Caden's story (Atypical Kawasaki Disease at 19 months)

Personal stories of individuals and families affected by Kawasaki disease
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momofthree
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Caden's story (Atypical Kawasaki Disease at 19 months)

Post by momofthree » Tue Jan 26, 2016 11:22 am

On this 6th Annual Kawasaki Disease Awareness Day I am sharing my son's experience with Kawasaki Disease in order to help raise awareness of this mysterious, rare illness.


Caden’s story (age 19 months)

Day1
Caden became sick on Wednesday Jan. 28, 2015. Several nights prior to the fever he began awakening during the night crying out, but settling down quickly with a rub on the back. Wednesday he woke up not acting like his happy self and didn’t want much breakfast. I dropped him off with grandma for the day and he seemed more clingy than usual. He was irritable for her that day and she spent most of the day carrying him around. He refused to eat lunch. I knew he was not feeling well so I checked his temperature when we returned home and it was 100.2.

Day 2
Caden’s fever continued to stay around 100. He was more irritable than expected with just a low grade fever. He sounded a bit congested with a stuffy nose and mild dry cough. He was also drooling. I just thought he had a cold. I was unable to get off work so he went to grandmas for the day again. He continued to be irritable and not eat well for her. He dozed on and off during the day. When I picked him up she told me about a rash to his groin area that she noticed in the morning with his first diaper change.
When I got him home I took a look and the rash was very bright red and raised just to the left side of his groin area and he had a red rash that looked like little spots to his chest and he had red cheeks. His fever was now over 101. He became extremely irritable especially at night not sleeping more than a few hours at a time. He would wake up and cry for an hour at a time despite me walking him around the house. It reminded me of when he was colicky as a newborn. When he did sleep he seemed to be very restless and squirmy and insisted on being held.

Day 3
I called his pediatrician first thing in the morning for an appointment as I felt with all his drooling it could be strep throat. His temperature had continued to stay between 100 and 101 during that morning. The rash had now spread to his arms, legs, and back. It also looked more like large hives that covered his body instead of little red spots, like an allergic reaction. His eye lids were red and puffy and he continued with a mild cough and stuffy nose.
At the doctor’s office his temperature spiked to 103.8 and he became very lethargic. I remember being very worried about him in the waiting room. He could hardly sit up in my lap. The nurse gave him Advil at the office and instructed me to alternate Tylenol and Advil every 3 hours. After a thorough exam, his pediatrician felt he had a virus. She did seem worried about him though and instructed to bring him back on Monday if the fever had not resolved as it was now Friday.
That afternoon when he woke from his nap, his temperature had spiked again to 104.5 and the whites of his eyes turned red. I attributed this to his high fever. I searched the internet for an explanation to his symptoms. It’s not that I didn’t trust his doctor, but I just had this strong feeling that something more was wrong with Caden than a “run of the mill virus”. He had been sick before, but never this sick. I came across scarlet fever, measles, and Kawasaki Disease. I am a registered nurse and had heard of Kawasaki Disease before, but didn’t think it could be that as he wasn’t showing many of the “classic symptoms” of KD. My husband encouraged me to stop searching as he felt like I was just scaring myself and I didn’t want to be “that mom” that was searching for something wrong with my child.

Day 4 and 5
Despite alternating Tylenol and Advil, Caden’s fever still remained just above 101. It would spike to 102 when it was time for another dose. His body rash had faded significantly by day 4 and was nonexistent by day 5 , but the very red raised rash to his groin area remained and his very red cheeks and puffy eyelids and red eyes continued. He continued to be extremely irritable, not wanting to eat much or drink. He slept in several hour stretches and would wake crying. He was inconsolable at night. At times he did not want to even walk. He would cry if I even set him down for a second. During his evening bath on day 5, I noticed his left ankle looked puffy and both his soles of his feet were very red.

