATTACK OF THIS HORRIBLE DISEASE. I'M SURE YOU KNOW WHAT I MEAN ABOUT THE FEAR THAT IT MAY HAPPEN AGAIN. FOR A FEW OF US IT'S NOT A MATTER OF IF IT COMES BUT RATHER WHEN WILL IT COME BACK. I HAVE HAD YEARS THAT I SPENT MORE TIME IN HOSPITALS THAN OUT. I WAS PUT ON PREDNISONE AND BECAME DEPENDENT ON IT. THE PREDNISONE SIDE EFFECTS BECAME SO BAD THAT I DIDN'T KNOW WHAT WOULD KILL ME FIRST THE DRUGS OR SJS. THE WITHDRAWALS FROM PREDNISONE ARE EXTREMLY PAINFUL AND IT SEEMS LIKE THE PAIN WILL NEVER END. BE VERY CAREFUL WITH THE STEROIDS, IF YOU FIND YOURSELF TAKING A MAINTANENCE DOSE, BY THIS I MEAN TAKING THE SAME DOSE EVERY DAY AND NOT TAPERING OFF THATS WHEN THE SIDE EFFECTS BEGIN AND THERE ARE SO MANY SIDE EFFECTS, SOME YOU CAN FEEL AND SEE AND SOME YOU CAN'T. SO BE AWARE OF THE SIDE EFFECTS AND IF YOU EXPERIENCE ANY OF THEM DO WHATEVER YOU HAVE TO DO TO TAPER OFF STEROIDS. I ALMOST DIED COMING OFF PREDNISONE BUT I KNOW I WOULD NOT BE HERE TODAY IF I DIDN'T.

I HAVE HAD THIS DISEASE SO MANY TIMES AND HAVE HAD EVERY TEST YOU CAN THINK OF TO FIND THE CAUSE WITH NO LUCK AT ALL. SO I HAD TO LEARN TO LIVE WITH IT AND FIND A WAY TO LESSEN THE SEVERITY OF THE ATTACKS AND TO SOME EXTENT HAVE GOT IT UNDER CONTROL.
I NOW KNOW THERE ARE SOME SIGNS THAT I GOING TO HAVE ANOTHER EPISODE ABOUT THREE WEEKS BEFORE THERE ARE ANY VISIBLE SIGNS. IT BEGINS WITH FEELING FATIGUED OR JUST A LITTE TIRED AND A LOW GRADE FEVER THAT YOU WOULD NOT KNOW ABOUT UNLESS YOU TAKE YOUR TEMP. AT THIS POINT IF I GET PLENTY OF BED REST I CAN SOME TIMES AVOID A FULL BLOWN ONSET OF SJS WITHOUT ANY DRUGS, BUT IF IT CONTINUES I THEN BECOME LITHARGIC AND HAVE ACHES AND PAINS I GUESE YOU WOULD CALL IT FLU LIKE SYMPTOMS THEN I BEGIN TO FEEL AS IF MY HANDS ARE BEING STUCK PINS AND THERE STILL NO LESIONS VISIBLE. THE MY MOUTH STARTS TO STING LIKE I BURNT IT ON SOMTHING HOT STILL NO VISIBLE LESIONS BUT I CAN FELL THE LESIONS BEFORE I CAN SEE THEM AND THEN FEELING LIKE I AM BURNING UP INSIDE EVEN THOUGH MY TEMP. IS ONLY ABOUT 99.2 OR SO
THE BURNING SENSATION IS ALMOST UNBEARABLE AT THIS POINT. THEN MY EYES START TO BURN AND ICH AND I HAVE RINGING IN MY EARS AND THE HEADACHE HITS ME AND STILL NO VISIBLE SIGNS OF SJS OTHER THAN MY TONGUE AND THROAT ARE RED. I HAVE BEEN TO SO MANY DOCTORS WHEN I WAS FEELING LIKE THIS AND THEY THINK YOU ARE CRAZY OR EXAGGERATING YOUR CONDITION AND I CAN HONESTLY SAY NONE OF THEM HAS EVER TREATED SOME ONE WITH SJS OR ERYTHEMA MULTIFORMI OR TEN AND DO NOT KNOW HOW SEVERE IT IS ABOUT TO BECOME ONCE THE SKIN LESIONS START. I HAVE FOUND THAT DOCTORS DO NOT WANT TO PRESCRIBE STEROIDS UNTIL I AM COVERED IN TARGET LESIONS AND BLISTERS AT THIS POINT IT IS TOO LATE AND I WILL SUFFER FOR MONTHS AND HAVE TO TAKE ORAL STEROIDS AND DEAL WITH SIDE EFFECTS AGAIN. I HAVE FOUND THAT AT THE FIRST SIGN OF A SKIN LESION IF I GET A ONE TIME LARGE INJECTION OF ABOUT 200 MG OF CORTISONE OR OTHER STEROID AND GET A LOT OF BED REST THAT IT STOPS THE BLISTERING AND I AM BACK UP AND RUNNING AGAIN IN ABOUT A WEEK OR SO. IT IS VERY IMPORTANT THAT YOU FIND A GP OR DERM DOC AND STICK WITH THEM. THE PROBLEM I HAD WAS THAT I WOULD GET SJS AND WAIT UNTIL IT WAS SEVERE AND GO TO THE ER AT THE HOSPITAL AND ALWAYS GET A DIFFERENT DOCTOR AND ALL THEY CAN DO IS PUT YOU ON PREDNISONE BECAUSE THEY DON'T KNOW WHAT ELSE TO DO. I HAVE FOUND A DOCTOR THAT WILL GIVE THE CORTISONE INJECTION WHEN I SAY I NEED IT AND NOT WAIT UNTIL I AM SWOLLEN OR COVERED IN BLISTERS. BEING TREATED WITH A ONE TIME CORTISONE INJECTION AT THE RIGHT TIME HAS MADE A WORLD OF DIFFERENCE IN MY LIFE. THIS DISEASE HAS HAS MADE MOST OF MY LIFE A LIVING HELL. I HAVE BEEN HOMELESS MORE THAN ONCE BECAUSE OF THIS DISEASE I HAVE HAD FRIENDS THAT WERE SCARED TO DEATH TO COME NEAR ME IN FEAR OF GETTING THIS GOD AWFUL DISEASE.

