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Thursday, December 13, 2007

My daughter is a survivor of Steven-Johnson Syndrome

I am a mother of a survivor of Stephen-Johnson Syndrome. My daughter had just turned one when she had it, and I almost lost her. It was a very horrifying experience, and I know that it is a need that the public should be informed about this disease.

Steven-Johnson Syndrome or SJS is an allergic reaction commonly caused by medicines. Also, certain viruses and bacteria could also cause this disease. In the case of my daughter, her SJS was caused by a medicine against amoeba-Metronidazole. I never expected it, and never did I think that my daughter will have it. Metronidazole is the drug of choice for intestinal amoebiasis . In fact the children of our pediatrician were also under metronidazole medication when my daughter was taking it.

SJS is characterized by rashes or lesions which involve the skin and the mucous membranes. This includes the insides of the eyelids and the eyes, nose, mouth, ears, and for females, the genitals. The rash usually appears days or even weeks and months after the initial intake of the medicine and starts within the head area. It could be on the face or at the back of the neck. For some the rash starts below the eyes. It would appear like a swollen eye bag, or even like a black eye because of its deep red color. In the case of my daughter it started at the back of her neck. It appeared like a scaly dark red, almost black patch just below her hairline. It appeared 3 days after her initial intake of the medicine. She was prescribed to take it for 7 days, and it was on the label that rashes may appear during the intake. So I did not worry too much. But a mother still I am, I wanted to be sure. So I went to the doctor and he told me his kids had it too and it will go away after she’s through with the prescription. So since the doctor said no worries, I forgot about it after we’re home from the doctor.

A day after we went to the doctor, my sister noticed that when my daughter woke up she had swollen eye bags. I have never heard of SJS before and also there was nothing about SJS in the label of the medicine. I thought the swelling was just caused by her crying the past night. So I did not give too much attention on it. When I prepared to give her a bath at nearly lunch time I was alarmed to see that the swelling covered a larger area, and its color turned deeper red. After giving her a bath, we rushed to the hospital. Her doctor was not around that day so she was seen by another. They gave her anti-allergy drops and assured me that there is nothing to worry about. I don’t know but inside I was not convinced that there was nothing to worry of. A mother’s instinct is always right, barely 12 hours after seeing the doctor, around midnight my daughter would not stop crying. She didn’t want to lie down, and she’s turned red all over. I know that she can’t breathe anymore as evident to her not wanting to lie down. And apparently her whole body was sore because she didn’t want me to touch her and hold her. And she was so hot. I know something’s just not right, the drops did not work. Her rashes, instead of subsiding, it went worse. I called my mom and to the hospital we rushed. In the hospital the doctor who saw us the other day had no idea what was wrong, but still he had her injected with non-steroid anti-allergy drugs, with antibiotics. Still she did not turn well, instead, her skin started to slough off as if she bathe with boiling water. It was painful for her to urinate, even cry. Every inch of her body was blistered! I was so grief-stricken; I didn’t know what was happening with my daughter! When the doctor was informed on what was happening, he referred my daughter to another doctor, an allergy specialist. There I learned about SJS. And that time my daughter is already in critical condition, hours more and everything would almost be too late. They gave her lots of steroids and antibiotics. I know that steroids is harmful to babies so while on medication, I gave her aloe vera gel so that her body will have a fight against the harmful effects of the steroid. Also, I used aloe vera gel as a topical lotion to soothe her blistered, almost burned skin. We stayed in the hospital for a week, and the doctor was so amazed with her fast recovery.

My daughter is now 3; it’s been two years since that incident. Looking at her, none would think she is a survivor of SJS, because she’s only left with small keloids on her stomach.

