Our 2/20/14 Kawasaki's experience

Personal stories of individuals and families affected by Kawasaki disease
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Our 2/20/14 Kawasaki's experience

Post by Amethyst » Wed Mar 12, 2014 9:33 pm

My son, age 6. DOB: Oct 5, 2007.

My son first became sick on Feb 16th. He had a high fever.

On Feb 17th, a rash appeared on his body. He also started vomiting, and was unable to keep anything down all day.

On Feb 18th, his rash was more pronounced. He was still vomiting so I took him to the pediatric urgent care clinic where he was diagnosed with Scarlett Fever. He was given anti-nausea medicine and antibiotics.

Feb 19th, he was still not improving and I took him to his pediatrician’s office. I was very concerned because he looked very dehydrated. His PCP agreed with the Urgent Care’s diagnosis and told me to follow up with his office in 48hrs, that he should start improving.

On Feb 20th, My son was now complaining of sharp pains in his stomach. His lips were super dry and cracked, his tongue was really red and he was red all over. His eyes were blood shot and I was extremely concerned about him becoming dehydrated and having possible kidney failure, I did not want to wait another minute so I took him to the Cooks Children’s ER.

The ER doctor examined my son and indicated he did not have Scarlett Fever, that he had every symptom of textbook Kawasaki’s Disease. High fever, rash all over his body, swollen lymph nodes, strawberry tongue, red eyes, cracked/chapped lips, red swollen palms of hands and soles of feet. He was immediately admitted to the hospital.

At 8:00am I met a Pediatric doctor specializing in Infectious Diseases. He explained what Kawasaki’s disease was. He indicated KD was causing the blood vessels throughout my sons body to become inflamed, and this can potentially cause serious, irreversible damage to his heart. He also indicated KD is treated with a high dose of IVIG, which is a blood protein product that is extracted from plasma from multiple donors and is administered through an IV. He said it was safer than receiving a blood transfusion because it was tested and sanitized to ensure its purity. He said most children after receiving IVIG show big improvement after 24 hours of administration and are better. Unfortunately, My son did not improve very much. 48 hours later, he had another high fever. At this point, his doctor called a Rheumatologist and his doctor administered another IVIG treatment. The Rheumatologist explained to me the other treatment options available in the event the IVIG did not work. My son’s skin had also started to peel really bad. He was peeling all over his body. The skin on his little hands and feet were peeling the worst, it was terribly shocking. He also started having really bad, uncontrollable itching spells, to the point where he was crying, and my little guy doesn’t ever cry. He was given Benadryl and Atarax, a medicine that reduces activity in the central nervous system. It also acts as an antihistamine that reduces the natural chemical histamine in the body. Nothing seemed to be working to help reduce his itching. He was falling asleep with exhaustion and even then, he couldn’t sleep well. The next day I asked if I could get something topical and I was given Aveno bath and a hydrocortisone cream. His itching lasted a couple of days, it was terrible and I felt so helpless.

By now it’s Wed, the following week and my son appeared to have improved. The Rheumatologist took a look at him and indicated he did not feel comfortable administering such a high dose of steroids to a child playing with balloons. My son was always in good spirits throughout this entire ordeal, he has never acted like a sickly child even when he had 104 fever and was in pain and even itching. He was always pleasant. My son appeared to be “doing good”, he was active, playing, etc. so he was discharged that evening. I was still uneasy about the entire ordeal; to me something still wasn’t right. We went home, only to rush back to the emergency room less than 10 hours later with a high fever again.

Later that morning, the Rheumatologist came into our room and briefly spoke with me. All he said to me was, “you know what we have to do next right.” My son was started on a high dose steroid treatment later the same day. He was given 750mg of steroids each day for the next 3 days. The Rheumatologist also indicated he was going to do a sonogram on him to ensure none of his other organs had been affected and there was nothing else going on. He checked his liver, pancreas, kidneys, spleen, gallbladder, etc. He was also going to run daily labs on him to check his levels. Apparently my sons liver enzymes had been dangerously high when he was admitted, over 530! My son’s sonogram came back ok, no damage to his internal organs and nothing else was noted at this time.

At this point, my son had now become severely anemic. Doctor had to do additional test to ensure his little system hadn’t shut down and stopped making red blood cells. Luckily his test results showed his little body was still fighting and even though he was producing them at a slow rate, he was still making red blood cells on his own so the possibility of a blood transfusion was delayed.

