SJS KIDS SUPPORT

SJS Kids Support

lighting the way to hope!

             Hello, my name is Oakley, in dec 2013 when I was 7 I had an allergic reaction to my epilepsy medicine. I had sjs/ tens and lost 100% of my skin all my finger and toenails and all my hair. I also lost part of my big toe. I spent 5 weeks on a ventilator in intensive care. Then a further 3 weeks in intensive care before I was moved to the rehabilitation unit where I learned to walk and eat again. I was determined to go home so I worked hard to get there. After 3 months I finally got to go home. I missed Christmas and several family celebrations but I am a survivor I am alive and my scars tell the story of the fight I had for my life. A battle I won!
Kai Kehm is 5 years old. He was 3 years old when he got SJS/TENs from taking Bactrim for an MRSA ear infection. On day 12 of the antibiotic he woke up with a rash. We took him to the pediatrician and were told it was an allergic reaction and given a prescription antihistamine. By that afternoon his eyes were swollen shut and the rash had spread all over his body and was raised and swollen. We took him to the ER at Texas Children's Hospital. Within an hour of being there the first blister showed up in his mouth and he was admitted. They admitted him to the cardiology floor because Kai was born with a congenital heart defect, which was fixed at 10 weeks old. Kai also has Down syndrome and is still nonverbal, so we had know way of know what hurt or how bad. Within 36 hours he was rushed to the OR and nasally intubated because his airway had swelled shut and then he was transferred to the PICU. He was placed on a ventilator and sedated and paralyzed. He was put in isolation and treated as a burn patient. His body was debrided every 2 days, under his eyelids every day. The cuff on his breathing tube had a hole in it and couldn't be inflated as his airway swelling decreased, allowing for tissue from his mouth and throat to slough off and go down into his right lung. He had no bowel sounds so he was switched to IV nutrition. Kai had many of his specialist come visit him. His cardiac surgeon, who we hadn't seen since his surgery 3 years prior, came to check on him and assured me this wouldn't damage his heart. His white count became so low that hematology oncology came in to test him for Leukemia. Thankfully he didn't have that. He started getting corneal abrasions and so Baylor brought in special lenses for his eyes made from amniotic material. They placed those in his eyes for 7 days. He was also given IVIG and put on IV Vancomycin. The DRs were concerned that the MRSA in his ear would cause him to become septic, so he had to be treated with antibiotics. After 10 days he was finally extubated, taken off the ventilator and allowed to wake up. Then he was moved to a step down unit called PCU. We spent 2 more weeks in there finishing recovery and weaning from pain medication. Kai lost 80% of his skin but fortunately only spent 1 month at Texas Children's before going home. The lenses reversed the corneal damage. He has no lung disease and no scarring except for a small amount under his left eyelid. He doesn't appear to have any lasting results from SJS/TENs and we are so very thankful.
Lacey Heskett had SJS when she was 3 years old and spent her 4th birthday in the hospital.  SJS effected Lacey in many ways. She was left with both eye and lung damage.
This is Mahayla Kanaugh. She is 5 years old and had SJS when she was 15 months old. She got it from taking Phenobarbital. She was in the hospital for about a week and as her mother I thought it was the worst thing ever but I soon found out, through website's like this one, that she could have been a lot worse. She is definitely a miracle from God and I am so thankful that she is doing well with out any major lasting effects from SJS. She is now in pre-school and  doing wonderfully.

My son tyrelle turner, is now 12 years old and we reside in Jackson, Tn. At age 10, tyrelle had a life threatening allergic reaction to medication he was prescribed for a sinus infection, bactrim. He began taking the sulfa med march 9, 2012 and about 5~7 days later he started to have symptons of a headache, fever, bodyaches. I took him back and forth to drs, clinics  hospital and they continued to misdiagnose him, saying it was because of the sinus infection, and to finish the bactrim, then it was strep, altho he was negative for the test, even saying he had scarlet fever and releasing him with a 104 fever. This went on from march 18~24, and on the 24th, when I took him back to the ER again that evening, I finally refused to leave without them telling me why my son could barely breathe, wouldnt eat, drink, or really talk, why he had blisters all over his mouth. They didnt know, so they sent him to Lebohneur by ambulance in Memphis, Tn and finally after doin a biopsy they informed me my son had sjs, but couldn't help him there. They ended up flying to Little Rock, Arkansas to their Childrens Hospital, which contained a burn unit that could possibly help tyrelle. By this time the sjs that only covered 30% of his body, now covered over 70% of his body (tens). When he reached the hospital, the dr informed me that if he didnt start getting better within 72 hours, he would probably not make it. After plenty crying alone there with my son, and plenty praying after they put him on life support, slowly he started to get better. He was put on a feeding tube along with the ventilator, and other machines, but on April 10, he was released with strict instruction since it had affected so much of his body, especially his face, neck, back, chest, and hands. He was not allowed to complete the remainder of the school year, and has to see an eye dr as well.  (To add insult to injury, my job at Apria Healthcare termniated me almost immediately after coming home from Arkansas with my son, even tho they werent paying me while i was off.) He went to see a dermatologist, whom informed us that his scars could be permanent since they had affected so much and were so deep. But i am proud to say today, that the dr was incorrect, and my baby's face has cleared up remarkably, his body still bears scars, but his face made him self confident. He is excelling in school, in all honors classes making all A's, 1 B in his elective class, he is also doing phenomenal on the athletic level. He was mvp and captain of his football team last year, and this year his 1st year playing for his middle school he scored 4 touchdowns his 1st game last Saturday. I am so proud of him. Thank u guys for supporting us. The Stevens Johnson Syndrome Foundation give us a chance to be heard

