Part 2: Stevens-Johnson Syndrome, the Beginning

Beth & Kyle October 5, 2010

Simultaneously numb and completely in shock. That is how I have been and continue to be. Slowly I am coming back. We are all coming back. On February 6, 2011 I wrote the following:

Seeing Kyle’s fingernails and toenails peel off layer by layer until they reach the underlying skin from the nail bed up is what knocked some life back into me. The realization that something so seemingly minor, something we did not even notice until today, eight weeks after Kyle was first admitted to the hospital, woke me up. The weight is heavy. His fingernails look so gross and so painful. When I first looked at them I thought they were bloody because he had been picking the scabs out of his damaged nose. I was wrong. These ten fingernails and ten toenails were destroyed and slipped by unnoticed, unnoticed until now.

Before this all happened, if I were simply dealing with Kyle’s freakishly peeling fingernails, I would have completely lost my mind. Now peeling in such a horrific way, I didn’t even notice.

I wonder how long? You can tell they have been peeling for some time. Every single day I care for Kyle. Every single day I look in his mouth, examine his eyes, touch his puffy face and ask him how he is doing. Every single day I give him a litany of medication, medication that are administered around the clock, during the night, during the day, when I want to sleep, when Dave wants to sleep, we can’t. We are making sure our boy is ok. These bloodied and peeling fingernails woke me up, yet right now they are so insignificant. Somehow looking at these bloodied nails, a switch flipped. I can no longer ignore my emotions. I can no longer deny my broken heart. I can no longer say,

“It could have been worse.” It just keeps on coming.

The physical, emotional and psychological pain I have watched Kyle endure this past year as a result of Stevens-Johnson Syndrome is pain I could not have imagined. The utter despair Dave and I felt as we watched all the doctors try to figure out what was going on was so frustrating that initially I quietly unplugged my emotions. I had to. I had to get us through each day. I had to be there for my family. Kyle was breaking right before our eyes and we were all completely terrified. Kyle’s agony kept me silent. I kept my tears quiet. I kept my despair out of his hospital room. When others broke down, I asked them to stop.

“You are scaring him. And he does not need to be scared.”

The week before I took Kyle into the pediatrician he was home with a cold.

Kyle October 2010

On Tuesday, October 19, 2010, Kyle came home from school and said he was not feeling well. He sat on the couch and almost immediately fell asleep. Eli’s Parent Teacher Conference was at 4:00. Dave came home from work to attend the conference too. The three of us left while Kyle remained asleep on the couch. When we returned an hour later, Kyle was still asleep. Kyle never takes naps. He felt warm and sounded like he was getting Croup. Because he has a long history with Croup and the Croup getting really bad really fast, I decided I should take him into a doctor. Usually I would take him to his regular Salt Lake City Pediatrician, but because it was almost 6PM, the SLC Pediatrician’s office was closed and I did not want to end up in the ER. Kyle did not need to suffer. I called the local Pediatrician. Even though he was a new patient, she was happy to see Kyle.

By the time we arrived at the doctor’s office, Kyle was much worse. His fever was 102, he could not catch his breath, he was so pale and was totally freaked out. His throat hurt. His voice was hoarse and he sounded like a very sad baby seal.

The doctor thought he had Croup too. She tried to give Kyle a breathing treatment, which after a few seconds he refused. Then she gave him Oral Steroids and 600 MG of Ibuprofen. She prescribed two different types of inhalers and sent us on our way. I took him home. Then Dave drove over to the Pharmacy to fill Kyle’s prescriptions. Once Dave was home, we gave Kyle his medicine and put him to bed. During the night we closely monitored him. Kyle did our usual Croup-at-home remedy, which consisted of taking a long hot shower and then standing outside in the cold. Kyle still felt lousy the next morning and stayed home from school. By the afternoon he was feeling much better. By Friday, when my mom was with him, he seemed even better, yet his intense cough lingered.

By Sunday Night, October 24, Kyle began complaining about how his eyes felt like they had sandpaper in them. Then after his shower the next morning he complained about how his eyes had been glued together. Because he had already washed them outI did see his glue-y eyes. My motherly logic dictated that he was probably getting Pink Eye. Again, because I had not seen Kyle’s eyes glued shut, I wasn’t quite sure and even considered allergies. Sure, his eyes were red, but I thought he would be fine. Additionally, Kyle hates missing school. Because he had already been sick so, instead of keeping him home, I washed out his eyes and sent him on his way.

That same day, Eli was gone on a play-date.  At 3:05 PM I arrived at after-school-pick-up to get Kyle. The very first words out of his mouth, and while he was fervently pointing at his eyes, were,

“Mom, my eyes really hurt! They sting! I cannot stand it! They burn!”