Day 6
Monday morning came and his fever remained however it would decrease to 99 with Tylenol and/or Advil and spike only to 101. He started to have small periods of time that he seemed to feel better and even started smiling a little bit. I scheduled another appointment as his fevers still continued and after not eating and drinking I was concerned about dehydration.
Upon seeing Caden later that morning, his doctor felt he looked quite a bit better than on Friday and she caught him in this “window” of time where he did appear better. She again said he had a virus and he looked to be on the tail end of it. I laid him down on the exam table for her to finish her exam and she noticed his red, puffy eyes right away. I mentioned that they started after our last appointment. She then became concerned and told me about Kawasaki Disease and she wanted to take some blood. She explained that she would be checking his platelets and would expect them to be very elevated if he had Kawasaki Disease. She said not to worry as this was rare, but she just wanted to make sure since he now had a fever for 6 days. She explained that there is a 10 day opportunity for treatment.
When we returned home, I did what any mom would do and searched the internet for anything relating to Kawasaki Disease. I now felt like he had most of the classic symptoms. At lunchtime, his tongue appeared very red and “strawberry-like” with white spots. His feet started to appear puffy and again his left ankle swelled almost before my eyes. I was on pins and needles awaiting the lab results and thought I was just seeing symptoms that were really not there because I had read all about the disease.
Caden’s pediatrician called with his lab results about 6pm that evening and explained that his platelets were elevated but not enough to be considered Kawasaki Disease. He also had some other values CRP and ESR that were elevated, but also indicative of a viral illness. So she again stated that she really felt he was on the very end of a viral illness that just “hit him” harder than a usual viral illness and he should be back to normal in a few days. As I was talking to her, Caden’s lips became very red like they were chapped right before my eyes. I explained this to her and the puffy, red soles of his feet, and the red “strawberry” tongue. She told me I must have read all about the disease and was seeing symptoms that were not there because he had none of those on examination that morning. I then explained that I was really concerned because he was just so sick and I didn’t want to miss something as the possible heart issues really scared me. She agreed to consult with the pediatric cardiologist if he continued to run a fever in the morning and at least schedule and ECHO of his heart. We ended the conversation agreeing that I would call in the am with an update of his condition. I could tell at this point she was very concerned about him also.

Day 7
Tuesday morning Caden’s fever was down to 99.1 despite a really bad night. He was again extremely irritable and inconsolable during the night. I really felt he was in pain after reading about the possibility of joint pain and headaches/stomachaches. He seemed to be grabbing at his knees and was very restless. He was just uncomfortable. His red/puffy eyes remained, but I no longer saw the red tongue or red soles of his feet. His groin rash continued though and looked redder. His lips now looked cracked on the sides and were still red as if chapped. His doctor called me around 6:30 in the morning and I had missed her call as I was on my way to work (another day I was unable to find a sub). Caden went to grandma’s again and my heart broke when I had to leave him because he clung to me crying and I had to pry him off of me. I just knew something was really wrong with my son as he loves to go to grandma’s house. My cell phone has no reception at work so I was unable to see I had missed a call. I called the office around 8am when they opened and was told she was on her way in and she was trying to get in touch with me. I went outside to get reception and listened to 2 messages she had left. In the messages she explained that she reviewed his bloodwork again and was not comfortable with her prior decision of just a viral illness and she had indeed consulted with both the pediatric cardiologist and pediatric hospitalist. They both agreed that with Kawasaki Disease it is better to over treat than under treat. This meant that they would much rather treat it as KD than to not treat and have the possibility of lasting heart damage. I immediately called her back and she explained that Caden needed to be admitted to the hospital for treatment right away.
I called his grandma to get him ready and I left work. We were admitted to the pediatric unit later that morning after a long wait in admitting. He was greeted with a long line of doctors and student doctors once he was admitted. We saw the pediatric cardiologist, pediatric hospitalist, and infectious disease doctor (and each of their student doctors). Kawasaki Disease is rare and many were seeing it for the first time. Caden had an ECHO of his heart completed early that afternoon which showed some inflammation that was indicative at this stage of Kawasaki Disease. Caden continued to have what I called “pop-up” symptoms because they really would come out of nowhere and be gone before he was examined. The doctor’s kept missing these symptoms, but several student doctors saw his swollen feet and red soles. The red eyes, puffy eyelids, rash, and fever remained the major symptoms throughout. The hospitalist decided not to wait any longer for further lab results from infectious disease and we agreed to proceed with the treatment as our 10-day window was closing in. They diagnosed him with atypical Kawasaki Disease.