SJS is an allergic reaction that involves the whole body. It is fatal and most survivors suffer a lot of pain, suffering, distress, and lifelong debilitating effects, both from the trauma to the disease itself and the scarring that it causes. For most survivors, they are left with permanent scarring due to the skin’s sloughing off during the course of the allergy. Some are even left blind, and deaf. That is why it is important to know the facts and helpful remedies and what to do’s of this ailment.
~*~

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37 comments:

Lexi said...

hi, thanks for sharing your daughter's story. my sister had sjs last december. fortunately, her drs diagnosed her immediately. she doesn't have any permanent side effects and only needs to rest for 1 month. in her case, we don't know what caused sjs because she wasn't on any medications. anyway, i'm glad that your daughter is now healthy. cheers!

Anonymous said...

I had never heard about this till I read this blog, sounds like a terrible thing to have and something we should all be aware of. I am so glad your daughter recovered from this.

Anonymous said...

My daughter was just prescibed a medicine to treat a skin infection that she developed due to an insect bite. I was reading the posible side effects and saw that it listed SJS and I hadn't heard of it. As i was watching t.v and researhing SJS a 11 year old girl is in court suing MOTRIN for her case of SJS. Now I am afraid to give my child this medicine and don't know what to do since a lot of medicines can cause SJS. I am glad that I read this blog because if I do decide to give her the medicine I can be aware of the symptoms and be alert as to what could happen to my child. I am so greatful that your experience turned out to be a happy ending and that it was able to enlighten me.

Tiffany Worrill, Moreno Valley CA

Anonymous said...

My husband, 58, is in the hospital now with SJD, it took 48 hours for them to diagnose. He has the rash over his entire body, mucousitis, interior of mouth has "sloughed off,"
mouth is very blistered, hands and feet are purple and red. Hard to walk on feet--they started the amagolbulin, vitamins. His lips keep bleeding and scabbing, hard to eat. I am very concerned about a secondary infection. I just lost both my parents within a 2-year span and while they were hospitalized they contracted multiple infections. I tried an essential oil, pure organic, frankincense and it seemed to give him a boost. I wonder how long it will take for him to recover and return home. The onset of this disease was just fever, mouth swelling, thrush and tongue swelling. He was diagnosed with apthous stomatitis (forgive my spellings) and then began taking augmentin. Then the rash appeared three days later.

Anonymous said...

http://en.wikipilipinas.org/index.php?title=Roselle_R._Ambubuyog
a link to an inspiring sjs survivor.

Anonymous said...

Hello, I am a SJD survivor I had it when I was 16yrs and I am now 33. I started to have it in my eyes the nurse at school sent me home saying I had pink eyes. For me it wasn't painful only to swallow my saliva. The doctors told my parents that it was rare to have a 16 year old having it. I was in the hospital for 1 month. The doctors treated me like I was burned because I had blisters all over my body inside and out. It was more common for infants and older people. My nails fell out completely, they said that I am missing 12 layers of nails. They will never grow back. The doctors also mention to my mom that I could have been blind or had a chance of dying. They were very surprised at the way I was reacting to it because I never had any pain. When I had my second child I went in to see what medicine would be the one that gave me the SJD. But when I went in they asked me what causes this two medicines I told them SJD. They were worried and said sorry we cannot due any test once you have SJD we don't like to mess with it. It is a very scary time for someone to go through that. As I was reading the blogs about Motrin, it brought back so many memories for me. I was taking peniciline and a medicine called Tegretol-( for kids that get seizures) I never had seizures but the doctor gave it to me for the swollen on my knee. So they think that the mix of the two medicines caused me to get SJD. You do have to be careful what you give your children but every child is different. Congratulations on you child doing better now. Doctors need to exlain to new parents about SJD so they can be prepared for it, not that it will happend to every single child but have an idea what SJD is.

Unknown said...

my 10 year old nephew has steven johnsons syndrome. He is suffering so much. his skin is all burnt, his eyes are shut, his mouth bleeds, he has pneomonia and kidney failure...

