Sharing about something dear to my heart - Kawasaki Disease
Jan 26, 2015 20:15:14 GMT
elaine, Nicole in TX, and 3 more like this
Post by Deleted on Jan 26, 2015 20:15:14 GMT
I hope you all will humor with an awareness post.
In October of this last year, my 3 year old was fine one night after a long day in the sun. We put him to bed. He woke up the next morning with a bright red rash, which we initially attributed to hay getting inside his clothes the day before at the farm, combined with heat. Later in the day, he developed a high fever. Then we assumed the rash was related to the fever because for whatever reason, Matthew often gets rash with illness. It just seems to be the way his immune system processes illness.
The next day he was vomiting. We thought this was related to the fever too-I know when my fever gets high, I vomit. I took him to the pediatrician, who tested him for strep and an UTI and both came back negative. The doctor said it was just a random virus.
Day 3 and 4, he was still feverish. The vomiting stopped but he was increasingly irritable and the rash spread.
Day 5, he developed shooting pains. His skin started peeling like a sunburn. I spoke to the Pediatrician that afternoon, who said I could bring him back the next day to repeat the tests.
By the evening he had bloodshot eyes and the pain was constant. I took him to the Urgent Care run by the Children's Hospital. At first the doctor there thought the same things--random virus, UTI, or Strep. As I talked about things I had seen, his body posture changed. He asked a few questions and said, "I think I know what this is but I haven't seen it in a really long time so I need to go read about it before I tell you more." He excused himself and then came back a while later. He said that Matthew had a condition called Kawasaki Disease. It's a virus that attacks the heart, and if left untreated, can cause aneurysm or heart attack. It was discovered by a doctor in the 60s who noticed a pattern among preschoolers dying of heart attack.
He transferred us to the hospital ER, and the admitting doctor agreed with the KD diagnosis. Then we were admitted and we were given an infectious disease specialist, a cardiologist and a supervising doctor. They all agreed with KD. Matthew was in the hospital for 5 days and given an infusion of blood plasma treatment called IVIG, which through some miraculous way I don't understand, helps protect the hearts of KD kids. He only needed one infusion and after 5 days we were released. His recovery has been near 3 months long. The skin peels off in sheets, and kd kids go through arthritis. Their brains and their whole bodies are literally inflamed. He was extremely miserable and irritable for a long time while the disease worked its way out of his body. KD kids develop eczema. He still has one side effect that bothers him. He had a follow up echocardiogram 2 weeks later, another a month later, and then another at the beginning of this month. He has no sign of aneurysm, but will always be at risk of developing one. He will have a cardiologist the rest of his life. Aside from one persistent side-effect with his skin, he is happy and healthy and recovered, and just celebrated his 4th birthday this weekend.
KD affects 19 out of 100,000 kids. It cannot be diagnosed until the 5th day and treatment needs to happen by day 10 for the most success. There is no diagnostic test for KD. The only way they can confirm it is after the child suffers an aneurysm. So it's diagnosed through a series of clinical observations. The primary requirement is 5 days of high fever, which is why it can't be diagnosed any sooner and why even if a patient seeks medical care at the onset of symptoms, it won't be diagnosed at that time.
We have one of the best Children's Hospitals in the country so Matthew was correctly diagnosed and treated. But because it's relatively rare, and because its symptoms on their own each mimic lots of other childhood conditions, it can often be misdiagnosed. I read things posted by other KD parents and my heart breaks for them. I had never heard of KD. I'm just glad my mommy gut told me to go to the Urgent Care, and not wait for more tests the next day. The next day would have been Friday, and by the time we would have gotten results back, it would have been into the next week and near the 10 day critical deadline. By the time he was admitted to the hospital at about 4:00 am, Matthew had displayed every single one of the conditions shown below.
Anyway, today is National Kawasaki Disease Awareness Day. KD parents are working to spread awareness about this condition. Will you take a moment to look at this chart and tuck it away in the back of your brain? If you ever know someone whose child has a high fever for 5 days in a row plus 2 or more symptoms below, they need to be evaluated for KD.
KD primarily affects children age 5 and under, and boys more than girls. It is not contagious and they have no idea how kids get it or why the kids who do get it, get it.
