Not Just Coronary Arteritis, Kawasaki Disease Is a Myocarditis, Too -- Dahdah 55 (14): 1507 -- Journal of the American College of Cardiology
Myocarditis: Inflammation of the myocardium, the heart muscle.
Tuesday, March 30, 2010
Monday, March 29, 2010
2010 Vasculitis Awareness Week
Visit:
http://www.vasculitisfoundation.org/+Kawasakidisease
OUR STRENGTH IS YOUR SUPPORT
Please Take an Active Role in the Upcoming
2010 Vasculitis Awareness Week
April 25 - May 1, 2010
This is the week we join together on behalf of our common goal -- to raise public awareness, create a better understanding of vasculitis, and draw attention to vasculitis as an important health issue that cannot be ignored.
Your active support is crucial as the Vasculitis Foundation looks to the future. If each of us makes a goal to participate in Vasculitis Awareness Week, our strength will continue to build and make a positive difference in the lives of those living with vasculitis.
Opportunities to participate in Awareness Week are endless. Following are a few examples:
Distribute VF Brochures to doctors' offices, pharmacies, hospitals, libraries
Contact local civic clubs and offer to speak about your personal experience with vasculitis
Coordinate a display at a health fair, store, or hospital
Ask your city government to publicly acknowledge Vasculitis Awareness Week
Write a letter to your congress person
Contact your local media to be interviewed about vasculitis
Plan a fundraising event
Share information about Vasculitis Awareness Week with your contacts on Facebook, Twitter and other online sites
Please join us in wishing Cindy Abbott a safe and successful journey as she raises vasculitis awareness by climbing Mt. Everest beginning April 1. Read her compelling story of courage -- "Reaching Beyond the Clouds" at http://www.vasculitisfoundation.org/node/2247
Please make a commitment now to participate in Vasculitis Awareness Week.
For more information on Awareness Week and on how you can participate, please visit the VF website and download a copy of the Vasculitis Awareness Handbook: http://www.vasculitisfoundation.org/news/2009/10/30/2010-awareness-week-dates-announced or contact Judy Blankenship, VF Events Coordinator, jblankenship@vasculitisfoundation.org or 816-436-8211.
Sincerely,
Joyce Kullman
Vasculitis Foundation
Saturday, December 5, 2009
My son Tyler, this is his story
This is the story of how Tyler came about being diagnosed with Kawasaki Disease:
It started on Friday with fever. He had no other symptoms except fatigue. By Sat. the fever was hard to keep under control so we took him to the Emergency room where they looked him over and said his ear was a little red and gave us antibiotics for an ear infection. He had two doses, early sunday morning, around 6:00 am or so, Tyler developed a rash from head to toe and was vomiting.
We took him back to the ER and they did not do anything except more or less glance at the rash and said its probably an allergic reaction. I could see where they would think that but my gut was telling me more. They sent us home with a new antibiotic and told me to give him some benadryl to help with the rash. Sunday evening he is getting dehydrated a little. His tongue had turned stawberry red and it was like his taste buds was raised, and it was so dry. By monday he was worse, he was so irritable, wouldn't take anything by mouth in the way of food or liquids and he was having some peeling on his feet. We took him back to ER and mind you he still has rash, high fever, strawberry tongue, and they said it would be at least 4 hours before they even got him to the back. I was so scared at this point, I mean how do you go from an ear infection to him not really responding, being dehydrated, high fever, rash etc. Something was seriously wrong and it felt as if they just thought I was an overreactive mother or something. A lady followed us out of the hospital because we decided to try to find another ER and told us of War Memorial, so we took Tyler there. They did take blood and his counts were all off but they said it was typical of a virus and thats what they felt he had. They told us to keep giving him syringes of liqued every ten minutes or so. We had already done this and continued to do throughout Monday night. Me and my husband Derrick was literally taking shifts on this. It was my turn two hours later I got up and after holding tyler for ten minutes or so he finally has a bowel movement, but it was like nothing I had seen. It was like a slimy gelatin substance (sorry but I feel the need to be graphic) that was black in color. I get him a new diaper, and keep that one in a baggie. A few more minutes past and he finally pee's but its bloody, I panic and go get Derrick up and tell him we have to get him back to the doctor, well its Tuesday (this was all on labor day weekend the peds was closed monday) the Peds office opened in less than an hour so we get ready to go there when Tyler's lips start bleeding, nothing had touched them they just bled. Well we get him to the Peds office and Tylers usual doc isn't there yet so another doctor takes one look at him and I knew even more than before it wasn't good. He tells me to take him up to the hospital which is right beside the peds office that he will let them know we were coming and he'll meet us there. They took Tyelrs blood after they finally found a vain and then he does a spinal tap on Tyler. It came back negative for bacterial menagitis but as stated before the counts were way off. He decided to go ahead and treat him for bacterial menagitis and start him on high fluids and rocefin.
