"And here is the kicker - she might never have needed the penicillin that caused SJS to begin with."
"Back in March, Maddie complained of a sore throat so I took her to our family doctor. She did the usual checks - ear, nose and throat," says Tara, who is an emergency medical technician. About two days after she finished the penicillin, Maddie developed a rash so Tara took her back to the doctor. "She had been out fishing with her dad the day before and the doctor thought she had sun poisoning so she prescribed Prednisone. The next day the rash was more prominent and she had a fever so I gave her Motrin and put her to bed."I got up the next morning to go to work and Maddie called me from her bedroom, saying she had a sore in her mouth. I turned on the light and she was covered in blisters! I scooped her up, raced her into ER where I work and they told me she had a reaction to sunscreen. They gave her two Tylenols with codeine and told me to take her to a dermatologist. Luckily, the dermatologists were next door so I called from the parking lot. We went directly to their office and I went through the whole story again, about what Maddie had gone through and what she had taken.
They did a skin biopsy and the next thing I knew they were calling an ambulance to transport her to another hospital about 15 miles away. She got worse. I followed the ambulance in my car, hysterical but trying to hold it together - I didn't want Maddie to realize how sick she was.
We got to ER, they did some blood work and gave her Benadryl to relieve the itching and the next thing I know we were getting transferred to All Children's Hospital in Tampa - about 50 miles north. This took about eight hours. By now they had already surmised she had SJS. We got to All Children's around 7pm and they had teams of doctors in and out of her room. She was in isolation because they weren't exactly sure what it was.
They ended up giving her an IVIG - a blood product through a drip, slowly infused over a 12 hour period. At this point all the blisters were merging into one huge blister. Maddie was very scared but she was also out of it due to the Dilaudid - a heavy duty painkiller. Thank God for that. She also had a few febrile seizures that night, due to her fever. The next morning she was transferred to the burn center at Tampa General, where we stayed for 21 days.
Madison almost died that weekend. Every three days they had to debried her skin - they literally scraped her skin entirely off her body. Then they put on this stuff called acticoat - pure silver sheets with antibiotics in it. Luckily she was unconscious through these procedures, but one time she actually stopped breathing and needed CPR: I was in the room the entire time they did this - I lived in the hospital, sleeping in a chair next to her bed.
As if this wasn't enough, she contracted pneumonia and her left lung collapsed. Maddie had more IVIG treatments with other drugs and she was doing physical therapy every day - they didn't want her skin to get taut so she had to stretch it constantly.
Then after 21 days they released us - it was April 11, 2006. We now have an intense follow-up with a bunch of specialists. She also has arthritis and lots of tummy problems. Maddie wears a burn suit all the time. (A burn suit is pressurized to minimize scarring and consists of a tight pair of pants, long sleeved jacket and special gloves - we have different colors.) She sees a neurologist for chronic migraine. And she sees an eye specialist - they have to rebuild tear ducts in both her eyes.
The doctors finally traced this all back to the penicillin. But here's the kicker: her family doctor never did a strep test to verify that she had strep throat. So she might not have ever needed to take the penicillin to begin with.
When I found out that penicillin caused SJS, I ran a gamut of emotions. I am angry that doctors so readily prescribe antibiotics. My family doctor called when she found out that Maddie was in hospital - Tampa General had requested her medical records. I was very polite to her but it was difficult.
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Maddie is doing OK and we are taking it day by day. She is seeing a counselor at school and she has a lot of support from family and friends. She hates going to the doctor and is so tired of doing all this. Maddie doesn't talk about her illness (except with her counselor), not even to me. From what I understand, a lot of people have post-traumatic stress syndrome so I figure when Maddie is ready, she will talk to me.