On December 26th, 2018, while at my parent's home for Christmas I noticed that our daughter's chapped lips and rash from the day before had gotten worse quite rapidly even though we had been applying ointment to both a day/night previously. Her lips we're cracking in the corners and down the middle. Her upper mouth had become red and swollen as well as around the bottom. Creating a ring of reddness around the entire mouth. My father, her grandfather, took her outside to play with her new bike and suggested we take her temperature after she refused to play, felt warm, and wanted to be carried around instead of getting down to play. We took her temperature, it was 102.6. she was tired and wanted to nap after giving her Tylenol. Before we left to travel home she threw up twice, took a second dose of fever reducer and went back to sleep. I called her pediatrician's office to let them know she'd be coming in for a sick appointment in the morning. We got an appointment with their PA (who is great). She napped the whole trip home. When we got home she immediately went to sleep and slept all night. The next morning I checked her temperature, 102.4, gave her medication and sent her with her father to her appointment. I stayed home with our infant son and waited for an update. At the pediatrician's office our PA noted the temp and rash. She tested for strep as the rash on her groin was now bright red, bumpy and she had some rash on her cheeks under her eyes. The test came back negative and we were sent home with the diagnoses of a viral infections and steriod cream for her rash. We were told to apply aquaphor to her mouth, lips and under her eyes to help with the peeling and inflammation. At the time I felt like this was something more than a viral infections but was leaning towards Scarlett fever because of her rash. The fever presisted through Friday. The rash was peeling and looking less angry but was still very present and her lack of wanting to play concerned me. I called the pediatrician's office and was told viral fevers can come and go for up to five days (possibly even a full week), to let the meds control her temperature and if she still had a temperature on Monday to bring her in for re-evaluation. Monday came, and back to the pediatrician office we went. They tested for strep again, believing it had been performed maybe too early and thought she could have Scarlett fever. Negative results. Rash looked a bit better, so did lips but we were medicating both several times daily. On Wednesday evening (a full eight days of temperatures on and off, hovering between 100.-3-100.7 with meds, spiking to 102 or higher if we missed a time window for more meds) she took a turn for the worst. Her mood was beyond cranky. Everything hurt her feelings and everything she did made her tired or caused pain. "Mommy my legs hurt, mommy my head hurts, mommy my neck hurts" etc. At six thirty pm she walked into the kitchen asked her father to hold her and started vomiting everywhere. I noticed then that her eyes looked bloodshot. She'd been sleeping on and off all day. Barely playing and wanting to stay on the couch. I called our after hours number for our pediatrician and left a message with the oncall nurse. Our daughter, exhausted, fell asleep in our bed. When she threw up in her sleep without waking up fully, I went into panic mode. Luckily her pediatrician personally called me back and said that she wanted us to monitor her closely through-out the night. If she became unresponsive, her temperature rose above 102.5 or she complained of neck pain to take her to the ER immediately. She wanted us to come in so that she could perform an additional strep test, as well as flu, and check for sinus or ear infections before sending us to the OU Children's Hopsital for something called Kawasaki's Disease. Our daughter slept through the night, her temperature remianed between 100.5-101 and she vomited through the night. She complained of leg and foot pain. I noticed her soles were a little puffy and carried her back and forth from the bed, toilet and bath tub. She slept soundly but was responsive and didn't throw up on herself again like the first time, thank God. The next morning we drove to the doctor's office with the hope that they missed strep and a round of antibiotics would be the only treatment she truly needed. I had looked up Kawasaki's Disease her on this website and in my heart was pretty sure that was what our daughter had been battling for going on nine days now. I was afraid to be dismissed but also scared for my daughter. I felt guilty for not having pushed for more tests or asked more questions at the beginning of this illness. At the pediatrician's office, they ran some rapid tests for flu and strep. They checked her throat, tonsils, nose and ears. At this time we all noticed that her tongue was red and looked like sandpaper. Our doctor verifies that the rapid tests were negative and asked us to go home, get all our insurance information, to pack overnight bags and head over to the Children's Hospital to check in through the ER. She was calling a physician there to let them know she believed this was classic Kawasaki's Disease, we were on day eight or nine and she wanted us admitted. On our way to the hospital she called us to tell us that we needed to check in through the ER but that she had left word and we should be directly admitted. We were not. As we came into the ER my daughter got sick and threw up all over me and herself. The admitting nurse quickly gave us a puke bucket and she threw up again in front of the ER doctor who looked at her rashes, they had mostly begun going away with the exception of her groin and around her mouth and eyes. He looked at her feet, hands and tongue. He ordered a nasal swab and some labwork. After