The fluids are the only thing that is doing anything for Tyler and that was hydrating him, he wasn't getting any better. He was addmitted in the hospital Tueday and they continued this treatment and with getting no results. The doctor did call for an infectous disease doctor who came down from Maryland on thursday. Would you believe that this doctor comes to the doorway and says he thinks he is getting the right treatment. He only looked at Tylers file, he never looked at Tyler, I was just, I just couldn't say anything, because he just turns and walks away, I remember me and Derrick just looking at each other stupified. By friday night Tyler was swollen, they claimed it was mainly hands and feet but it wasn't, I know what my child looks like he was swollen all over, and was gaining weight. He was gaining all this weight but wasn't eating or drinking.
By saturday morning I was done, I had had it, I felt like I was staring death in the face, and I wasn't going to just sit there holding him while he died (which is what I felt was happening) I called our pharmacy to ask them about rocefin, I had asked if it could cause the swelling and after I told the pharmicist about the possible allergic reaction to the amoxicillin last sat. night she said rocefin was a form of amooxicillin and asked what he was being treated for, I told her, and she gave me other antibiotics that would be jsut as effective but hopefully no allergic reaction. So I thought at this point that his swelling was from another allergic reaction, and go back upstairs and confront his nurse with what the pharmacist had told me. She tries to reassure me, but I couldn't listen at that point, I wanted a doctor in there. Well finally the doctor who was on call that saturday day came in and me and Derrick were just done, Derrick however can maintain his composer under all this stress (probably from his law enforcement background) I however can not. I didn't care about the hospital staffs feelings or anything else. The doctor and intern appeared in the door and introduced himself and the intern and I looked at him and said I want the rocefin stopped. He asked why I then explained and he said he felt at this point we should continue, I said no I want it stopped. He said I'm going to take a look at Tyler now, and I really felt as though he was going to be like the others and just blow this off. But he looked up at us and asked "have you ever herad of Kawasaki disease". We had not hear of it so he explains what it is and says he feels like that was what was happening to Tyler.
Everything went so quickly after that, I didn't have time to absorb all of this when we were off by ambulance heading for the Childrens Hospital in DC because City Hospital could not treat Kawasaki Disease. Derrick was behind us and arrived about 45 minutes after me and Tyler at the children's hospital. They looked him over and took the entire week events down and this was the ninth day of running a fever and said we need to treat him with an IVIG which is gammaglobulin (an ingrediant in blood). They gave him his first IVIG along with benadryl and started him on high doeses of aspirin to help from keeping aneurysms from forming. Later Sunday he was responding to it a little. We felt good. Well that night his fever spiked back up and the rash was back and after the team came in they said lets do another round of IVIG. Well it worked. withing 4-5 hours Tyler was sitting in my arms and actually smiling some and taking a couple bites of grilled cheese. I cried I was so happy and relieved. The swelling of his body was going down and rash was gone. Only a parent of Kawasaki I believe can truely understand how I felt in that moment in time. He went from being almost lifeless to smiling at me, other than when my two children were born that was one of the best moments, happiest moments I had ever felt. I was breathing again, I know its not possible but it had felt like I was holding my breath throughout all of this.
I knew we weren't completely in the clear. we had an echo done and a couple days later we was headed for home. At that time Tylers echo they said was normal. His skin was peeling mainly on his extremities. (his hands, feet and his armpits which is normal with Kawasaki disease. He had another appointment in 4 days to come back and get another echo, they said his left coroanry was noticably inflammed and resembled a string of pearls but no true anyrysms had formed. (Medical terms: Estasia of right cornary artery) We had many more echos from then till now, my understanding is they usually do one a week after being discharged, then 4 weeks from that then 3 months then 6 months then a year. Well we had about ten in 8 months time. Tyler was also on the aspirin therapy long after the usual which is 2-3 months. Tyler was taking aspirin for 7-7 1/2 months. They still say when he goes in that by looking at his echo compared to a child who never had Kawasaki you can tell that he has it. But thankfully he never formed aneurysms from it.
He is doing good right now, that first year he got sick alot and still catches things easier than he did before the Kawasaki disease came on but he's here, he's a happy 3 year old and I thank god every day for my chidlren.
Our current pediatrician is none other than the doc that was on call that Saturday who discovered what was happening to Tyler, he was our miracle doctor and I thank him for showing up when he did.
IWANTED TO ADD: That Tyler also had to learn how to walk and talk all over again after Kawasaki Disease came about with him.
I also would like to thank my daughter Caitlyn, she was truely amazing through this whole ordeal and continues to be now. Most children dont have the patience to sit in one place all day surrounded by doctors and everyone talking, but Caitlyn did, she is the best of a big sister, she would kiss Tyler and say "I hope you feel better bubby". My children are truely amazing.
It started on Friday with fever. He had no other symptoms except fatigue. By Sat. the fever was hard to keep under control so we took him to the Emergency room where they looked him over and said his ear was a little red and gave us antibiotics for an ear infection. He had two doses, early sunday morning, around 6:00 am or so, Tyler developed a rash from head to toe and was vomiting.
