We are on Day Eight of Kyle’s hospital stay. So much to tell. So much to say.
What is Stevens Johnson Syndrome?
Kyle had a rare form of this disease. It attacked his internal organs, the inside of his mouth, nose, throat, eyes, eyeballs, lungs. He required a feeding tube. They want to do a PICC line instead, but strong Kyle refused. Because he did not have the usual outside sloughing of skin, the Stevens-Johnson Syndrome was really hard to diagnose. Because they assumed he was sick from Mycoplasma pneumonia he currently had. The hospital continued to give Kyle Toradol for the pain. Eventually, they surmised that Ibuprofen (Toradol is in the same NSAID family as Ibuprofen) was the most likely cause of Kyle’s SJS. Consequently, Kyle had two cases of Stevens Johnson Syndrome.
PS. Kyle also burned from the inside out. That being said, heis so fortunate. It could have been so much worse.
16 thoughts on “Stevens-Johnson Syndrome”
Beth, I’m so terribly sorry for Kyle. I hope and pray that he will get well, that he will pull through this. You are all in my thoughts during this time.
Beth and Dave,
Please send our hello for our family. I am sure your days are like a yo yo and I so empathize with you. I cannot imagine what you all are going through. We are sending our thoughts and a big hug to Kyle. Jessica & Jaki ask all the time how Kyle is doing. They are very concerned and so is everyone. We send our prayers and positive energy in hopes of a perfect healing and outcome. We hope we can see you all soon and Stevens-Johnson syndrome will be gone from you lives.
The Perry’s John, Julie, Jaki, Jessica & Jillian
Oh my goodness. Prayers to you, Kyle and your family from Delaware. ((hugs))
I meant prayers from me in Delaware! 🙂
Much love to you all. I’m thinking of Kyle and you all during this scary time.
Kyle, I love you. I am so sad that you have to go through this. I would trade places with you if I could. Instead I will keep you in my prayers and keep sending you hugs and best wishes. Love Aunt Brenda
Oh, honey, I am praying for you and your family and especially for Kyle. I can’t imagine how much stress you are under! I wish I was closer so I could do more than comment on your website.
Hang in there… am sending my prayers for a rapid recovery.
Beth and family, we’re so sorry to hear about Kyle and want you to know that we are sending MANY prayers your way. We wish you the best of care in that hospital and hope you are home soon and safe.
Julie, Dwight, Amy and Dan
wow. So very scary. Hang in there mom. I had erythema nodosum 2 years ago — another bizarre idiopathic skin thing, hugely painful but luckily not life threatening. The only thing good about it (aside from being non-lifethreatening) was that it sounded like a Harry Potter spell. It just makes me weep to hear what Kyle is going through! But I get anxious when you don’t post on facebook (and it is, afterall, all about me!). We love and miss you guys
Sending love and well wishes your way. xx
I’m still reading and hoping that Kyle is doing all right. I know you don’t know me, but I’m thinking of you and hoping for the best.
I will be sending lots of prayers your way. My cousin experienced SJS as an infant and it was a life changing experience for our entire family.
I recommend contacting the Stevens-Johnson Syndrome Foundation for more information (www.sjsupport.org or email@example.com) They have support groups around the country and can direct you to the best resources for your son.
Thank you! Until experiencing this we had no idea what SJS even was let alone the hell it can cause to one’s body & soul. Life changing indeed! This is has been such a rough road and I am so grateful for people like you who are out there and who get it. Thank you!
Beth, Sadly there isn’t enough public knowledge about severe adverse reactions like SJS. Where the doctors able to confirm what caused Kyle’s reaction? Thank you for posting about your experience, educating people about SJS is so important.
Just checking in to see how Kyle is doing!? You have been on my mind lately, even though I am a stranger who reads your blog. Hugs and Prayers to you!