 

Sincerely with love,

Shenika Thaxter

Hi, my name is Stephanie Zundel and I'm 13 years old living in New Jersey. I got SJS/TENS two weeks before my third birthday. I got SJS from Children's Motrin. I lost 97 percent of my skin, all my hair, my nails, my voice, and my eyesight. I was in the hospital in the burn unit for two months. The doctors thought I was going to die because I had extreme third degree burns all over my skin and I was wrapped in gauze with many different tubes in me. I couldn't move or talk. It was a devastating time for my family, but a miracle happened and God helped me gain my strength and I survived. I have many scars and I'm still blind. My nails didn't grow back right because they look like I bite them, but I'm thankful that I survived.
This is Brendon Brown.  He had TENS in March of 2007, a few weeks after turning 3 years old.  He is 4 years old now and overall, is doing well

             My name is Jeri-Ann, I am currently 25 years old, I was in the hospital from October to November of 2011, and this is my story.. In the summer of 2011 I was put on an anti convulsion medication that I never took before, thinking the med was actually suppose to help when it only made things worse from there. My best friend was on the same medication for years prior so I thought for sure it would be ok for me. Almost every week after taking this I was in and out of different hospitals. I knew something was wrong with my body, I didn't feel right at all. I didn't think anything of these symptoms because I was always a sick child; I practically lived in the hospital. But this, this was different; almost every symptom I had prior was more severe than usual. I knew something wasn't right, so in and out of doctors/hospitals, always being sent home with different meds, by the time they caught this awful disease that was taking over my body, I was on 10 different medications, which by then increased the likelihood of so many other issues and side effects I could get. I had no one following my care when I was on all of these meds. Whenever I was seen with different symptoms, I kept getting different prognosis's; viral infection, sinus infection, the flu, and even my last visit to the ER they thought I was on something, and thought I was crazy because I kept slurring my speech, and because of my history they couldn't be bothered, they sent me home for the last time, then I developed a rash, my mom looked up my symptoms and the med I was on to see if there was any relation, and that's when we came across Stevens Johnson Syndrome. Immediately my mom called 911, because I couldn't breathe, everything hurt, and the rash just kept getting worse over time.

              I do not remember much about the transport and some days of my hospital stay are vague, because I was in a medically induced coma for 3 weeks. I remember waking up from all the horrific nightmares, pulling out tubes, kicking and hitting nurses and doctors. I was in the ICU burn unit for 3 weeks and the last week I got sent to a regular room, had a relapse and was back in again. Even after I was sent home it was too soon and I was back In there a week later. My first week was touch and go, they told my family I may not make it the first week because of how fast I went downhill. It was like all of a sudden as soon as the rash came everyday was worse and worse, no one expected this, one day I was fine and the next day I was on my death bed. Oh what a nightmare this was, but I pulled through, and they said it was a miracle of how serious I was, blisters covered just under 80% of my body. It started out as SJS, and overnight it turned into TENS Mostly because internally I suffered more, I had tubes sticking out of nearly every part of my body, and I'm so glad I was wrapped so much so I didn't see how I looked, but I still remember those horrific moments, which I now suffer from PTSD.. I did before SJS/TENS, but for a whole other reason. I was told I may have to go to rehab when I left, but I recovered so fast, they were surprised how good I looked, even now you couldn't tell I was sick, but little do they know I have to face some lifelong issues that I wasn't ready for.