He is in a hospital in Mexico City but the doctors dont know what to do....i was wondering if you know about a hospital here in the United states where he can be transfered and be saved?

thank you

Anonymous said...

hello my names laura.
im a SJS survivor im 14 and just came out hospital this week it is the most pain i have ever been though. due to taking tegretol and its supporting to hear otheers stories of the experience with it. the doctors found it hard to diagnose me as its such complicated. i was given vigam and steriod oinments for my body and for my scalp and emulsifying cream to bath in. its horrible how it begins i agree it works its way from head to toe and thats how it flushes it out also. i'm partialy deaf and blind now because of this.it will scar me for my entire life i would never wish this on anyone.

Anonymous said...

I am also an SJS survivor. I had it in '93, just 5mos after having my second son. I'd been on several antibios for a stubborn ear infection & the last was Bactrim. I am diabetic since '75, so SJS was a 2x whammy for me. I blistered inside & out, like being dipped in a chemical. Was deep blotchy red w/small white areas. Mouth sloughed out many times, roof of mouth came loose twice & had to be cut loose from around my teeth. Inside eyelids blistered & if not for putting moisture drops in myself, my lids could have adhered to my eyeballs. Still have effects from the scars left. The soles of my feet came off & I lost about 70% of my hair.. didn't fall out w/root attached.. just fell out as if cut (seared?!) at the scalp. Scalp peeled for weeks. Lips are scarred. Skin is horribly sensitive & randomly reactive. Eyes are super-sensitive to light. I developed staph during my 2+wks in hospital & a raging yeast infection that took a week of high-dose Diflucan to beat. Was on Morphine for pain the entire time. Couldn't eat b/c of blisters & lost almost 20lbs while in hosp. Developed deep horizontal ridges, one on each, in my nails.. showing the "burn line" of SJS.
I had taken meds for about 2 wks before the attack so not sure if it was soley Bactrim or not.
To Laura.. if not for my own attempts to keep the gritty dryness from my eyes, I would be blind or partially, too. The eye specialist Rx'd a moisture ointment that I had to use for months.
Nurses who had no clue what they were dealing w/used tape to apply Vaseline saturated gauze to the hamburger that my back had turned into... which got embedded. My doc finally got it out & even w/o scars there, thank God! It is totally like being burned from head to toe. If not for a blizzard, doc would have transferred me to a hosp. w/a burn unit.
I am blessed to be alive. This is a horrible "disease", disorder, allergy, whatever... People should be extremely careful when taking meds... don't be AFRAID of meds, but be EXTREMELY CAUTIOUS!! Always look out for any, and I mean ANY sign of rash ANYWHERE! I always warn any news docs of my SJS experience AND I even tell my (now grown!) kids' doctors b/c they have had some rather quick reactions to certain things... I ALWAYS keep Benedryl on hand. My dh has become really allergic to really random things & I've even had him use my steroid inhaler when once he reacted w/throat swelling. I think it probably kept him from the ER!
All that said to say this... BE CAREFUL AND ALERT TO ANY SIGNS OF THIS SYNDROME!
God bless!

Anonymous said...

Oh... meant to say... it took me approximately two years to "completely" (as completely as possible b/c you're never really "the same" after SJS) from this. To get to where I felt more normal anyway.. it took about two years.
After 16 years, I still sometimes refer to things as "BSJS" & "ASJS"... Before & After SJS.

THAT is how life altering it can be.

Anonymous said...

i have just come out of hospital with sjs i have been in for 2 weeks and was finally discharged they didnt think i was going to survive at fisrt and wish anyone who has it the best of look in getting over it as you can get over it it will still take me a while im still raw etc but you got to keep strong.
good luck all

zayuhKAY! said...

thanks for sharing your experience..it does help a lot..I do agree with you that some medical doctors claimed it as very rare - the main reason they do not delve much on it which consequently, resulted to increased mortality rates for those who had/have it (which should not be the case!)

Linda said...

My name is Linda and I am going through SJS now. I had a kidney removed and was perscribed an antibiotic with sulphur in it which I am alleric to. I listed on my medical records as being alleric to sulphur. The allergic reation caused me to go into respitory failure and was in ICU for 5 weeks. I am still having problems. My hair is now falling out. I have lost 60+% of my hair and it is still falling out. Can anyone tell me if it will come back and how long it takes? Thanks for listening.