We took him back to the ER and they did not do anything except more or less glance at the rash and said its probably an allergic reaction. I could see where they would think that but my gut was telling me more. They sent us home with a new antibiotic and told me to give him some benadryl to help with the rash. Sunday evening he is getting dehydrated a little. His tongue had turned stawberry red and it was like his taste buds was raised, and it was so dry. By monday he was worse, he was so irritable, wouldn't take anything by mouth in the way of food or liquids and he was having some peeling on his feet. We took him back to ER and mind you he still has rash, high fever, strawberry tongue, and they said it would be at least 4 hours before they even got him to the back. I was so scared at this point, I mean how do you go from an ear infection to him not really responding, being dehydrated, high fever, rash etc. Something was seriously wrong and it felt as if they just thought I was an overreactive mother or something. A lady followed us out of the hospital because we decided to try to find another ER and told us of War Memorial, so we took Tyler there. They did take blood and his counts were all off but they said it was typical of a virus and thats what they felt he had. They told us to keep giving him syringes of liqued every ten minutes or so. We had already done this and continued to do throughout Monday night. Me and my husband Derrick was literally taking shifts on this. It was my turn two hours later I got up and after holding tyler for ten minutes or so he finally has a bowel movement, but it was like nothing I had seen. It was like a slimy gelatin substance (sorry but I feel the need to be graphic) that was black in color. I get him a new diaper, and keep that one in a baggie. A few more minutes past and he finally pee's but its bloody, I panic and go get Derrick up and tell him we have to get him back to the doctor, well its Tuesday (this was all on labor day weekend the peds was closed monday) the Peds office opened in less than an hour so we get ready to go there when Tyler's lips start bleeding, nothing had touched them they just bled. Well we get him to the Peds office and Tylers usual doc isn't there yet so another doctor takes one look at him and I knew even more than before it wasn't good. He tells me to take him up to the hospital which is right beside the peds office that he will let them know we were coming and he'll meet us there. They took Tyelrs blood after they finally found a vain and then he does a spinal tap on Tyler. It came back negative for bacterial menagitis but as stated before the counts were way off. He decided to go ahead and treat him for bacterial menagitis and start him on high fluids and rocefin.
The fluids are the only thing that is doing anything for Tyler and that was hydrating him, he wasn't getting any better. He was addmitted in the hospital Tueday and they continued this treatment and with getting no results. The doctor did call for an infectous disease doctor who came down from Maryland on thursday. Would you believe that this doctor comes to the doorway and says he thinks he is getting the right treatment. He only looked at Tylers file, he never looked at Tyler, I was just, I just couldn't say anything, because he just turns and walks away, I remember me and Derrick just looking at each other stupified. By friday night Tyler was swollen, they claimed it was mainly hands and feet but it wasn't, I know what my child looks like he was swollen all over, and was gaining weight. He was gaining all this weight but wasn't eating or drinking.
By saturday morning I was done, I had had it, I felt like I was staring death in the face, and I wasn't going to just sit there holding him while he died (which is what I felt was happening) I called our pharmacy to ask them about rocefin, I had asked if it could cause the swelling and after I told the pharmicist about the possible allergic reaction to the amoxicillin last sat. night she said rocefin was a form of amooxicillin and asked what he was being treated for, I told her, and she gave me other antibiotics that would be jsut as effective but hopefully no allergic reaction. So I thought at this point that his swelling was from another allergic reaction, and go back upstairs and confront his nurse with what the pharmacist had told me. She tries to reassure me, but I couldn't listen at that point, I wanted a doctor in there. Well finally the doctor who was on call that saturday day came in and me and Derrick were just done, Derrick however can maintain his composer under all this stress (probably from his law enforcement background) I however can not. I didn't care about the hospital staffs feelings or anything else. The doctor and intern appeared in the door and introduced himself and the intern and I looked at him and said I want the rocefin stopped. He asked why I then explained and he said he felt at this point we should continue, I said no I want it stopped. He said I'm going to take a look at Tyler now, and I really felt as though he was going to be like the others and just blow this off. But he looked up at us and asked "have you ever herad of Kawasaki disease". We had not hear of it so he explains what it is and says he feels like that was what was happening to Tyler.
Everything went so quickly after that, I didn't have time to absorb all of this when we were off by ambulance heading for the Childrens Hospital in DC because City Hospital could not treat Kawasaki Disease. Derrick was behind us and arrived about 45 minutes after me and Tyler at the children's hospital. They looked him over and took the entire week events down and this was the ninth day of running a fever and said we need to treat him with an IVIG which is gammaglobulin (an ingrediant in blood). They gave him his first IVIG along with benadryl and started him on high doeses of aspirin to help from keeping aneurysms from forming. Later Sunday he was responding to it a little. We felt good. Well that night his fever spiked back up and the rash was back and after the team came in they said lets do another round of IVIG. Well it worked. withing 4-5 hours Tyler was sitting in my arms and actually smiling some and taking a couple bites of grilled cheese. I cried I was so happy and relieved. The swelling of his body was going down and rash was gone. Only a parent of Kawasaki I believe can truely understand how I felt in that moment in time. He went from being almost lifeless to smiling at me, other than when my two children were born that was one of the best moments, happiest moments I had ever felt. I was breathing again, I know its not possible but it had felt like I was holding my breath throughout all of this.
