The story of Rylie Whitten has recently made national headlines. Her doctors say she suffered one of the worst cases of toxic shock syndrome they had ever seen. For nearly two weeks Rylie was unconscious but she is currently off life support and giving doctors hope of recovery from this rare syndrome that affects only about 1 in 100,000 people.

Still, parents may want to uses Rylie’s story as a cautionary tale for their own daughter.

What is toxic shock syndrome?

Toxic shock syndrome (TSS) is a group of symptoms throughout the body. This illness can progress rapidly and lead to a failure of multiple body systems. Toxic shock syndrome can be fatal. It’s caused by two types of bacteria, Staphylococcus aureus (often called staph) and Streptococcus pyogenes (often called strep). These bacteria can produce toxins. In some people whose bodies can't fight these toxins, the immune system reacts.

What causes TSS?

Factors that can increase your risks of TSS include chickenpox, skin lesions such as burns and HIV infection.

But what’s mostly associated with the cause of TSS is tampon use. The earliest cases date back to the late 1970s and were caused by super-absorbent tampons. Research produced better, safer tampons and better habits, such as changing them more often, caused a significant decrease. Today, about half of all TSS cases are linked to menstruation.

Other causes include two types of birth control methods – the contraceptive sponge and the diaphragm.

What should your daughter do to decrease the risk of menstrual-associated TSS?

Your daughter should only use low absorbency tampons and change them often.

Risk of menstrual-associated TSS can be lowered with the following steps:

1. Do not use tampons continuously when menstruating.
2. Alternate using a tampon with a sanitary pad.
3. Switch to sanitary pads at night.
4. Do not use super absorbency tampons.
5. Change tampons frequently during the day (every 4-8 hours).
6. Store tampons in a clean, dry place.
7. Wash your hands with soap and water before and after using a tampon.
8. Use a lower absorbency tampon if you find the tampon is irritating or hard to remove.
9. Use tampons only during menstruation.
10. Seek medical care for infected wounds.
11. If you have had TSS, do not use tampons or place birth control devices in your vagina.

Resources:

• Toxic Shock Syndrome
• Toxic Shock Syndrome Information Sheet

*Photo from Spectrum Heath "Heath Beat"/ Courtesy of the Whitten family

It started with body aches that we thought was a result of riding one too many rollercoasters. I deteriorated quickly. After two trips to our local ER, I was admitted. That Wednesday, my physician had the grace to admit he didn’t know what was wrong and arranged for me to be airlifted by Teddy Bear Transport to Cook Children’s. I remember the intensity of my family and the staff as they tried to stabilize me to be airlifted. I remember three angels in blue jump suits, Cindy, Darren, and Gerald. I don’t remember much of the flight but will never forget being wheeled off the plane and seeing the pilots with hats over their hearts. As incoherent as I had been – it was at that moment I realized that I was really sick and might die.

I don’t remember much of what happened to me after I arrived at Cooks. I was taken to the ICU in a medically induced coma on a ventilator for the next 5 days. My family was told to prepare for the worst and it was during that time that I had what most people would call a near death experience. It’s almost impossible to describe the feeling of waking up and realizing you’ve literally missed days of your life. At some point, I had been given an arterial line and had a board on my wrist to keep it steady. I was still in a lot of pain and very confused. I was diagnosed with TSS caused by a strep infection.

I was able to move out of the ICU the following day with a long recovery ahead of me. I was released from the hospital on September 15^th – exactly two weeks after my symptoms began. Although I was excited to be home, I was far from back to normal. I was still in immense pain. Every lymph node in my body was swollen and one eventually had to be drained. I lost my hair, my skin, and my nails. My muscles deteriorated; I had to participate in physical therapy. I was not able to return to school for two months because my immune system had been wiped out.

Even though it’s been nearly 20 years, it is still difficult for me to talk about what happened. As terrible as the experience was, I am incredibly blessed. Non-menstrual TSS still has a high mortality rate. I have no doubt in my mind that had I not been transferred to Cook I would not have survived. I look at my scars and I am forever grateful for the compassion and knowledge of the many people that took care of me. They saved my life.

KrisDi Ingermann went to Cook Children’s in 2007 close to death from toxic shock. Once she arrived, an Emergency Room physician almost immediately diagnosed her. Over the next six days KrisDi was unconscious in the Cook Children’s pediatric Intensive Care Unit.

“I have never been so scared in my life,” said Theresa Ingermann, KrisDi’s mother. “She had doctors and nurses at her bedside 24/7 until she was out of the woods.”

As they watch the drama of Rylie play out on national television, the Ingermanns hope their story will help others understand not only the difficulty of recovery, but also the stigma attached with toxic shock.

KrisDi’s symptoms began almost immediately after she used a tampon for only the second time in her life. Later the Centers for Disease Control and Prevention took the new sports tampon brand she used and interviewed the family in hopes of preventing other users from suffering a similar fate.

KrisDi was embarrassed at the situation. She was even concerned because the CDC would report on her illness and that a record would be kept of what she had gone through as a child. More than eight years after she nearly died, KrisDi fights back tears remembering not only her near-death experience but what she dealt with from her peers who didn’t understand her condition.

“At the time, it really messed me up in high school,” KrisDi said. “The first thing people said after I got it was that I was dirty and that I didn’t take care of myself. There are always mean kids in school and they thought it was because I didn’t change my tampon. They didn’t know why I got it, but that was not the reason.”

Little did those kids know the true story. The family had gone to Lake Whitney near Waco, Texas. Theresa had gone to the grocery store. She wasn’t gone a half hour, but when she returned she found her daughter in horrible shape.

KrisDi’s skin was “beat red” and throwing up. They rushed her to a nearby small clinic. The medical team gave her oxygen but it did little to help. KrisDi had a defibrillator for a heart condition and the pacemaker was working against the medication she was given at the time.

After three hours, the medical team at the clinic called an ambulance to rush her to Cook Children’s Medical Center in Fort Worth. KrisDi remember saying she was going to die. Her mom says when her daughter opened her eyes they were a frightening blood-shot color, as if KrisDi was bleeding from them.

The next six days was a battle for KrisDi’s life.

“It kept getting worse and worse, for a while the medical team didn’t know if she would make it,” Theresa said. “Fortunately, KrisDi doesn’t remember any of it. But for me, it was the worst time in my life. I wish I could forget it. It’s hard to even think about it now.”

On the fifth day everything changed for the better. KrisDi opened her eyes and looked around. By the next day she was out of the ICU. She spent another week at Cook Children’s before getting discharged.

After the harsh reaction she received when she returned home, it was almost a year later before KrisDi told anyone that she had toxic shock because of the stigma involved with the condition. The family eventually moved to Kentucky to put that time behind them.

“KrisDi was always a very outgoing person but she just shut down after she got out of the hospital. She didn’t want to see anybody. She felt shamed because of it,” Theresa said. “She received counseling for help. But kids that age are going to talk. It wasn’t the truth the things they said about her. It was horrible. I don’t think people understand she had done everything right and we still almost lost her.”

Today, KrisDi is doing well and is the mom of a 7-month old daughter named Vera. KrisDi suffers from migraines and muscle aches, but she’s not sure if it’s related to toxic shock.

“I hope that more studies are done on toxic shock and I also hope that people take time to learn more about it,” KrisDi said. “I have good hygiene. I did as a young girl too. I had done my research when I had my first period and did everything I was supposed to do. I want people to know that it can happen and I want girls like Rylie to know that it’s not something she should feel guilty about or embarrassed by it. I was embarrassed for a long time because people thought I was dirty.

But I wasn’t dirty and I’m not embarrassed anymore.”