Unknown said...

Hi,

its horrible, my sister had it too but the scars are still there could anyone suggest any solution to get rid of the scars????

mumford said...

My daughter was diagnosed with this disease when she was only 3 months old.. I thought we were going to lose her. They had her in isolation and had all these doctors hovering over her.. But that was 43 years ago.. Thank God she survived and has had no problems since then.

Anonymous said...
This comment has been removed by the author.
Anonymous said...

It's been good to read about lots of you who have survived SJS. I lost my mum to the more severe form of SJS called Toxic Epidermal Necrolysis just last month. She had been in the Intensive Care unit for just under 6 months and bravely fought this horrific disease for all those months. The disease had attacked her lungs, something they say is rare but it obviously does happen. I would like to wish anyone with this disease the best of luck and ask them to keep thinking positively.

Anonymous said...

I just today was discharged from hospital with SJS i am a TWO time survivor of this which is just an awful thing, i wouldn't wish it upon even the worst of people. It truely is life altering your never the same after and they still dont know what my triggers are so i am scared everyday that i will be back in the hospital this time they had told me that i had about a 5% chance of surviving it because it was a second uccurance! it gets lower with the more times you get it apparently. It is one of the most terrifying painful and traumatizing things of my life, i now have 49 doctors for this. i just started high school im 15 and i cant live life the way everyone else can because of this.

Anonymous said...

I DEVELOPED SJS AFTER TAKING TEGETROL FOR TRIGEMINAL NEURALGIA. I HATE A SERIOUS RASH SWOLLEN LIPS AND COULD NOT SWALLOW FROM LESIONS IN MY THROAT. I WENT TO THE ER 3 TIMES AND TO MY MD 5 OR 6 TIMES BUT WAS REFUSED ADMISSION TO THE HOSPITAL. (WHY I STILL CANNOT FIGURE OUT) AT MY SECOND VISIT I WAS ORDERED TO GET AN EPIPEN SINCE MY THROAT WAS CLOSING AND I HAD A HARD TIME SWALLOWING. (NO ADMISSION) I HAD ER DRS PUT ME ON PREDNISONE ONLY TO HAVE MY MD TAKE ME OFF OF IT. AT MY LAST ER VISIT I WAS SURE I WAS GOING TO DIE. THE ER DR THIS TIME WAS SO RUDE AND SAIDWELL WE ARE NOT GOING TO BE ABLE TO TELL YOU WHAT THIS IS. YOU WILL HAVE TO SEE AN ALLERGIST. REALLY? THANK GOD THE NEXT DAY I DRUG MYSELF TO THE ALLERGIST AND WAS TOLD I HAD SJS. THIS MAN HAS HAD HIS PRACTICE FOR MANY YEARS AND HAD NEVER SEEN A CASE AS BAD AS MINE. I JUST CANNOT BELIEVE I CROSSED SO MANY MEDICAL PROFESSIONALS(AND I USE THAT TERM LOOSELY) AND NOT ONE COULD HIT ON SJS.WATCH OUT AND BE YOUR OWN ADVOCATE OR YPU WILL BE LEFT TO DIE.

Anonymous said...

It is good to read about survivors of SJS. My family and I were not so lucky. Our dear Mom died from this horrible disease and its has been devastating for us. She was taking medication for gout that she had developed. We were actually relieved when she passed away because she was in so much pain.
She was a retired nurse of knew well of the disease so imagine knowing you're going to die and watching your children watch you die. It's almost more than we can bare. Keep us in your prayers.

Anonymous said...