I knew we weren't completely in the clear. we had an echo done and a couple days later we was headed for home. At that time Tylers echo they said was normal. His skin was peeling mainly on his extremities. (his hands, feet and his armpits which is normal with Kawasaki disease. He had another appointment in 4 days to come back and get another echo, they said his left coroanry was noticably inflammed and resembled a string of pearls but no true anyrysms had formed. (Medical terms: Estasia of right cornary artery) We had many more echos from then till now, my understanding is they usually do one a week after being discharged, then 4 weeks from that then 3 months then 6 months then a year. Well we had about ten in 8 months time. Tyler was also on the aspirin therapy long after the usual which is 2-3 months. Tyler was taking aspirin for 7-7 1/2 months. They still say when he goes in that by looking at his echo compared to a child who never had Kawasaki you can tell that he has it. But thankfully he never formed aneurysms from it.
He is doing good right now, that first year he got sick alot and still catches things easier than he did before the Kawasaki disease came on but he's here, he's a happy 3 year old and I thank god every day for my chidlren.
Our current pediatrician is none other than the doc that was on call that Saturday who discovered what was happening to Tyler, he was our miracle doctor and I thank him for showing up when he did.
IWANTED TO ADD: That Tyler also had to learn how to walk and talk all over again after Kawasaki Disease came about with him.
I also would like to thank my daughter Caitlyn, she was truely amazing through this whole ordeal and continues to be now. Most children dont have the patience to sit in one place all day surrounded by doctors and everyone talking, but Caitlyn did, she is the best of a big sister, she would kiss Tyler and say "I hope you feel better bubby". My children are truely amazing.
Finding your voice and being heard: Promoting awareness of KD....
Jane C. Burns, M.D.....
2006....
.. ..
"The way we change the world is one person at a time."....
Premise: Everyone has a voice, however soft, and can be heard.....
.. ..
Level I: The Whisper....
1) Tell a neighbor about KD....
2) If your child is recovering from KD, go out of your way to work his/her illness into every conversation:....
Dry cleaner: How are you today?....
KD parent: Pretty tired, my child has been ill.....
Dry cleaner: Really, hope it’s not too serious.....
KD parent: My child has ....Kawasaki.... disease. Every heard of it? It’s a strange disease that is now the leading cause of acquired heart disease in children in the ....U.S....., etc.....
3) Tell your church/ synagogue group, people at work, tennis partner, relatives about KD....
4) Help your older child do a project for science class on KD. Use the UCSD, AHA, or other websites for color photos and information.....
5) Add this to your signature on your e-mail so that you automatically send it with each message:....
"Ask me about Kawasaki Disease! The way we change the world is one person at a time." ....
....
Level II: In a Louder Voice....
1) Contact your local health dept. and find out if KD is a reportable disease in your state. Only 22 states currently require the reporting of KD by law. Find out which hospitals in your area see the greatest number of KD patients. Calculate the anticipated number of KD cases/year in your community by contacting managers of local data bases who make population estimates for local planners and government. Find out how many children under the age of 5 there are in your community. Estimate an average attack rate for KD at 20/100,000 and do the arithmetic. Are the rates for diagnosed KD patients low or high in your community? Discuss these results with the epidemiologists at the health dept.....
2) Contact the pediatric infectious disease specialist at the hospital that sees the most KD patients and volunteer your time for any research projects. Frequently researchers would like to have someone to help call back families to participate in research studies, organize a data base, send out mailings, etc.....
3) Contact your local AHA office and find out about participating in fund raising activities, Walk-a-thons, etc. The AHA is an important supporter of KD research and educational activities.....
Make a T-shirt for the Walk-a-thon that says, “Ask me about ....Kawasaki.... disease!” on the back or order T-shirts from the KD Foundation (kdfoundation.org). ....
4) Write to your representatives in Congress and your senators and ask them to support bills for medical research. Give them some information about KD so that staffers can educate themselves. Include one of the educational website addresses for KD.....
5) Order the “Ask me about Kawasaki Disease” button from the KD Foundation and wear it when you have the energy to talk to strangers.....
.. ..
Level III: The Shout....
1) Ask your local Health Dept. of they would be willing to print up flyers on KD in a format appropriate for your community. Use the San Diego English-Spanish flyer as a model. Next, mobilize a group of parent volunteers to distribute the flyers. Consider distributing flyers just prior to "peak" KD season, usually Jan.-April in many communities. Suggestions for distribution include:....
a) Counter of local pharmacy where you wait for your prescriptions. Most pharmacists are happy to have a stack of flyers available for customers.....
b) High-end children’s clothing stores: Gymboree, Baby Gap, etc.....
c) Contact local school board and ask if flyer can be included with the new student packet that is distributed to families of prospective kindergartners during the summer....
d) Pediatrician or family practitioner office waiting rooms. Parents are happy to have something to read during the long waits. This has the added advantage of increasing physician awareness about the disease.....
e) Day care or child care centers....
f) Teen parent programs through the school system....
