My Daughter Survived Toxic Shock Syndrome

My daughter survived Toxic Shock Syndrome and it has forever changed her and our family.

One Saturday in November, my daughter (we will call her A) babysat her favorite little girl, met friends at a party, drove home for curfew, and went to bed feeling fine. Sunday morning, she texted me from upstairs to let me know she wasn’t feeling well and thought she was getting the flu. The flu was going around school, so we all assumed that was what she had. Her symptoms started with body pain, lightheadedness, and sore throat. She stayed in her room Sunday and slept most of the day just as she would if she had the flu. By Monday she was running a fever, had some gastro symptoms, and her body aches had gotten worse. She was weak and feeling terrible but did come downstairs to lay on the sofa most of the day while I worked. A does not often admit that she is sick, and hates to miss school, practice, or a workout so I knew she was feeling terrible to be home and admitting she was sick. I tried to convince her to go to the doctor Monday morning, but she assured me it was the flu and she needed sleep. After all, there is not much that can be done for the flu, so we just tried to keep her hydrated and tried to get her to eat something.

Tuesday morning, she woke up with a fever of 103, a rash on her arms and legs, a sore throat, and severe muscle pain. I knew as soon as I saw the rash that we had to get her to the hospital. My husband and I had to physically carry her down the steps and into the car. When we arrived at Children’s, I knew there was no way she was walking into the hospital. I ran in to get a wheelchair and helped her in, the sweetest maintenance man helped me get her inside, while I parked the car. We quickly went to triage and the nurse disappeared and came back with a doctor that pushed A to a room.

He asked on the way to the room if she was on her period and I immediately knew what he was thinking.

A told us that it had ended on Saturday. She changed her tampon right before she left for the party and removed it Saturday night when she got home 3 hours later. They hooked A up to the monitors, she was tachycardic with a heart rate of 163 and her blood pressure was 85/48. The room was swarming with doctors and nurses. They quickly started an IV, took blood, and pushed fluids to get her BP up. They ran a viral panel, flu swab, strep test, and urine culture, and put a rush on it all. They also did a chest x-ray which he said showed fluid on her lungs, and an ultrasound of her heart which thank God looked good. My husband rushed to the hospital just in time for them to tell us that she definitely had an infection of some sort, was septic, and it was affecting her liver and kidneys. They started her on 3 different strong antibiotics to be sure to cover whatever infection she may have. By the 6th bag of fluids, her heart rate had come down and she started to feel and look a little better. Her blood pressure was still low (88/44), so they started her on an epinephrine drip and transferred us to the PICU.

A spent the next 3 days in the PICU at Children’s getting the best care. She was in a lot of pain, mostly in her neck and throat, and had trouble eating, but she was improving. Her fever would spike at night resulting in a higher heart rate and lower BP, but she remained stable. Laying in the pullout chair at night, clutching my Father Seelos relic, staring at her monitors, and listening to the helicopters landing with more sick children was one of the hardest things I have ever had to do. She was in pain and feeling bad, but thankfully had no idea how sick she really was. At this point, her official diagnosis was a UTI with acute kidney injury and septic shock. She was on antibiotics so strong that they had to run blood tests between each dose to be sure she could handle another dose. On the morning of the third day, they finally had the culture results back and the results were Staphylococcus Aureus which again brought the thoughts back to Toxic Shock Syndrome. The hesitation to fully diagnose TSS was the fact that A did not leave a tampon in for 8+ hours and she also had not had one in since Saturday and was still so sick on Tuesday when we arrived. They were also not convinced it was a UTI, due to how she had no symptoms of a UTI and presented with such a low BP and high HR.

We were released to the floor for a few hours and were able to go home after they were sure her antibiotics could be taken orally. A could not wait to get home, and her siblings could not wait to see her. It had been hard for us to be away and for them to not be able to visit to see if she was ok. The PICU has a 2-person per day limit, so the only people A was able to see while in the PICU were me and her dad. Thankfully we have a wonderful family that does not miss a beat when they are needed.

We followed up with our amazing pediatrician one week after being released from the hospital. She was strongly leaning toward TSS given how the events unfolded. During the second week post-hospital stay, A started to peel on her hands and feet and lose a lot of hair. This was the symptom that confirmed her diagnosis as that is a classic sign of TSS.

There are not many resources for TSS survivors, as many people do not make it through.

A is so very lucky that we got to the hospital when we did, and the Children’s ER team worked so quickly to get her stabilized and on antibiotics. I cannot even think about what would have happened if A had put a new tampon in before going to bed Saturday night. Her liver and kidneys have all recovered. She was doing pretty well all things considered until we got her official diagnosis and decided to Google what it meant. It was that night, that she realized how sick she was, and how long her road to full recovery would be. A struggled (and still does) to take some downtime, both physically and mentally, and to ask for help. After the diagnosis, she started having anxiety attacks for the first time. We have all realized how fragile life is, not to sweat the small stuff, we have unfortunately lost some unsupportive friends, but above all, we thank God every day that A is here and healthy.

We certainly never thought Toxic Shock Syndrome could happen to our child and want to be sure we can inform as many parents and young girls as possible that it can happen to healthy, responsible teens. TSS is rare and happens in around 1 in 100,000 menstruating women. A has a 30% chance of recurrence, so she will have to take every possible precaution for the rest of her life. We have some amazing doctors in our corner helping to navigate this new normal. A will go on to have a wonderful and full life thanks to CHNOLA saving her. We are forever grateful to our support system and all of the doctors, nurses, and staff for getting us through the worst time in our lives.

About the Author

Amanda lives in Lakeview with her husband, Brian, and three children, Avery (17), Jackson (12), and Quinn (9). She is a Real Estate Agent and Travel Agent that truly loves what she does. When she is not working or cheering on her kids at volleyball, baseball, or dancing, you can find her binge-watching Netflix, spending time with her family, or sitting in a carpool line with a cup of iced coffee and her laptop.