Hello everyone!
I am an SJS survivor. I contracted pneumonia when I was 10 years old back in 2002 and the doctors prescribed me the antibiotic Zithromax. Within two days I was covered in painful itchy blisters, unable to eat or drink anything. My parents rushed me to the hospital and luckily the doctors recognized SJS quickly. They hooked me up to an IV and tried to flush the drug out of my system as fast as possible. Over the next ten days in the hospital I came very close to losing my life; unable to walk, unable to eat or drink, unable to sit/lye down without getting restless. I developed a severe case of Phlebitis in my left arm. The doctors tried many things to keep me alive such as breathing medications, back vibrators while i was upside down (to break up the build up in my lungs from the pneumonia. This usually ended up with me throwing/coughing up blood and phlegm.) By the Grace of God I began to gain my strength back and was able to walk out of my room and back to bed. The time came for me to go home and I began a three-month-long period of recovery.

I am almost 18 now, and I am currently attending a private Christian school for a degree in Engineering. I have been active in track (1600m, 800m, 100m), indoor soccer, basket ball, baseball, and weightlifting. I have never felt better!!!

-I give all the credit to God Almighty, who cares for his children, and hears their prayers. And I would like to say to anyone out there who reads this: If you have gone through SJS or TEN, If you are currently going trough SJS or TEN, OR if you know someone who is/has gone(ing) through SJS or TEN... Then know that God loves you, and that I am praying for you.

(P.S. I still have the scars from the blisters, and probably will for the rest of my life... But may I suggest that you leave at least one area of scarring to remain, that way you will have a kind of battle wound that can remind you of what you've gone through. They may also serve as an encouragement to those suffering from this terrible disease.)

My name is Sam,
May God bless you and keep you!!!!!!

silver back said...

thank you for this article,it's been a year since SJS hit me. . last june (2009) i was battling for my life in a hospital . . but by september i was up and back to dance school doing everything the others were doing. worked through ballet classes with my toe nails coming off. and horrible scars all over including my face .a year later i see that my immune system has taken a big hit . dry eyes, photosensitivity, dry skin and the scars still linger attracting alot of attention in public. had to discontinue my dance due to utter weakness . . hypothyroid condition,anemia and well anything else my body chooses to pickup on the way. i am desperate to be able to tlk about it to someone who knows what i am saying. . thatnks for this post.
god bless and good luck to all of you.
we're not alone and i know how brave you guys are . . and what it takes to survive what we did and keep going :)

Unknown said...

i had it when i was six it was really hard i didnt know what was going on and i tell people this they don't believe me im glad i know of someone else who survived it.

Anonymous said...

Thanks for sharing.. Couple of weeks back I've heard that one of my friends daughter got SJS and this is the first time I've heard of it. I'm glad that your daughter recovered. You have put up some helpful information here.. thanks a lot.

monica said...

thanks for sharing.....now my mom is having a SJS about 2 months im looking for the best medication since she's old 65 years old she's always complaining itch and scaring.... our skin doctor gave us ointments, creams, and solution to clean.
i'm concern about our health too is SJS Communicable disease?

TiShAz PaGe said...

im a 17 year old girl and i am a survior of steven johnson syndrom and ik how it feels to have it when i went to the hospital the doctors didnt know if i was going to survive becuase when i went it i culdnt breath ihad it since age 5 and i stil have the effects (like skin iratation) i wouldnt even made it without ma mom and ma family being there so all people who have this and or know some one who does my note to you is never lose hope always be by their side n just pray

sonam oberoi said...

hi...i lost my mother(sunita oberoi) abt 6yrs back...we had know idea wht SJS was until she was diagnosed with it which almost took d docs 48hrs to confirm...till then she was on iv steroids bu nothing helped...she too was being treated like a burnt patient..she tried very hard to be strong but after 14 days of pain n suffering she gave up...she had become deaf blind n her eyelids were stuck together..her skin had been stuck to d bed sheet because of d blisters...her mouth wud bleed n and slough..aft the 13th day she went into coma followed by a multi organ faliure n septicimia..my heartfelt condolence to all who lost der loved ones n best wishes to those who survieved it...god bless all if der is a god up der..

silver back said...

hello guys, i just started a community for sjs survivors .. it has helped me get in touch with so many people where i have gained and given moral support... peer support can be very valuable.. when another person who has been through the same can tell you it'll be alright.. :) please take a look..https://www.facebook.com/#!/pages/Stevens-Johnson-Syndrome-Survivors/147020638681264

guillramos said...

hi my aunt is suffering from SJS and we dont know what to do. currently she's in apublic hospital but the doctors there were advising us to transfer in a hospital with an allergiologist. we don't have enough money to that. im begging you to please help us in any way or another.maybe you know a foundation taht maybe of help. i love my aunt so much.here's my number 09065998165

Anonymous said...