He received an infusion of IVIG around 7:30 that evening that continued until 8:30 the next morning. I held Caden during the first half of his infusion and within several hours I noticed the rash on his cheeks became less noticeable.
By the end of his infusion the next morning his fever was gone, his eyes were much clearer, and he just had a “healthier glow” to him. He even felt good enough to play in his crib with the hospital toys. After disconnecting him from his IV, I changed his diaper and noticed the rash on his groin had faded substantially, but now he had peeling skin where the rash once was.
Over the next several days and weeks, his toes and groin area would peel. I was so thankful that we received prompt treatment for Caden and the timeliness of his diagnosis as we found out the peeling skin is the start of the second stage of the disease progression. Treatment in the first stage of the disease lessens the risk of developing heart aneurysms. He had a 3 day hospital stay for the IVIG infusion, high dose aspirin therapy, and round the clock vital signs. He was discharged home on a daily aspirin and follow up ECHO and EKG set for 6 weeks.
Slowly over the next several weeks, Caden’s rash went away completely and he returned to his normal energetic self. His March 11th ECHO showed no sign of inflammation or aneurysms and his EKG was normal. He has received a clearance from his pediatric cardiologist for 5 years.

DeysiLVx2
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Re: Caden's story (Atypical Kawasaki Disease at 19 months)

Post by DeysiLVx2 » Wed Mar 30, 2016 9:39 am

Thank you for posting your son's story. I am completely out of my mind as my 1 year old granddaughter was officially diagnosed with KD on 03/22/2016 and treated with IVIG for over 12 hours. She was released on 03/23/2016 and has been taking daily aspirin doses. It is 8 days later and she is not out of it. Her eyelids are red, lips are red and hands are still peeling. How long until she gets better? Should I be concerned?

On 3/22/16 one aneurysm was found, yesterday's follow up check up indicated two aneurysm at 4mm. Her fever started on 03/06/2016 and blood work was not performed until 03/18/2016 which showed elevated ESR and CRP values. We were told that a full body CAT scan will be done to rule out any more aneurysms. I feel the health care provider is still in the testing phase and no longer hear anything related to treatment. Can I demand for a second IVIG treatment? She does not have fever but is warm to the touch. She acts normal but occasionally cries like she's in pain. Most nights she is restless but does sleep longer than at the onset of the symptoms. She is a fraternal twin and her sister, thank God, is healthy. Like I said, I am completely out of my mind and sick to my stomach thinking about the length of time that has gone by and the possible outcomes. What else can we do?

katbeevers
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Re: Caden's story (Atypical Kawasaki Disease at 19 months)

Post by katbeevers » Sun Apr 24, 2016 4:26 pm

I'm surprised they didn't give her a 2nd IVIG. How is she currently doing?

tatodelblanco
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Re: Caden's story (Atypical Kawasaki Disease at 19 months)

Post by tatodelblanco » Tue May 03, 2016 12:15 pm

Hello DeysiLVx2, I hope your grandaugther is doing better. My son was diagnose on March 7 2016. He was diagnosed at day 11 and treated with IVIG and three doses of Steroids, left the hospital after five days and he got aneurysms from his first echo at hospital. We have followed up with weekly echos and they did a CTA to make sure they have not "travelled" behind the reach of the eco towards the back of the heart. The good news was that there was nothing wrong discovered on the CTA. My son is on a daily aspirin (he is about to turn two years of age) he takes Plavix and hematologist and cardiologist are waiting results to see if Plavix and Aspirin are doing their job. Blood work has been done often and indications of inflammation are good. Please let us know how your grandaugther is doing.

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