2) Contact your local TV station and ask if they would do an educational spot on KD. It helps to have a KD expert in your community. Offer to have you and your family interviewed about KD and your child’s illness. TV stations can actually show photographs directly from the UCSD website to illustrate the features of KD.....
3) Design a catchy educational poster about KD that could be posted on community bulletin boards in churches, schools, businesses. Include the KD Foundation website where people can go for more information.....
4) Become trained as a lay community health worker and give lectures to local groups such as school nurses, teachers, service clubs, church groups, high school students as part of their health curriculum.....
----------------------------------------------------------------------------------------------------------------------....
Add 3 new ideas to this list and e-mail to ..jcburns@ucsd.edu... I will make sure your ideas are posted on our website.....
.. ..
1)....
.. ..
.. ..
2)....
.. ..
.. ..
3)....
Jane C. Burns, M.D.....
2006....
.. ..
"The way we change the world is one person at a time."....
Premise: Everyone has a voice, however soft, and can be heard.....
.. ..
Level I: The Whisper....
1) Tell a neighbor about KD....
2) If your child is recovering from KD, go out of your way to work his/her illness into every conversation:....
Dry cleaner: How are you today?....
KD parent: Pretty tired, my child has been ill.....
Dry cleaner: Really, hope it’s not too serious.....
KD parent: My child has ....Kawasaki.... disease. Every heard of it? It’s a strange disease that is now the leading cause of acquired heart disease in children in the ....U.S....., etc.....
3) Tell your church/ synagogue group, people at work, tennis partner, relatives about KD....
4) Help your older child do a project for science class on KD. Use the UCSD, AHA, or other websites for color photos and information.....
5) Add this to your signature on your e-mail so that you automatically send it with each message:....
"Ask me about Kawasaki Disease! The way we change the world is one person at a time." ....
....
Level II: In a Louder Voice....
1) Contact your local health dept. and find out if KD is a reportable disease in your state. Only 22 states currently require the reporting of KD by law. Find out which hospitals in your area see the greatest number of KD patients. Calculate the anticipated number of KD cases/year in your community by contacting managers of local data bases who make population estimates for local planners and government. Find out how many children under the age of 5 there are in your community. Estimate an average attack rate for KD at 20/100,000 and do the arithmetic. Are the rates for diagnosed KD patients low or high in your community? Discuss these results with the epidemiologists at the health dept.....
2) Contact the pediatric infectious disease specialist at the hospital that sees the most KD patients and volunteer your time for any research projects. Frequently researchers would like to have someone to help call back families to participate in research studies, organize a data base, send out mailings, etc.....
3) Contact your local AHA office and find out about participating in fund raising activities, Walk-a-thons, etc. The AHA is an important supporter of KD research and educational activities.....
Make a T-shirt for the Walk-a-thon that says, “Ask me about ....Kawasaki.... disease!” on the back or order T-shirts from the KD Foundation (kdfoundation.org). ....
4) Write to your representatives in Congress and your senators and ask them to support bills for medical research. Give them some information about KD so that staffers can educate themselves. Include one of the educational website addresses for KD.....
5) Order the “Ask me about Kawasaki Disease” button from the KD Foundation and wear it when you have the energy to talk to strangers.....
.. ..
Level III: The Shout....
1) Ask your local Health Dept. of they would be willing to print up flyers on KD in a format appropriate for your community. Use the San Diego English-Spanish flyer as a model. Next, mobilize a group of parent volunteers to distribute the flyers. Consider distributing flyers just prior to "peak" KD season, usually Jan.-April in many communities. Suggestions for distribution include:....
a) Counter of local pharmacy where you wait for your prescriptions. Most pharmacists are happy to have a stack of flyers available for customers.....
b) High-end children’s clothing stores: Gymboree, Baby Gap, etc.....
c) Contact local school board and ask if flyer can be included with the new student packet that is distributed to families of prospective kindergartners during the summer....
d) Pediatrician or family practitioner office waiting rooms. Parents are happy to have something to read during the long waits. This has the added advantage of increasing physician awareness about the disease.....
e) Day care or child care centers....
f) Teen parent programs through the school system....
2) Contact your local TV station and ask if they would do an educational spot on KD. It helps to have a KD expert in your community. Offer to have you and your family interviewed about KD and your child’s illness. TV stations can actually show photographs directly from the UCSD website to illustrate the features of KD.....
3) Design a catchy educational poster about KD that could be posted on community bulletin boards in churches, schools, businesses. Include the KD Foundation website where people can go for more information.....
4) Become trained as a lay community health worker and give lectures to local groups such as school nurses, teachers, service clubs, church groups, high school students as part of their health curriculum.....
----------------------------------------------------------------------------------------------------------------------....
Add 3 new ideas to this list and e-mail to ..jcburns@ucsd.edu... I will make sure your ideas are posted on our website.....
.. ..
1)....
.. ..
.. ..
2)....
.. ..
.. ..
3)....