I felt guilty for sending him to school and could tell things were much worse. I immediately asked if he wanted to go to the doctor half expecting him to say no. Emphatically he answered,


Because we had seen the Park City Pediatricians for Kyle’s initial Croup diagnosis, I called them again and scheduled another appointment. When we arrived, the office staff said the doctor was forty minutes behind. Because we live so close, I told them we would go home and then come back. In those short forty minutes and on our way back to the Doctor’s office, Kyle suddenly freaked out and blurted,

“Mom, I think I burnt my tongue from my hot cocoa! I can hardly open my mouth.”

Because we were going back to the doctor I asked if I could have the doctor look at his tongue too. “Yes! Yes! Please! It hurts. I don’t think I can open my mouth.”

By the time we arrived back to our appointment, Kyle could barely handle the eye pain. Oozy green stuff was dripping continuously from his eyes and down his face. He looked like he had pink eye on steroids. His face and lips were beginning to swell. The doctor took his temperature and it was normal. She said she thought he was suffering from a really bad sinus infection, a sinus infection that had moved from his eyes to his tear ducts. Huh? Honestly, even then, I did not think she really had any idea what was going on. She took a big guess and threw some antibiotics at the situation. I am told that usually big guesses work. Then she looked at his tongue and said it was not ripped. What she did see were  three big sores underneath Kyle’s tongue. She attributed them to the sinus infection. She prescribed 2,000 MG of Augmentin twice daily and we were on our way.


Kyle stayed home the next day. However, because my neighbor had planned a wonderful pumpkin carving party and because Kyle seemed better after resting all day, we let him go. Kyle, Eli and I went to the neighbors while Dave, who was also getting sick and who was leaving early the next morning for a business trip, slept. As the night progressed Kyle’s eyes and face became even more swollen. His lips looked as if a bad Plastic Surgeon over-injected him with Collagen. The other mothers, who I do not know well, noticed Kyle’s face, talked amongst themselves, worked each other into a frenzy and then mentioned things like Cellulitis, the dangers of terrible eye infections and of course, death. I was completely spooked! The women continued to insist that I rush Kyle to the ER. Regardless of what was really going on, somewhere deep inside of me I had a feeling that something very serious was wrong. I just did not know what.

Kyle’s Pumpkin October 2011

My neighbor graciously offered to keep Eli and because I knew Dave was not feeling well and also leaving for a business trip the next morning, I accepted. I took Kyle home. Instead of racing to the Emergency Room, I paged the pediatrician and then called my friend, who is also my doctor. After talking to my them, after weighing the history of the situation and listening to how Kyle’s cough sounded, they both encouraged me to take him to the Emergency Room at Primary Children’s Medical Center. The Pediatrician told me to prepare and pace myself in case they keep Kyle over night. She thought they would put him in the Quick Treatment Care Facility and give him IV Antibiotics to push the infection out of his system. I packed a bag for Kyle and gathered his favorite Blanky Car (Blanket) and Bully (stuffed animal). We were on our way driving down Parley’s Canyon in the very first big snowstorm of the season.


Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome I shake my Fists at You!

19 thoughts on “Part 2: Stevens-Johnson Syndrome, the Beginning

  1. I can remember seeing the pictures you’d posted and praying so much for you guys. Your poor son…I still say a prayer every so often, after reading the effects and lingering problems associated with SJS.

  2. Hey Lula, I know you know where I am coming from. Thank you for your love and prayers. They have been felt. You are in my thoughts too!

  3. Oh, Beth. Reading this now, after a year, I am so very sad. From your last post on the topic, you really are the best advocate for your kid.

  4. Damn. I am at a loss for words over this terrible, horrific syndrome. I do not think that I would have the strength to go through what you went through, Beth. Seeing my 11-yr-old son suffering like that would break my heart, as I’m sure it did yours.
    I guess it’s true what they say–what doesn’t kill you makes you stronger. Kyle is certainly a strong, stoic kid. Wow.

  5. Thank you, Dominique! You reading this means a lot to me. Advocating is our job and you have done a great job advocating for your kids!

  6. Beth,

    I’ve been reading your blog for the last hour. Thank you for sharing the details. I’m SO sorry for the ordeal you have faced all year. I’m especially sorry to hear that he continues to be sick! I just assumed things were getting better…. Please let us help! Preston is available to entertain Kyle and I’m here to support you in anyway!

