Sarah Chalke: My Son Had Kawasaki Disease

03/28/2013 at 06:00 PM ET

Sarah Chalke Grey's Anatomy Kawasaki Disease
Trae Patton/NBC/NBC/Getty

She’s suited up in Scrubs before but for her return to the emergency room, Sarah Chalke will be channeling her off-screen experiences — specifically, an episode involving her son Charlie Rhodes.

The mom was thrown into the real-life medical realm when, a little over a year after welcoming her first child with fiancé Jamie Afifi, the couple realized something was terribly wrong with their baby boy.

“You present with all these symptoms, you get a lot of repeated misdiagnoses, you keep getting sent home [by doctors],” Chalke, 36, tells TVLine.

For 10 days Chalke spent time online researching her son’s medical mystery — until she found a site complete with a checklist of many of Charlie’s symptoms.

The diagnosis? Kawasaki disease, an illness that causes inflammation in a child’s blood vessels.

However, with the treatment plan window only open for approximately 10 days — those who don’t receive it have a one in four chance of developing heart disease — Chalke was determined to find a doctor willing to treat her sick son.

“We fought really hard to see a specialist, but got the treatment on day 10½,” she says. “It was on the late side, but thank God Charlie is okay.”

Once the family recovered from the serious scare, Chalke began seeking out ways to educate parents on the perils of the disease, including participating in a PSA that will air at the end of one of the most public platforms possible: a guest appearance on Grey’s Anatomy.

Airing Thursday, the actress will portray a mother who fights for a diagnosis for her child suffering from Kawasaki disease. Reliving her experience on set hit close to home for Chalke, who shares scenes with fellow mom Ellen Pompeo.

“As an actor, you’re usually like, ‘Will I be able to cry when I’m supposed to cry?’ But this is more like, ‘Will I be able to stop crying when I have to stop crying?'” Chalke shares.

“I didn’t know what that experience was going to be like, to hold a baby that was made up to look like [now 3-year-old] Charlie did at that time.”

Calling it “the most challenging thing” she’s ever done, Chalke admits the final outcome was “a really good experience,” and is hopeful her time spent onscreen will save lives.

“The Kawasaki doctor we dealt with said they do a news story every year, and often that saves lives,” she explains. “She said that this [Grey’s Anatomy] episode absolutely is going to save lives. It’s going to save some kids.”

— Anya Leon

FILED UNDER: News , Parenting

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Showing 91 comments

aleshamom4 on

God Bless her, her family, Grey’s for doing this..awareness, awareness, that helps so much!!

scorpionglow on

Making people aware of this is so important. Just hearing about it terrifies me.

Shayna on

I had this disease when I was 10. Had to see an infectious disease specialist (think House) and got treated right before it killed me. It’s rare and people still don’t know what causes it, but it’s scary for sure.

Melissa on

My son had it twice! Which only happens to 3% of people in the world… He has enlarged coronary arteries because of it….. Very scary disease!

Magnolia on

House is billed as working in Diagnostic medicine, which would’ve worked faster, Infectious Disease is just that, diseases from infection… Incredibly happy that doc you went to see was paying attention though!!

Marcia on

I loved her on Scrubs. Glad her son is better.

Miriam Poulsen on

It scares me when parents have to find a diagnosis for their own children. That is what doctors are meant to do.

Jen on

My daughter had this at 11 months old…SO SCARY!! I am SO thankful for a doctor who caught her symptoms in time and she is now a happy and healthy 9 yr old. 🙂

Anonymous on

My son developed it at 5 weeks old! We checked into the hospital on Christmas eve and spent the next 5 days waiting for the doctor to figure out what was wrong with my infant son. Finally, an intern came up with the diagnosis of Kawasaki and I watched him get better as he received the treatment.

We are about to go in for our 3 year check up to make sure he is completely healed. My son will never remember this, and I will never forget it – the most terrifying week of my life.

Annoymous on

Our son had this when he was 4 months old. Spent over a week in the hospital until they could figure out what he had. Wasnt until they gave him the hemogloban transfusion that they were confident that thats what it was.