Fever may not be a necessary diagnostic criterion for Kawasaki disease
A 3-month-old boy admitted to Cincinnati Children’s Hospital Medical Centerwith all of the classic symptoms of Kawasaki disease except fever experienced multiple coronary aneurysms, according to a published case report — emphasizing the difficulty of diagnosing the disease in infants.
Remittent, high fever has been among the most consistently manifested symptoms of the disorder since the first case reports in the 1960s. “Existing guidelines consider the presence of fever for at least five days a requirement for the diagnosis of classic and incomplete Kawasaki disease, and the description of Kawasaki disease without fever is virtually nonexistent in the published data,” the researchers wrote.
Despite the presence of nonexudiative bilateral conjunctivitis; erythematous lips and tongue; rash; and prominent cervical lymphadenopathy, physicians delayed administration of IV immunoglobulin and aspirin therapy due to normal axillary temperatures around 36·C.
An IV Ig dose of 2 g/kg along with 80 mg/kg of oral aspirin daily was initiated after echocardiograms revealed aneurysms of the proximal right, the distal left anterior descending and circumflex coronary arteries. The patient’s left coronary system normalized, and his right coronary artery diameter reduced from 7 mm (z score=19) to 3 mm (z score=3.1) after a second dose of IV Ig was administered and long-term initiation of low-dose aspirin and warfarin (Coumadin, Bristol-Myers Squibb).
Warfarin was discontinued nine months after the initial presentation, and the patient continues to grow and develop 2.5 years later.
“It is unclear why our patient did not develop a fever typical of Kawasaki disease,” the researchers wrote. “We speculate that a decreased ability to mount a fever response may be present in some young infants, further contributing to the difficulty to diagnose Kawasaki disease in this age group.”
Hinze CH. Pediatr Infect Dis J. 2009;28:927-928.
PERSPECTIVE
Young infants with Kawasaki disease are very frequently difficult to diagnose because their manifestations of the illness are often quite subtle and can be fleeting. It is highly unusual for fever to be completely absent, but this gives us an opportunity to contrast the Japanese and the U.S. criteria for the diagnosis of Kawasaki disease.
The U.S. criteria require five days of fever and the presence of at least four of the five classic features (rash, oral changes, extremity changes, eye findings and cervical adenopathy). The Japanese criteria, on the other hand, require five of six classic features, with fever being one of the six rather than a separate requirement. Therefore, in Japan a small but finite fraction of children diagnosed with Kawasaki disease lack fever but meet the other five criteria.
The young infants with a few but not all the features of Kawasaki disease remain highly challenging, and this group can be at the highest risk for development of coronary aneurysms among all Kawasaki disease patients if not treated with IV Ig. I believe that liberal assessment of inflammation markers (erythrocyte sedimentation rate and/or C-reactive protein) in patients in whom there is reasonable suspicion of Kawasaki disease can provide an important clue to the diagnosis, as they are very often markedly elevated at least by the fourth or fifth day of illness to levels substantially higher than those expected in children with acute viral illnesses or drug reactions.
– Stanford T. Shulman, MD
Infectious Diseases in Children Editorial Board
A 3-month-old boy admitted to Cincinnati Children’s Hospital Medical Centerwith all of the classic symptoms of Kawasaki disease except fever experienced multiple coronary aneurysms, according to a published case report — emphasizing the difficulty of diagnosing the disease in infants.
Remittent, high fever has been among the most consistently manifested symptoms of the disorder since the first case reports in the 1960s. “Existing guidelines consider the presence of fever for at least five days a requirement for the diagnosis of classic and incomplete Kawasaki disease, and the description of Kawasaki disease without fever is virtually nonexistent in the published data,” the researchers wrote.
Despite the presence of nonexudiative bilateral conjunctivitis; erythematous lips and tongue; rash; and prominent cervical lymphadenopathy, physicians delayed administration of IV immunoglobulin and aspirin therapy due to normal axillary temperatures around 36·C.
An IV Ig dose of 2 g/kg along with 80 mg/kg of oral aspirin daily was initiated after echocardiograms revealed aneurysms of the proximal right, the distal left anterior descending and circumflex coronary arteries. The patient’s left coronary system normalized, and his right coronary artery diameter reduced from 7 mm (z score=19) to 3 mm (z score=3.1) after a second dose of IV Ig was administered and long-term initiation of low-dose aspirin and warfarin (Coumadin, Bristol-Myers Squibb).
Warfarin was discontinued nine months after the initial presentation, and the patient continues to grow and develop 2.5 years later.
“It is unclear why our patient did not develop a fever typical of Kawasaki disease,” the researchers wrote. “We speculate that a decreased ability to mount a fever response may be present in some young infants, further contributing to the difficulty to diagnose Kawasaki disease in this age group.”
Hinze CH. Pediatr Infect Dis J. 2009;28:927-928.
PERSPECTIVE
Young infants with Kawasaki disease are very frequently difficult to diagnose because their manifestations of the illness are often quite subtle and can be fleeting. It is highly unusual for fever to be completely absent, but this gives us an opportunity to contrast the Japanese and the U.S. criteria for the diagnosis of Kawasaki disease.