  7. I came across this site while trying to google SJS on a recent episode of House and I’m so sorry to hear about your son — I had Stevens-Johnson in January 2009 and again that summer and it’s not a fun experience, to say the least. I was 23 and it was terrible and scary and I can’t imagine trying to cope with the pain and physical changes as a younger person. My thoughts are with your family as you are all recovering. If you have any questions for someone who has fully recovered/been through SJS you are welcome to email me, I know it’s rare and there isn’t a huge community of people to talk to.

  8. Erica, Thank you for your kinds words. I am so sorry you also had SJS. It is such a horrible thing to deal with. I am sure I will be emailing you. I also agree that there needs to be more information out there. We have felt very alone. That being said, we are grateful for people like you who take the time to reach out. All the best and stay healthy!

  9. I have stevens johnson syndrome can you contact me asap! 8017084637. Ive had this for years. Almost died many times. Also having a rough episode now, positive it is sjs. I have questions and also maybe you can give me answers from what you have learned.

  10. Reading your story was almost a complete mirror of what occurred to my daughter. She too has had several battles with SJS. Starting in 2008 when she was in 1st grade. She also (after being diagnosed by our pcp with a minor virus) was eventually rushed to ER with bulging Eyes and crusted lips. After hours of debate by doctors, she was diagnosed by the chief of Dermatology at the Children’s Hospital of Philadelphia with strep throat pneumonia and stevens-johnson syndrome. Before that,they were so puzzled that one doctor attributed her symptoms to our vegetarian diet….I did not allow her to continue consulting on Sarah’s case. looking at pictures of your son was like time travel for me. After a two month hospitalization with severe damage to her skin, mouth throat, and eyes I was told that it could not happen again but she stayed sick and tired on and off until her second major hospitalization December 2010. We too are continuing to pick up the pieces of our lives. Afraid of sending her back to school with a weak immune system I schooled Sarah myself. This year will mark her first time back in school with friends since her ordeal. I trust your son is doing much better and that he never has to suffer another episode.

  11. Neah,

    Hey there. I am sorry it has taken me a bit to respond. As much as I feel like the information needs to get out there and as much as I do not mind talking about Kyle’s experience, I still find it a very tender subject. Hearing about your daughter breaks my heart. I am so sorry she has gone through so mcuh. As a parent, I am so sorry you have gone through this too. Thank you for taking the time to share your story with me.

    Ah, the bulging eyes and crusted lips, no one gets it unless they have seen it or experienced it. It is so weird, you know what I mean? I am glad it only took hours for them to figure it out. Kyle was also diagnosed with Micpplasma Pneumonia (one of the known triggers as you know) when he first went in too. It was interesting and crazy to see all the conclusions the doctors came up to. One of the doctors likened what was going on with Kyle to an episode of, “House.” After hearing this, the doctor’s conclusions made me a little nervous.

    Your words bring tears to my eyes. I am grateful and sad. I am grateful you understand and am so absolutely sorry (again) that you all have had to deal with this. Your Sarah must be brave and very strong. I hope and cross my fingers that school will go well. The weakened immune system has been a tough one for us. School is a new petri dish every year and Kyle often gets very sick until his body gets used to life in the student population. Please feel free to contact me anytime. I am thinking of you and know I don’t know you personally, but feel like I can get your pain. All the best! <3 Beth

  12. My son Jacob who was a freshman in HS at the time came down with a sore throat, a cough and loss of energy. I took him to the dr. They gave him an antibiotic for a sore throat. 4 days later he was getting worse, I took him back in. His chest was hurting. Walking pneumonia and bronchitis. They put him on the Z pack. That next morning, he could hardly move or talk. I called the dr. They said take him to children’s Scottish rite hospital. We got there. They said he was dehydrated, Gave him fluids. Let us go home. By the time we got home, he could not walk in the door. I was losing my son. I went back to the hospital. Free several hours they admitted him to a regular room. After several hours in the room, I went to the nurse and said he can hardly breathe can you please check his oxygen. They took him to ICU. As they were wheeling him into ICU, an infectious disease doctor was walking by. He told them to stop and looked in my sons mouth (which was black with looked like burnt skin) and said he had SJS. Never heard of it. I am so thankful that God had him there at that time. This is a very short version because we went through that one phase in 3 weeks of not knowing why he was sick. I truly believe that the z pack started him in this sirection because it happened immediatley afyer he took it. The doctors tell me no. An allergist told me to write ot on his allergies. He was in the hospital for three weeks. He has been fine since then. Now he is a senior. Exactly three years to the month, he is coming done with some of the same symptoms. Matter of fact, I was told today he has a “virus”. I stressed to them about his past. I will keep a very close eye on this now that I know what it is. Even if I have to be in the ER and not leave.

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