              As of this year 2014 I currently have about 10 doctors I have to see all the time, but it has gone down over time. When I was first released from Brigham and Women's Hospital of Boston, I had nearly 29 doctors and specialists. I was in the doctors every other day, now it's about once a week. My tear ducts were scarred shut, so I do not produce tears and use eye drops every other minute, and special contacts called PROSE that I get from Boston Foundation for Sight, and I have to change my contacts at least 10 times, usually more on a daily basis. I only had 3 nails that grew back completely, but are still so fragile, and one that grew back all warped, my finger and toe nails will fall off and bleed at random, and I also have really bad joint and muscle problems, arthritis, asthma, and fainting spells. I am allergic to so many things now that I never was before, and I get sick so easily because my immune system was weakened drastically after SJS. I also cannot work for longer than 2 hours at a time, due to all of my internal issues, no one understands, I've been bullied because of my disability. But I have overcome the odds and I would not trade this life for anything because everything happens for a reason. I believe my reason was to help others facing some similar challenges and so much more, I love helping others and “I get inspired from seeing larger than life.” As I was told I would never be able to drive, go to school or live a normal life, but what is normal? This is my new normal and I have finally come to terms with it. Although it's harder than I could have ever imagined and some days are worse than others, what always keeps me going knows that it could be worse! I am thankful for the amount of love and support I had through my journey, some people don't even have this. Although I have lost so many friends because if my limitations and this horrific disease, I have gained so many more. I am so blessed to have been able to meet so many wonderful survivors and their families as well; it helps drastically to know that I am not alone.

This is Shane Angelo, he had SJS/TEN in August of 2003 when he was 21 months old from Phenobarbital & Phenytoin. He spent 2  1/2 weeks in the ICU and 9 weeks in the Burn Unit at the Hospital for Sick Children in Canada. He is a happy boy and doing great at school. He is our Hero, our Angel. We are very thankful, to have him in our lives.

Hello,
My name is Valerie and I am 9 years old, and in the 4th grade. I live in Michigan. I had SJS in January of 2008 when I was 8 years old. Valerie

Seth is a 15 year old boy that got SJS July of 2008 and spent 3 weeks in the hospital.  Seth is an amazing kid that has never complained through this whole ordeal.  He continues to enjoy most things he did before SJS; hunting, snow mobliling, and all lake sports.

 This is Matthew at age 5. This photo of Matthew was taken 1 week before he contracted SJS from either Motrin and/or Zithromax. The day after this photo he became ill with an ear infection and high fever. 4 days after he started the Zithromax he came down with symptoms of SJS. Thankfully the wonderful doctors at the Hunterdon Medical Center in Flemington NJ were familiar with SJS sent him immediately to the Children's Hospital at St. Peters University Hospital in New Brunswick, NJ.  Matthew is doing wonderfully now... Thank you for this wonderful website. Matthew is very happy to know that there are other children out there that he can relate too with his experience

Kolby lives in Pennsylvania and has experienced SJS three times at the age of 7, 8 and 10 years.  He is currently a very active 11 year old that enjoys all sports and hunting with his father. We are very blessed by God to have Kolby in our lives.  He is a true Angel on Earth!
Ian is a 10 year old boy who had TEN at age three from an antibiotic.  He is determined to "be happy" and his idea of heaven is to spend time with friends, just laughing and enjoying their company.  He loves amusement rides and water parks and is totally in love with his dog "George" - a female Bichon Shih Tzu cross.  If I had to say one thing about Ian, it is that he has a laugh that could light up the world!

This is Shane Quandt the year after he spent one month in the Nebraska Medical Center Burn Unit with TENS.  He was 3 years old and his TENS was caused from Children's Motrin.  He was very lucky and the only lasting side effect besides skin scarring is that his gums have receded and he will require skin grafting from his palate to his lower gums for more teeth support.  This was caused from the massive loss of mucosa in his mouth and
esophagus.  He is now in kindergarten and is a constant reminder of the most important miracle we have ever witnessed

Derek is a 17-year-old high school junior who got SJS in February 2005 as a result of a combination of ibuprofen and mycoplasma pneumoniae.  He spent one week in Children's Hospital of Pittsburgh.  Derek enjoys playing ice hockey, fly fishing, golfing, and hunting.  He has a promising future ahead of him as he begins making application to colleges in pursuit of obtaining his goal of working in a conservation/fisheries management career