By far the worst and scariest week of my life as a mother. So glad they are doing this episode to raise awareness.

justme on

i have a friend whose son had kawasaki disease, and its a scary, scary thing that they are constantly on the lookout and and managing his health..thank goodness for awareness in this episode.

Nichole on

My little brother had was diagnosed with Kawasaki disease at six years old. For months I watched my parents take him for blood work because the doctors couldnt figure out what was wrong with him. He kept getting sicker and sicker. Finally, after an echo cardiagram and tons of blood work it came back as Kawasaki’s. Hopefully, thanks to this episode, there will be more awareness on this disease so other children can be diagnosed and treated sooner.

Diane on

My daughter was only 2 years old when we discovered she Kawasaki disease. It took a lot of doctor visits before our doctor consulted another doctor who had just read an article on Kawasaki disease. My daughter was admitted to the hospital in isolation because they did not have a lot of information on this disease. Once the diagnosis was made we caught it on the last window day to give the medicine before she could be left with permanent damage.

My daughter is now 23 years old healthy is a swimmer, runner and a police officer. We still have her checked out every so often. And after all these years never got the answer we wanted of how she contracted this disease but one thing I do have is my daughter. This was a life changing moment for me and my family and one that we have never forgotten.

I can only say thank you to all the doctors and medical staff who took care of my daughter way back when because I have had the privilege to watch my beautiful daughter grow to become this wonderful young woman who lives a very active life. And finally starting to hear more about Kawasaki disease I can only hope more people become of aware of this disease so that the children can get the care that is needed.

andycastro on

My son had kawasaki disease at 5 mths old. I had the same issues 9 days of being misdiagnosed and 104.7 temp. It was horrible but my son was cleared and is now a healthy 5 year old. Thank you for for sharing parents need to be aware because many people including doctors dont know about Kawasaki.

elizabeth on

My 7 yr old just got out of hospital with kawasakis. Day 7 before diagnosis.

SJ on

I too had Kawasaki’s Disease as a child, back in 1991, and survived. I’m glad there’s so much research and help out there for parents to be able to advocate for their children now. Back then, we thanked the diligence of my pediatrician to go with her instincts and do the appropriate treatment.

shannon williams on

I just wanted to say, I am glad your son was okay. I just watched the episode on Greys anatomy.

My second child which is a girl was diagnosed with kawaski disease at the age of 2. I didn’t know what to do. She was treated on the 10th day of finding out she had it. The doctors only had a few hours to find the right treatment. My daughter seemed to be getting worse right in front of our eyes. I was very scared. They finally found the right treatment and she got better and is now 21 yrs old. Imagine if I didn’t stay on the doctors to keep looking and let them send me home. My daughter may not be here today or she could be a very sick person today. I thank God everyday for saving her life.

kelly koster on

I had kawisaki disease when I was 7 – I am now 40. I was ill for 10 weeks with a fever. They finally figured out what it was. Yes I got echos every year till I was an adult and they said it was not needed anymore. I turned 29 and started to have heart issues. As of right now I have had 3 open heart surgeries, double bypass. and I have 9 stents in my heart. I have also had tacosubo.

At this point I can not do much of anything due to I get short of breath very fast followed by chest pain. They said I will probably have this the rest of my life. I have 5 kids and can not play with them like we used to and it kills me inside. I pray someday they can figure out how to fix this and that doctors are more aware of what to look for.

Also where it comes from I was one out of 5 siblings that got it and we all pretty much did all the same stuff.

chavon on

I had Kawasaki as a young child back in 1989 I survived it but I’m having heart problems. I did get some kind of heart disease that I’m suffering from now but I’m a survivor so I’m hanging in there. Keep your positiveness and your faith and everything will be ok.

k on

my son had KD two weeks before his first birthday. he had recurring fever, rashes, strep, and was also dehydrated. two doctors misdiagnosed him twice (one with ear infection & one with the flu). following my gut intuition i took him to a third doctor who finally diagnosed him. he was admitted for ten days and was put on Aspirin therapy for over a year. he is now ten years old and thankfully very healthy with no indication of KD.

i believe we should all follow our intuition especially when it comes to our family. let’s do research and be advocates for ourselves and our loved ones so we get the best care possible.

lisa on

On a Happy note: My son was diagnosed with this at the age of 2. Very scary to be sent home with a sick child(only once) The Doctors of Children’s Hospital in Pittsburgh, PA. knew the disease within 4 days. He is now almost 19 and thriving at the University of Pittsburgh. I continue to have him checked for any side effects and yes I know if its caught in time no side effects wont appear But I still have my boy checked.