A 11 year boy died in Sri Lanka on 2011-10-13 after suffering for a week in the hospital. He was caught to the condition after a drug taken for a skin rash.
This condition is not known by most of the hospitals.

Maria said...

My friend's son just was diagnosed with SJS. He's at Children's hospital in St. Louis. He just turned 4. I don't know all the details but I know that he recently was treated for strep with an abx probably. Also wondering if maybe he just had an MMR or chicken pox booster shot having just turned 4. They tell them he'll recover but that it will take awhile. Anything the parents can do for him? Other than being there of course? SOme of you who had this as kids, what did your parents do that helped? I'm so sad for my friend and her sweet little boy.

Uro said...

i had it when i was 2-3 .am 29 now. don't remember much and don't have any scars.
anyone know if we can get sick later because of sjs?

elaine said...

i had sjs when i was 11, i can remember some things, i think i had a bad flu and so had anti biotics but wasnt getting any better, so they sent me in to hospital, i know they told my mum and dad that i wouldn't last the night and i can remember how i was watching the doctor sitting on the edge of my bed injecting me from the ceiling of the room! i did survive and i am now 55 years old, i was left with a shadow on my lung so i sounded l as if i had a smokers cough from the age of 11.

prettymomkris said...

Hi!everyone! I am also a survivor of STEVEN JOHNSON SYNDROME.And i need people who experience and survived like me,of STEVEN JOHNSON SYNDROME.Because i need it for my THESIS.I am hoping that anyone who survived SJS will help me.THANKS AND GOD BLESS US ALL!

Harrys Mum said...

Hi all my Son has survived SJS and had it Nov 11, he is 9 years old. He had a reaction to a chest infection and started with a mouthful of ulcers and swollen lips which bled. He was diagnosed by the fourth doctor that we saw (thank god) and put on IV and hospitalised for a week. His eyes are fine, still being closely monitored, he has a few scars on his body and has been left a bit wheezy but has recently won three trophies for playing football and is doing extremely well at school even though he missed a lot of year 4. To the person who is writing a thesis I would be more than happy to help in any way. To those who are going through it at the moment me and my husband kept a bedside vigil 24/7 giving eye drops every hour, bathing eyes and mouth keeping our boy comfortable and praying, I really believe that our love kept him safe x if there is anything I can do to be a shoulder or to raise awareness please get in touch x

Anonymous said...

My poor little niece is 3 years old n was just rushed to the hospital the night befor last, as it started with a tiny scratch on the back of her neck with in the last 2 days has spred covering her face n most of her body with painful blisters and shedding of her skin!!! I'm very very worried about her as the hospital says there isn't much they can do for her?!? Keep her isolated n try not to let her scratch her self and they have her on Morphine for the pain.... This does not seem right to me??? If there is anyone out there that has any advise for me and my family it would be a blessing and greatly appreciated!!!! We are in Halifax, Nova Scotia Canada! Please to anyone with any helpful knowledge please email me at: ryansamson@hotmail.com

Anonymous said...

My son had SJS at age 16 and they kept trying to say it was an STD. He did not have a girlfriend and was so busy with sports and school. He almost died from lack of being able to eat or swallow. It was horrible. Seven teams of "experts" tried to solve his case, when finally an old lady doctor said what it was. He got better in a very short time after getting the correct medicine. He is still susceptible to getting it and he uses Oregano Oil as an antibiotic, not pills. My husband has a friend when he was growing up that had SJS and shortly after our son was better, another friend's son contracted it and they were able to diagnose quickly because of the information we had.

 
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