IF YOU SUFFER FROM SJS OR KNOW SOME ONE THAT DOES I WANT YOU TO KNOW THAT YOU ARE NOT ALONE. DON'T SUFFER IN SILENCE LIKE I DID BECAUSE YOU FEEL LIKE NO ONE UNDERSTANDS. IF YOU NEED TO TALK AND I KNOW YOU DO JUST E-MAIL ME AT halco@optonline.net AND I WILL BE GLAD TO HELP IN ANY WAY I CAN, EVEN IF IT'S JUST TALK IT CAN HELP.
BEST REGARDS
JIM HALCOTT

Name :: Kim Larimore Email_address :: KBLarimore@aol.COM

Story :: MY FATHER WENT INTO THE HOSPITAL FOR VALVE REPLACEMENT. THIS WAS SUPPOSED TO MAKE HIS LIFE BETTER. INSTEAD HE DIED.

SOMETHING WENT WRONG. THE SURGEON STATED THAT WHEN HE OPENED MY FATHER UP, HE STARTED "OOZING" (????) HE HAD TO MAKE A DECISION ON WHAT TO DO...HE DECIDED TO GO AHEAD WITH THE SURGERY. THAT WAS THE FIRST THING THAT WENT WRONG. THE SECOND THING WAS, BECAUSE MY FATHER WAS ON THE BYPASS MACHINE SO LONG, HE DEVELOPED SYSTEMIC INFLAMMATORY RESPONSE SYNDROME. HE MADE IT THROUGH THE SIRS SOMEHOW. NUMBER THREE...ABOUT TWO WEEKS AFTER HIS SURGERY, WHILE STILL IN THE HOSPITAL, HE STARTED BREAKING OUT IN A RASH. IT STARTED IN HIS ARMPITS AND RAPIDLY PROGRESSED. WITHIN A DAY OR TWO, HE HAD HUGE BLISTERS ALL OVER HIS BODY AND HIS SKIN BEGAN TO JUST PEEL AWAY. SJS WAS SUGGESTED, ALTHOUGH A BIOPSY WASN'T DONE. THE DOCTORS THERE TREATED THE SYMPTONS AND REMOVED SEVERAL OF HIS IV MEDS. HE WAS TRANSFERRED, BY AMBULANCE, TO ANOTHER HOSPITAL FOUR HOURS AWAY TO HOPEFULLY RECEIVE BETTER MEDICAL CARE. NUMBER FOUR...NO ONE SEEMED VERY CONCERNED ABOUT HIS BLACK, CRUSTY MOUTH. BY THIS TIME IT IS FIVE WEEKS POST SURGERY. MY FATHER WAS EXTREMELY MALNOURISHED BECAUSE HE COULD NOT EAT OR DRINK. HIS KIDNEYS STARTED FAILING. THE DOCTORS STATED THAT IF HE DID NOT (NOT COULD NOT) EAT SOON THAT THEY WOULD HAVE TO INSERT A FEEDING TUBE. HIS HEALTH RAPIDLY DECLINED. HIS DOCTOR FINALLY, AFTER NINE MORE DAYS, INSERTED A FEEDING TUBE. TWO DAYS LATER HE DIED FROM A HEART ATTACK. I WILL NEVER FORGET HOW HARD DADDY FOUGHT TO LIVE AND I WILL NEVER, NEVER FORGET HIS DOCTOR'S NEGLIGENCE. MY DADDY SHOULD NOT HAVE DIED!