More information is at kdfoundation.org
Thanks for reading!
In October of this last year, my 3 year old was fine one night after a long day in the sun. We put him to bed. He woke up the next morning with a bright red rash, which we initially attributed to hay getting inside his clothes the day before at the farm, combined with heat. Later in the day, he developed a high fever. Then we assumed the rash was related to the fever because for whatever reason, Matthew often gets rash with illness. It just seems to be the way his immune system processes illness.
The next day he was vomiting. We thought this was related to the fever too-I know when my fever gets high, I vomit. I took him to the pediatrician, who tested him for strep and an UTI and both came back negative. The doctor said it was just a random virus.
Day 3 and 4, he was still feverish. The vomiting stopped but he was increasingly irritable and the rash spread.
Day 5, he developed shooting pains. His skin started peeling like a sunburn. I spoke to the Pediatrician that afternoon, who said I could bring him back the next day to repeat the tests.
By the evening he had bloodshot eyes and the pain was constant. I took him to the Urgent Care run by the Children's Hospital. At first the doctor there thought the same things--random virus, UTI, or Strep. As I talked about things I had seen, his body posture changed. He asked a few questions and said, "I think I know what this is but I haven't seen it in a really long time so I need to go read about it before I tell you more." He excused himself and then came back a while later. He said that Matthew had a condition called Kawasaki Disease. It's a virus that attacks the heart, and if left untreated, can cause aneurysm or heart attack. It was discovered by a doctor in the 60s who noticed a pattern among preschoolers dying of heart attack.
He transferred us to the hospital ER, and the admitting doctor agreed with the KD diagnosis. Then we were admitted and we were given an infectious disease specialist, a cardiologist and a supervising doctor. They all agreed with KD. Matthew was in the hospital for 5 days and given an infusion of blood plasma treatment called IVIG, which through some miraculous way I don't understand, helps protect the hearts of KD kids. He only needed one infusion and after 5 days we were released. His recovery has been near 3 months long. The skin peels off in sheets, and kd kids go through arthritis. Their brains and their whole bodies are literally inflamed. He was extremely miserable and irritable for a long time while the disease worked its way out of his body. KD kids develop eczema. He still has one side effect that bothers him. He had a follow up echocardiogram 2 weeks later, another a month later, and then another at the beginning of this month. He has no sign of aneurysm, but will always be at risk of developing one. He will have a cardiologist the rest of his life. Aside from one persistent side-effect with his skin, he is happy and healthy and recovered, and just celebrated his 4th birthday this weekend.
KD affects 19 out of 100,000 kids. It cannot be diagnosed until the 5th day and treatment needs to happen by day 10 for the most success. There is no diagnostic test for KD. The only way they can confirm it is after the child suffers an aneurysm. So it's diagnosed through a series of clinical observations. The primary requirement is 5 days of high fever, which is why it can't be diagnosed any sooner and why even if a patient seeks medical care at the onset of symptoms, it won't be diagnosed at that time.
We have one of the best Children's Hospitals in the country so Matthew was correctly diagnosed and treated. But because it's relatively rare, and because its symptoms on their own each mimic lots of other childhood conditions, it can often be misdiagnosed. I read things posted by other KD parents and my heart breaks for them. I had never heard of KD. I'm just glad my mommy gut told me to go to the Urgent Care, and not wait for more tests the next day. The next day would have been Friday, and by the time we would have gotten results back, it would have been into the next week and near the 10 day critical deadline. By the time he was admitted to the hospital at about 4:00 am, Matthew had displayed every single one of the conditions shown below.
Anyway, today is National Kawasaki Disease Awareness Day. KD parents are working to spread awareness about this condition. Will you take a moment to look at this chart and tuck it away in the back of your brain? If you ever know someone whose child has a high fever for 5 days in a row plus 2 or more symptoms below, they need to be evaluated for KD.
KD primarily affects children age 5 and under, and boys more than girls. It is not contagious and they have no idea how kids get it or why the kids who do get it, get it.
More information is at kdfoundation.org
Thanks for reading!
my BFF from high school has a daughter who had it and they had to go to Vancouver for treatment. That was a long summer. I also had a student in Japan many years ago who got it. It is rare and hard to diagnose (the parents told me). 