four hours a different doctor came back to tell us she had tested positive for the common cold. She seemed to be releasing us, my daughter was sleeping and had received a dose of Tylenol upon arriving even though we'd given her Ibprofen only five hours before. She said that she knew our pediatrician had mentioned Kawasaki's Disease but that the disease had distinguishing markers; cracked lips (check), rash on body (check), temperatures for longer than five days (check), peeling toes, strawberry tongue (check). I looked at her in disbelief and said, "my daughter has all but one of those things plus pain in her legs and is throwing up!" I frantically checked her feet and there between her toes, peeling skin, in largish chunks. I pointed at every symptom on her body and then sat down defeated. The doctor looked her over once more and then asked me how long her fever had presisted. She quickly walked away from us, I didn't see her again. About ten minutes later a man who introduced himself as the infectious pediatrician told us matter of fact you that our daughter's rash didn't meet Kawasaki criteria but she had enough symptoms and her blood work was elevated enough that she was being admitted as "atypical" Kawasaki's. At this point I didn't care; Kawasaki's, atypical Kawasaki's, cold, Scarlett fever... I was just happy someone was going to take a closer look at my sick child today. We'd already been there six hours. It took two hours to be admitted into our room and another few minutes to be examined by a team of doctors. The attending doctor spoke with us briefly; letting us know that they were going to work to bring her temperature down and observe her overnight and then repeat her labs in the morning. Her white blood cell count was on the high end of normal (almost over) and her liver enzymes we're elevated. Her liver felt inflamed during physical examination and they could physically see four out of five characteristics of possible Kawasaki's Disease. They needed to rule out everything else and re-examination in the morning. The next morning came. Our daughter was doing much better with fluids but was still running a low grade temperature medicated and hydrated. At this point another physician examined Brielle and noticed that she had swollen lymphnodes in her neck. Her feet were also discolored and really peeling between the toes. Our daughter was extremely cranky, complained of stomach and leg pain. She wouldn't try to walk at all on her own and wanted to be held constantly (which of course as a mother, knowing she was in pain, I did). They diagnosed her right then after brief discussion with Kawasaki's disease and told me that the treatment would be the same as if they would have diagnosed her with atypical Kawasaki's Disease. She needed to have an echo cardiogram to check the vessels and veins around her heart before they started her on a round of IVIG, followed by high doses of asprin and then low doses of asprin for six to eight weeks. Maybe longer if she had any heart damage. My heart broke. We were on day ten or eleven and at this point I had been told it was important risk wise to have the treatment by day ten. We weren't sure if we'd made the cut off time. Anxiously we waited for the results of her echo cardiogram. They came back with mild inflammation but nothing too serious or concerning. I felt like bricks had been lifted from our shoulders. That night they started treatment. Longest night of our lives. She began to look physically better the next morning and I was overjoyed. She finally ate some food and had energy again. I believed we were out of the feverish woods, thanking the good Lord above we tried to watch with expectancy she would continue to trend upwards. But just like with the IV fluids, she became to become cranky and irritable. I knew something wasn't quite right. Around noon her fever returned and so did the vomiting. Immediately they treated her for the fever and continued the high doses of asprin. Her fever dissipated around four the following morning. After speaking to the doctor's, we decided to keep our daughter in the hospital for 48 more hours for observation while continuing high dose asprin and to make sure if she relapsed we we're ready with a second round of IVIG. Luckily so far, we are home on low doses of asprin awaiting a second echocardiogram in a few weeks. We've only just left the hospital and I find myself holding my breath while I watch her sleep. Praying to God to protect her little heart and hold her in his almighty hands. I'm so grateful for the team of doctors who fought for her to be observed, examined and treated quickly once we were admitted. Especially the infectious disease doctor that we saw the one time in the ER. I wish I could remember his name. The Rheumatoidist doctor who asked us to begin at the start of her illness, who listened closely, asked for pictures and looked at her carefully during his examination and just solidifying our Kawasaki's diagnoses so we could begin treatment by seeing the cardiologist and beginning the IVIG and asprin. Thinking about how cranky she was and now equating that with the pain she must have been feeling or her throwing up on herself in her sleep. The fear and worry... Knowing something very real was wrong but not having answers right away. Our pediatrician was wonderful, knocking out possiblities for the Children's Hospital before we even had arrived. There still may be a long road ahead of us but seeing her smile without a fever and have fun again melts me. We love our child so much and realizing just how sick she was is sobering to how much we still need to fight for our kids and find out more about this disease.
Possible Scarlett Fever
The Common Cold
In the process of low dose asprin, awaiting second echo cardiogram.