The U.S. criteria require five days of fever and the presence of at least four of the five classic features (rash, oral changes, extremity changes, eye findings and cervical adenopathy). The Japanese criteria, on the other hand, require five of six classic features, with fever being one of the six rather than a separate requirement. Therefore, in Japan a small but finite fraction of children diagnosed with Kawasaki disease lack fever but meet the other five criteria.
The young infants with a few but not all the features of Kawasaki disease remain highly challenging, and this group can be at the highest risk for development of coronary aneurysms among all Kawasaki disease patients if not treated with IV Ig. I believe that liberal assessment of inflammation markers (erythrocyte sedimentation rate and/or C-reactive protein) in patients in whom there is reasonable suspicion of Kawasaki disease can provide an important clue to the diagnosis, as they are very often markedly elevated at least by the fourth or fifth day of illness to levels substantially higher than those expected in children with acute viral illnesses or drug reactions.
– Stanford T. Shulman, MD
Infectious Diseases in Children Editorial Board
Investigators: What if It’s Not the Flu-Kawasaki Disease
MINNEAPOLIS - The H1N1 flu is everywhere. But are health care providers jumping the gun when diagnosing it? The FOX 9 Investigators profile the case of a little girl who's facing a lifetime of medical issues because, at first, everyone thought she had the flu.
Amira has a smile that will melt your heart. But for weeks the smile went away because she was miserably sick. Was she another victim of H1N1? By the time that question got answered the damage was done.
Amira’s mother knew something wasn’t right because her daughter was so fussy. “I thought maybe it was the flu."
Besides being hot to the touch her mother says parts of Amira's body had actually turned red. "You can look at her and tell like something wasn't right."
Miera Horton was worried it might be H1N1 which is hitting some young children especially hard. So she says she took Amira to the emergency room at Children's Hospital in Minneapolis.
Horton said, “She did have a fever at the time, it was like 102, so they told me to give her Tylenol every four hours and watch and the fever should go away in a few days."
Horton says the fever didn't go away. In fact three days after that visit to the ER she says Amira was burning up, her temperature was now a 105 degrees. She says they went back to Children's Hospital.
Horton said, “Her throat was really, really red, her eyes was really red, her mouth, her whole mouth was red so they swabbed her throat for a strep test."
Horton says the strep test was negative as was a test for a urinary infection. She says the doctor thought it was probably a seasonal flu and put Amira on a prescription of Tamiflu to treat it.
"They said follow up in the pediatric clinic within three to four days," said Horton.
Three days later, they were back at Children's clinic for the follow up. Horton says her daughter still had that strange redness all over.
“She was just so inflamed, her hands and her feet and her mouth, her lips were really, really cracked and bleeding."
On this visit, according to Horton, another doctor figured Amira was not suffering from the regular flu, but the H1N1 variety.
“They said it should run its course within 10 to 14 days." She said.
Several days passed, and Horton says Amira was even more miserable. She still had that redness and didn't want anyone touching her hands or feet.
“We would put her down so she could run around as soon as her feet would hit the floor she would just scream." Horton said.
Once again, Amira was taken back to Children’s, her fourth visit in over two weeks. This time there was a new diagnosis. It wasn’t H1N1 but something called Kawasaki disease, which if not caught within the first ten days, can cause permanent heart damage.
Horton said, “If you're a parent and you go in with a lot of symptoms and they tell you H1N1 don’t just accept that.”
Amira spent a week in the hospital. She was treated with blood thinners and other medications to bring down swelling in her coronary arteries which supply blood to the heart muscle.
"It can go back down but there will be scar tissue forever and that scar tissue can cause blood clots which could go to her heart and give her a heart attack, so she’ll pretty much be on blood thinners for the rest of her life." Horton said.
Horton gave the hospital permission to discuss Amira's case with the FOX 9 Investigators but a spokesman for Children's sent us an e-mail saying "We are not comfortable making comments specific to this patient even though the mother has approved."
Childrens’ went on to say it could only supply this statement:"If your child has flu-like symptoms it’s important to stay vigilant and to call your doctor if symptoms persist. These can be signs of a secondary infection or a different illness altogether."
Horton said, “It makes me very upset that it could have been diagnosed sooner.”
Kawasaki disease is rare. About 20 kids a year in Minnesota come down with it. No one knows what causes it but experts say it’s important to get treated within ten days after the high fevers begin.
Steve Swanson is a pediatrician with HCMC. He said, “In that time period if you can act and treat, you can reduce significantly the risk of any long term damage to the heart.”
Swanson says in its early stages Kawasaki might be confused with the flu.
“Although as time progresses there should be symptoms and physical findings in a child with Kawasaki disease that are very unique from the flu.”
Those symptoms include inflammation and redness around the mouth, hands or feet. Horton says those were the same symptoms Amira had each time she took her to Children's. “She’s weak and really doesn’t want to walk,” Horton said.
A week after being released from the hospital Amira was doing much better but her prognosis for the future is still uncertain.
Could her illness have been diagnosed earlier?