Grey’s did an awesome job. So how many of you all can relate it to knew carpet or carpet cleaners?

Anonymous on

My son had this when he was 7 years old! Scary! I still get a little concerned if it is going to cause problems down the road for him, he is now 11. His medical doctors never did catch it, our dermatologist did.

He only had the rash left and I had him to that doctor for an unrelated issue and he discovered it and I took him back over to the medical doctor then they had use go to Riley, in Indianapolis, Indiana. After that 10 days, his hands started peeling big pieces of skin off.

With three echos behind him, everything has looked good! Thank God!! It is scary.

So happy for you and you little one!

krissy on

Any mom who has a child who is sick will certainly relate to her. After reading the comments, this disease sounds very scary. I have never heard of it before so indeed, it has raised awareness already. God Bless all parents who have to go through scary times like this with their precious children. 🙂

Laura on

My son had it when he was 5 years old. He was also diagnosed with strep throat by urgent care. After 3 days and no change, I took him to his pediatrician who immediately knew that he had Kawasaki’s. Thank goodness she knew exactly what he had! He was admitted to the hospital that night and was so much better by the next day! I had heard that carpet cleaner could be the cause of it, but that wasn’t my case.

Glad that Grey’s Anatomy aired it!!

Alison on

My seven year old daughter became sick on a Friday and was diagnosed by a physician who had never seen her before who was in for her regular Ped. He sent us to a Children’s Hospital that night with the suspicion of KD. They admitted her and tested her with specialists from ID and Cardio, etc. In Wednesday even though she didn’t have the swollen glands, she had enough of the other symptoms so Wednesday that week (day 5/6 from day of *known* fever). They started her on IVIG and her fever was so stubborn. Literally just before the 36 hour limit her fever broke.

I prayed and prayed for this child and God heard my prayers. Another 36 hours later, though exhausted and weak, they released her from the hospital into our care. He peeling began but who cares…baby girl was home! She cont’d on the high dose aspirin therapy which is so scary to do as a parent after all the warnings of Reyes Syndrome. She had repeated ECHO’s and was followed by pediatric cardiologist. She was finally cleared as healthy…no resulting damage to her heart. I remember when he said, “Now go and run and play!” I almost cried in relief.

God bless all of you that have suffered with this disease. Seattle Children’s Hospital is doing some genetic testing to see why some respond to treatment and others don’t. We participated to help because we are so grateful for those who went before us to spare our child. I pray God will bring an end to this through his gift if knowledge to medical doctors and researchers. Nothing is impossible with God!!

Carolyn on

My son had Kawasaki’s when he was 1 1/2 yrs old in 1996. He was diagnosed on day 4, and is now a healthy 18 yr old. He continues to have follow up visits and participate in studies. It’s important that kids who were affected are followed as young adults because the inflammation during the acute phase can cause scarring of the blood vessels of the heart. This can take years to develop. The UCSD website has a lot of great info on studies and follow up. One of their awesome doctors, Dr Jane Burns, has followed my son through the years.

Alison on

One more thing…if you have any suspicion just go to a Children’s Hospital. Do NOT mess around with your child’s health and the time you need to have on your side. Pediatric specialists just see this more often…it’s like the disease carpool lane. Regular ped’s just don’t see it often. The Ped that saw my daughter said it was the first true case in THIRTY years if his practice! Never risk being wrong at a doctor’s office…always risk being wrong at a Children’s Hospital! It’s worth it!!

Laila on

that’s why she did so well…the subject was near to her heart.

