Stevens- Johnsons Syndrome and our new "normal"

This past week has had its ups and downs more than most weeks. 

Simi is recovering from her leg surgery and acting like a small child. She gets pampered quite frequently and loves having her blankets nearby at all times. 

Our big news this week is Shane. 

Sunday night, Shane took 2 Aleve for his headache. Within 2 hours, his lips had started swelling and he was starting to itch all over. 

Monday morning, he woke up and he was covered in hives. 

Tuesday, he went to the doctor and they treated it like an allergic reaction.

All day Wednesday, his lips were peeling, crusting over and peeling again. His mouth has blisters on the inside and it hurt him to swallow and talk. 

By Thursday morning, he was in so much pain, he called  the doctor and got an appointment for Friday morning. 

Finally Friday rolled around! After spending almost 2 hours at the doctor's office, his doctor believes that Shane has Stevens-Johnson Syndrome. 

• What is Stevens-Johnson Syndrome?
• According to the Mayo Clinic, "Stevens-Johnson syndrome is a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection. Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed".  

• What caused Shane's reaction?
•  We are assuming that the Aleve is what caused his reaction. The problem is SJ is not something that you can test for. If you give a person diagnosed with SJ the drug that causes it, the reaction could be so severe that they end up dying. Most patients with SJ require hospitalization in a burn unit or ICU. 

• Is it genetic?
• There is a gene called HLA-B12 that has a possible link to SJ. It means that you are more susceptible to having a reaction, not that you have it. 

• Is there a treatment?
• There is no known treatment. If Shane breaks out again, the doctors can only treat the symptoms. 

Needless to say, this is very frightening. Shane will have to wear a medical alert bracelet, keep a card in his wallet, and a key chain. Just keep us in your prayers!