Without access to her medical records or the doctors who treated her one can only speculate. But with so much attention being given to the H1N1 flu, Dr. Swanson says
health professionals
have to be careful not to get tunnel vision.
“When you’ve seen six or seven people in your clinic who all have influenza like illness, the next person who comes in with fever and sore throat, you may falsely assume that this is influenza when in fact it may be something else.”
It may take a year before doctors know the true extent of damage to Amira's heart. Her family wants other parents to learn from their experience. If your child has flu-like symptoms, like a high fever or trouble breathing, it could mean something else is wrong. Call your doctor.
MINNEAPOLIS - The H1N1 flu is everywhere. But are health care providers jumping the gun when diagnosing it? The FOX 9 Investigators profile the case of a little girl who's facing a lifetime of medical issues because, at first, everyone thought she had the flu.
Amira has a smile that will melt your heart. But for weeks the smile went away because she was miserably sick. Was she another victim of H1N1? By the time that question got answered the damage was done.
Amira’s mother knew something wasn’t right because her daughter was so fussy. “I thought maybe it was the flu."
Besides being hot to the touch her mother says parts of Amira's body had actually turned red. "You can look at her and tell like something wasn't right."
Miera Horton was worried it might be H1N1 which is hitting some young children especially hard. So she says she took Amira to the emergency room at Children's Hospital in Minneapolis.
Horton said, “She did have a fever at the time, it was like 102, so they told me to give her Tylenol every four hours and watch and the fever should go away in a few days."
Horton says the fever didn't go away. In fact three days after that visit to the ER she says Amira was burning up, her temperature was now a 105 degrees. She says they went back to Children's Hospital.
Horton said, “Her throat was really, really red, her eyes was really red, her mouth, her whole mouth was red so they swabbed her throat for a strep test."
Horton says the strep test was negative as was a test for a urinary infection. She says the doctor thought it was probably a seasonal flu and put Amira on a prescription of Tamiflu to treat it.
"They said follow up in the pediatric clinic within three to four days," said Horton.
Three days later, they were back at Children's clinic for the follow up. Horton says her daughter still had that strange redness all over.
“She was just so inflamed, her hands and her feet and her mouth, her lips were really, really cracked and bleeding."
On this visit, according to Horton, another doctor figured Amira was not suffering from the regular flu, but the H1N1 variety.
“They said it should run its course within 10 to 14 days." She said.
Several days passed, and Horton says Amira was even more miserable. She still had that redness and didn't want anyone touching her hands or feet.
“We would put her down so she could run around as soon as her feet would hit the floor she would just scream." Horton said.
Once again, Amira was taken back to Children’s, her fourth visit in over two weeks. This time there was a new diagnosis. It wasn’t H1N1 but something called Kawasaki disease, which if not caught within the first ten days, can cause permanent heart damage.
Horton said, “If you're a parent and you go in with a lot of symptoms and they tell you H1N1 don’t just accept that.”
Amira spent a week in the hospital. She was treated with blood thinners and other medications to bring down swelling in her coronary arteries which supply blood to the heart muscle.
"It can go back down but there will be scar tissue forever and that scar tissue can cause blood clots which could go to her heart and give her a heart attack, so she’ll pretty much be on blood thinners for the rest of her life." Horton said.
Horton gave the hospital permission to discuss Amira's case with the FOX 9 Investigators but a spokesman for Children's sent us an e-mail saying "We are not comfortable making comments specific to this patient even though the mother has approved."
Childrens’ went on to say it could only supply this statement:"If your child has flu-like symptoms it’s important to stay vigilant and to call your doctor if symptoms persist. These can be signs of a secondary infection or a different illness altogether."
Horton said, “It makes me very upset that it could have been diagnosed sooner.”
Kawasaki disease is rare. About 20 kids a year in Minnesota come down with it. No one knows what causes it but experts say it’s important to get treated within ten days after the high fevers begin.
Steve Swanson is a pediatrician with HCMC. He said, “In that time period if you can act and treat, you can reduce significantly the risk of any long term damage to the heart.”
Swanson says in its early stages Kawasaki might be confused with the flu.
“Although as time progresses there should be symptoms and physical findings in a child with Kawasaki disease that are very unique from the flu.”
Those symptoms include inflammation and redness around the mouth, hands or feet. Horton says those were the same symptoms Amira had each time she took her to Children's. “She’s weak and really doesn’t want to walk,” Horton said.
A week after being released from the hospital Amira was doing much better but her prognosis for the future is still uncertain.
Could her illness have been diagnosed earlier?
Without access to her medical records or the doctors who treated her one can only speculate. But with so much attention being given to the H1N1 flu, Dr. Swanson says
health professionals
have to be careful not to get tunnel vision.
“When you’ve seen six or seven people in your clinic who all have influenza like illness, the next person who comes in with fever and sore throat, you may falsely assume that this is influenza when in fact it may be something else.”
It may take a year before doctors know the true extent of damage to Amira's heart. Her family wants other parents to learn from their experience. If your child has flu-like symptoms, like a high fever or trouble breathing, it could mean something else is wrong. Call your doctor.
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