Name :: darrian robinson Email_address :: darrian2005@myway.com

Story :: well in a nut shell. they sent me Copestone. they were trying to find a medocation for bi-bolar. they tried me on several meds. they ended up giving me lamental,trilaptal, and seroquel, they afterword:l days later i was experencing side effects. so they got so severe reactions. first time i my eyes were swelling so much. so eventrally it swell so big.so i called the emergency police, they sent the ambulance. they said that i was probably get over a coldand i had a UTI. blisters started to form on topmy face they said that i was having a MILD alergic reaction, they gave me Benadril and told me to go home.. so i call them again. th is time i just came from waking up, my eye won't open all the way.so i yelled for my sister. she helped me up because i couldn't get up from myself. she took me into the bathroom to where i could see.she helped me on the toliet.blistes were up and down my legs. i could feel my throat closing so my sister yelled for my mom. they kept me for 3 days. my mom and everybody else felt as though they were doing their job. so they sent me to NC baptist medical center where they took care of me. and where i got better.

for every one whose been throgh it or going through it.... god bless!!!!!!!

Name :: jesse

Story :: i am 13 years old and my brother got the flu. He quickly recovered and a few days later I started to feel awful. my parents atomatically thought it was the flu, even though i got my flu shot. by the weekend my mom knew something was not right i was not getting better, and i felt even worse. On saturay or sunday my mom took me to a walkin clinic for a strep test. The doctor said that the strep test was negative and that i had a sinus infection. He gave us prescriptions, but i never felt better. By tuesday i looked and felt awful so we went to my pediatrition. my doctor looked at me and said that i need to go to the ER and get a bag of fluids, because i was extreamly dehidrated. She listened to my lungs and told us i will need an x-ray to check my lungs because she heard pnemonia in my left lung. we went strait to the ER and i had documented pnemonia, they gave me an IV and i got fluids and an antibiotic. I looked so much better, and i ate and drank fine. so they sent me home. the antibiotic wore off after 24 hours and i started to feel horrible. my chapped lips turned into huge lips with blisters all over. later that night i started to get blisters and sores all over my mouth, i did not think it was a big deal at the time, but it hurt so much because i have braces. My throght started feeling awful, it also hurt to swallow. I could not sleep at all, because i was so uncomfortable. the next morning i went to the doctor again. when she was doing the usual check ears and mouth, she said "oh my gosh". i had blisters of all sizes down my throght. shee diagnosed me with stevens johnsons syndrome. i was sent to the ER again. i got another IV and got antibiotics and morphine to ease the pain. i was moved to an actual room and i woke up, i had a blood stain from where my mouth had been and my lips were covered in blood. waking up was awful because my pain would build up and then when i woke up it would be at extreme levels. throughout my 16 days at the hospital i had 7 IV's and a picc line.they gave me seriroids for my blisters, nutrition since i had not eaten in 2 weeks, and much more. my expirience was awful, but now i am home still not at school, with pnemonia.

Name :: Julian Hagen Email_address :: julian_hagen@yahoo.com

Story :: Greetings!
My father is 85 years old and has been diagnosed with SJS. I won�t go through all of the details/ drama/ scares/ incompetence at this time but do have a question. My father itches constantly and of coarse is miserable. The doctor prescribed an antihistamine called HYDROXYZINE. First it was 10mg 4x a day � no help. Then 25 mg 4x a day - no help. Now 25 mg 3x a day and 50 mg at night. Not much help with itching but he is sleeping and his mouth is like cotton. We also apply aquaphor or hydrophor which helps a little momentarily. Any suggestion on a better antihistamine or are they all the same? Any help/ suggestions would be appreciated. Thanks so much. Julian