My son seemed to be doing better after the steroid infusion and his rash had diminished greatly. My son had been fever free for 24 hours so we were almost discharged again but I wasn’t confortable that his appetite was weak and his anemia levels were at a 7. His doctor agreed to keep him for observation one more night. Later that evening my son had another fever of 104. All I kept thinking was, “we were almost sent home!” So far, my son had been resistant to every treatment he was given. I was now advised that his condition had now become an autoimmune issue. There was one last option the doctors had to get this under control. At this point his doctors had to give him a bio chemical agent, a monster medicine that blocks your TNF cells and suppresses your immune system. The medicine he was given is called Remicade. Patients treated with Remicade are at increased risk for developing serious infections that may lead to hospitalization or death. Lymphoma and other malignancies, some fatal, have also been reported in children and adolescent patients treated with TNF blockers. Unfortunately there was no other choice and this was their last option.

The following morning my son was pre-medicated to receive the Remicade infusion. He had a dedicated nurse at his bedside for 2 ½ hrs while he was given the medicine because he had to be closely monitored to ensure he didn’t have any reaction during the infusion. My son had an itching spell and fever again that evening. Doctors just told me they’d be monitoring him. I spoke with his doctor the following day and she indicated if his fevers persisted, she would have to contact a physician in Boston to determine the next step because there was nothing else they knew to do with him at this point. She also indicated that once my son was fever free for 24 hours, he would be discharged.

My son was finally fever free and was discharged the following day. Upon discharge, the doctor indicated my son would not be allowed to return to school for a minimum of 2 months because his immune system was seriously compromised. I asked her if this was finally going to get rid of the KD and if his immune system was going to return back to normal. Unfortunately, she was not able to give me any concrete answers. It’s one of those things that only time will tell.

My son had a total of 3 echocardiograms while he was in the hospital. For now, each one appeared to show no damage to his heart at this point. My son will have another echocardiogram on the March 18, then another one 2 weeks later, then another at 6 weeks, 3 months, 6 months, then every year there after. I’d like to see if I could have other tests done to check his little veins and arteries as well.

In researching KD, the long terms affects of Kawasaki’s disease are unknown. About 2% of patients die from complications of coronary vasculitis from KD. Patients that have had KD must continue to have echocardiograms to screen for progression of cardiac involvement. My son is classified as a high risk patient because of the resistance to every treatment that was given to him. His official diagnosis is Atypical Refractory Kawasakis Disease, which basically means he is not a typical case and was resistant to all treatments.

We don’t know if My son will have another episode of Kawasaki’s again in his lifetime, it could happen, but there’s no way of knowing or preventing it. In addition, the chance that he will have heart damage from Kawasaki’s is also unknown.

While we were in the hospital, I learned there were some Kawasaki research centers in the US and I’ve been researching this like crazy. Currently UC San Diego are doing studies on Kawasaki’s as well as studies with adult that had Kawasaki’s as children. While we were in the hospital, I had the opportunity to speak to Dr. Jane Burns, from UC San Diego, their lead KD physician. I shared my sons case with her, as well as the concerns I had that his doctors had no other treatment options. She ensured there were still other treatment options available if needed. She also gave me the contact information of the team conducting their current study. I’ve contacted then and they are sending me more information and documentation for me to complete.

For now, my sons heart health, his anemia and immune system are my focus. I am watching him closely and pray that he continues to be fever free. We have a very long and challenging 2 months ahead of us, especially since it's just him and me and I am the sole provider. I truly believe my diligence saved my son's life and potentially immediate serious damage to his little heart.

On another note:
This is the second time in my son’s life time where he has ben afflicted with something rare. When he was 15months old, he came down with a rare rash that appeared to start hemorrhaging. He was quarantined in ICU for 8 days at Cooks Children. I was never given a diagnosis of what he had. His doctors did not know if it was an infection or an allergic reaction to something. I was just told, “it kind of looks like this, but it isn’t….but it also looks like this, but it isn’t that either. We don’t really know what it is but we don’t think it was life threatening”, then we were discharged. That was almost 5 years to the date. Besides this last episode, that was the most nerve-wracking experience of my life. Not knowing what it was or how I could prevent it or worse, what the long-term effects of it are, was horrific!! After a lot of researching and trying to get some answers, I finally had to accept the fact that I would never know what he had. The episode he had at 15months and the Kawasaki’s disease are not related to one another. He was a very healthy little boy until he had KD.

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