I had just turned 6 years old in 1991 and I went to my doctor for strep throat, a couple of days later i had an allergic reaction to the Amoxicillin he had given me. My doctor misdiagnosed it as the measles and my mom wasn't allowed to be with me because she had never had the measles. My grandparents were the ones who finally decided i needed to be taken to the hospital and they immediately said it wasn't the measles, it was Stevens Johnson Syndrome, and if they had waited any longer to bring me to the hospital, i probably would not have made it. I was in the ICU burn unit for almost two weeks in a drug induced coma with 82% of my body covered in water blisters, my skin literally fell off when a blister would burst. I fortunately don't remember most of my hospital stay, but since then I've had numerous procedures to help improve my vision in my right eye. There was nothing the doctors could do for my left eye and I went blind about a year after my reaction. Today, almost 23 years later, I've graduated high school, received my Girl Scout Gold award, became a Certified nurse's assistant, I've been married for almost 5 years to my wonderful husband Matthew and we have a beautiful daughter,Elena, who is almost 2. I refuse to let anyone tell me I can't accomplish what I want to because of SJS taking my sight, and I hope that anyone reading this knows you can accomplish anything you set your mind to. Never let SJS bring you down!

This is a picture of Miranda Warr.  Miranda had SJS last August at the age of 4.  She had a reaction to antibiotics.  We are grateful she has had no long term effects

Jeremy was seven years old in 2004 when he got SJS after taking Bactrim for a staph infection. He spent three weeks in the Children’s Hospital of Austin. He has some tissue damage in his eyes, and learned how to put in his own contact lenses when he was only eight! This photo was taken the year after SJS when Jeremy served as a Miracle Child for the Children’s Miracle Network to help raise funds for children’s hospitals. Today Jeremy is in middle school and doing great. He enjoys tennis and computer games.

Miranda is a 12 year old who contracted SJS in November of 2004. She was diagnosed with mycoplasma pneumonia on 11/9/04 and perscribed Childrens Motrin and Zithromax. On 11/14/04, she was admitted to Children's Hospital of Pittsburgh for Stevens-Johnson Syndrome with ocular and oral involvment where she received a 5-day treatment of IVIG infusions. Since her discharge she has undergone surgery on her tear ducts to remove scar tissue build up. Though the surgery was not 100% effective, Miranda lives the normal life of a pre-teen and does not let it stop her.

Six year old Ian from Mexico spent 2 months in the intensive care unit in Galveston with SJS. Pictured here with his little brother 4 year old Andre enjoying a good time off the cost of Cancun!

Hi! My name is Caleb McCourry and I am 10 years old from Norman  Oklahoma. I had SJS in October of 2007. I got ill with what the doctor  thought was Mycoplasma Pneumonia and was put on Zithromax. I started to show signs of SJS after 5 days but was misdiagnosed by my doctor  fortunately my mom researched my symptoms and came up with SJS. My   parents took me to The University of Oklahoma Children's Hospital where they said it was indeed SJS. I was in the hospital for 17 days.  I am well now and have no side effects thank goodness. I like football, playing with my friends and riding my bike.

Hi I am Nicole chapman.  I was diagnosed with SJS/tens at the age of 6. September of 1993.   I spend 21 days in the Burn center. My skin was covered with pig skin to protect it.   I now have glass tear ducts; I have many other side effects to do the fact of SJS.  Including lots of Joint problems, The cause of my sjs is unknown.  I have had about 36 surgeries mainly eye surgeries, ear, 1 knee surgery.  I can’t thank the sjs foundation for what they have done for me.  When having a bad day Jean is always there to talk to.  Julie is a true inspiration.

Lily is 11 years old and had SJS in Sept 2005. She is doing fairly well.She has had 4 operations on her eyes, continues to have GI problems and her poor skin is fragile and dry. She is so funny and quick to laugh and brings joy to all she meets!
My name is Caylynn, I had SJS/TENS when I was 10 years old. I have had it 8 times since then and now I'm turning 16. It has effected me in many ways. For instance I was a lot less shy when I was 9 and 10 until I got it SJS. Then I was more shy and less confident after words.Everybody started noticing my scars and I was worried.I thought my life would never be the same. Really now that I look at it, it's not. I have dry eyes and double vision. But now I'm 15 and working. I am shouting out to whoever has had sjs cause I feel for them. I know what they went threw and are going threw.
Austin is a 14 year old from northeast Ohio. He had SJS in November, 2007 and February, 2009 (yes, with a full mouth of braces too!). The first time the doctors did not diagnosis him with SJS - but now the 2nd time, knowing what SJS is, he definitely had it in '07 too. This second time was much worse. Five months later we would have never thought things would be back to "normal" after 2 weeks in the hospital and a long recovery. Things will never be quite "normal" again for Austin or any SJS victim or family as we will always wonder if he'll ever get it again. The doctors "think" it was from a virus....although he had been taking ibuprofen for a week before his symptoms this time (don't remember last time) for a swollen knee that was a sports injury. Needless to say - no ibuprofen or sulfa based drugs for him ever again! He is another kid who never complained at all through his whole ordeal