Name :: BETTY JEAN CELESTIAL Email_address :: bettyjeancelestial@yahoo.co.uk

Story :: MY HUSBAND,GILBERT,35 YEARS OLD HAS A CONGENITAL ABNORMALITY CALLED CAVERNOUS HEMANGIOMA AND EXPERIENCED PETIT MAL SEIZURE.LAMICTAL 25 mg WAS PRESCRIBED.AFTER 3 WEEKS OF TAKING THE MEDICATION,HE DEVELOPED SMALL ULCERS IN HIS MOUTH,SORE THROAT.WE WENT TO SEE THE DOCTOR ON 24JANUARY AND AMOCLAN 250/125mg WAS PRESCRIBED.HE IS STILL TAKING LAMICTAL BY THAT TIME.AFTER 5 DAYS OF TAKING THE ANTIBIOTIC,HIS EYES WERE SO RED AND LIPS WERE SWOLLEN,AND HIS CONDITION BECOME WORSE. WE SOUGHT ANOTHER GENERAL PRACTITIONER'S(GP)ADVICE ON 28JANUARY,AND HE DIAGNOSED VIRUS INFECTION(HERPES)RIGHT AWAY AFTER SEEING THE ULCERATION IN GILBERT'S MOUTH. THE TINY PINK RASHES HAS STARTED TO APPEAR ON HIS TUMMY BY THAT TIME. THE DOCTOR DID NOT EVEN DO SOME BLOOD TESTS OR MAKE A REFERRAL TO THE DERMATOLOGIST OR EVEN ASK FOR GILBERT'S OTHER MEDICAL CONDITION. IN OTHER WORDS,HE DID NOT SUSPECT OF ANY DRUG REACTION. ON 30JANUARY ,WE WENT BACK TO SEE OUR OWN DOCTOR,AND HE DIAGNOSED STEVENS-JOHNSON SYNDROME. HE WAS REFFERED TO THE DERMATOLOGY CASUALTY,BIOPSY OF HIS SKIN WAS DONE.HE WAS SEEN BY THE EYE DOCTORS TOO AND STEROID DROPS AND ARTIFICIAL TEARS EYE DROPS WAS PRESCRIBED. HE WAS THEN ADMITTED TO THE HOSPITAL. PRESENTLY,HIS EYES ARE NOT AS RED AND SWOLLEN AS BEFORE. BUT HE COULD NOT EAT. HE ONLY MANAGED TO DRINK MILK, WATER AND SOUP. THE ULCERS IN HIS MOUTH AND LIPS ARE SO TERRIBLE.i COULD CRY WATCHING HIM SUFFERED THAT WAY. HE COULDN'T TALK. IT'S VERY PAINFUL HE SAID. HE IS ON IVFLUIDS. SOME OF THE RASHES STARTED TO DEVELOP BLISTERS BUT SOME RASHES HAS STARTED TO DRY UP. AND THE RESULTS OF THE SWAB CAME BACK NEGATIVE FOR ANY INFECTION.i'M JUST HOPEFUL HE WILL NOT DEVELOP ANY INFECTION DURING HIS STAY IN THE HOSPITAL.

Name :: sue Email_address :: caromendel@yahoo.co.uk

Story :: I am a 37 year old, healthy [until now]woman. I started to feel very ill about 4-5 weeks ago, I felt dizzy and nauseaous, had a headache that wouldn't go away and felt exhausted, i took a solpadol a friend gave me, which contains codeine, and some nurofen medicine before i went to bed, i have never taken either of these medicines before About a 8 days later i went to a restaurant and ate some food and thought I had burnt my tounge,I have now learnt that was one of the warning signs of the onset of SJS.
The following day i noticed I had a painful spot in my ear, which I tried to squeeze, and fluid came out of , I asked my husband to take a look and he remarked that it looked strange, as if it had left a hole and it was weeping. The next morning i woke up to find my eyes were filled with white gunk and i had difficulty in opening them, they felt gritty and were bright red, my throat and mouth felt as if it had been skinned and my tounge,throat and gums had painful ulcers on them, it was also painful to urinate.
I knew something felt very wrong and took myself off to my doctor, who examined me and because of the triad of symptons that had suddenly developed, concluded it was either behcets disease or SJS, he took a blood test,urine sample and swabbed my eye and i was given a anti inflammatory and an indigestion medicine. when the results came back my doctor concluded yes, I did have SJS but admitted that had never actually seen a case of it and wanted a second opinion.
I was immediately sent to a dermatologist who specialised in SJS, he examined me and agreed I had experienced a medium attack of SJS.
I was very lucky as i did not experince any rash or anything at all on the outside , but can feel that the inside of my body and throat have not been so lucky, I feel very sore and as if i have been run over physically and mentally. this is my second week in bed and i am still exhausted and in pain.