Ivy. on

I think Sarah would be proud to read all of these posts. I’d never heard of this disease and I’m researching it as I type. It sounds terrifying for everyone involved and I’m thankful to see how many cases have been caught and treated.

Linda on

Thank you Sarah and Greys for doing this. I hope it saves a lot of lives. Thank God your little boy is healthy now.

dmarie217 on

I had this when I was 6 years old…it started with me spiking extremely high fevers (103-104). My mother was a bit of a hypochondriac (thank God, this time) so she took me to my pediatrician twice (everyone around her said to calm down as children run fevers)…finally, my doctor told me to stick out my tongue ( I had “strawberry tongue”, very indicative of Kawasaki).. immediately he told his receptionist to call the hospital and have me admitted.

I was treated by dr who specialized in Allergies and Infectious disease.I had Immunoglobulin via for about 5 days in the hospital. The cause was due to dust-mites and dust (my parents had new carpeting put in and the dust from underneath the old carpet infected my blood stream). The recovery was extensive…no gym, no cheering, no dancing, basically all physical activity was forbidden. The disease puts you at risk for heart aneurysms so I had EKG after EKG for months after.

I am 28 and perfectly healthy now, but its imperative to take preventative measures as having this disease can put you at risk for other diseases and health problems later in life.

Kellie on

I had a similar experience with my daughter. We were living in Germany at the time. We kept taking her to the Dr, but kept getting told it was viral. We called in to the Army hospital and was advised to take her to the local German child’s hospital. She was diagnosed with Kawasaki yet for 5 days they did nothing. We tanked her out and took her to Landstuhl regional Army medical. She began treatment on day 10. She is now going on 19 and in great health!

LOL! on

Watching it right now. She’s a great actor but in this role she was giving something extra, now I know why.

Doctors, moms (and dads) know their children, we know when there’s something really wrong. You may have the education, but we have the instinct. God Bless her and her family.

Marilyn on

Sarah did such a wonderful job portraying a young mother fighting for her child’s life. Mothers have to stand up for their children, to be their voice when they don’t have them. My children are 28 and 31 and they have their own children now. I have had many a disagreement with their pediatricians when they were very young only to be proved correct. Now it’s my turn to encourage my children, my grand children’s parents, to follow their instincts and stand up for their children with their doctors when the situation warrants it. Thanks for reinforcing the message with such a heartwarming and beautiful performance.

Milissa on

My daughter also had it when she was 4. She was originally diagnosed incorrectly and it took our persistence when she didnt get better to get the correct diagnosis. She is now a healthy 15 yr old who is very active in sports..I worry all the time when I read more and more articles and research showing greater chance of heart disease for kawasakis patients..

iowagirl on

For those of you reading I am 37 and had Kawasaki disease in 1979. I have lived without having any heart issues and look forward to continuing life without any effects from this illness.

kaemicha on

Sarah Chalke did an outstanding job on Grey’s tonight. Maybe that was due to the fact that she’s experienced the same thing with her son. It was a very special story line.

Anonymous on

My daughter had this disease at 5 1/2 years of age. She was repeatedly misdiagnosed by our pediatrician, a walk-in clinic and a hospital. My husband and I knew there was something wrong with her and we finally took her to The Hospital for Sick Children in Toronto. This wonderful hospital saved our daughter and she is now 21.

Erica on

I knew someone whose son had this as a baby. It obviously terrified his mother and did delay his development a bit. But he eventually caught-up and is now a healthy little boy.

It is so good that Sarah is getting the word out as it could save a lot of lives.

nat on

Isn’t this the disease that Jed Travolta had as a child that caused him to have seizures, one of which killed him when he fell?

Norma J Diehl on

I am so sorry your baby and you went through this illness. God blessed your baby with a diagnoses in time. Thank you for sharing your experience with us. I think you have saved lives with your story. God is SO good. Love and blessings to your family.

Kate on

Thanks for sharing your story and spreading the message to others. God bless!

MollyF on

I missed this episode will have to check Hulu later. Sarah is such a great actress (loved her on Scrubs). So glad her son is doing well.

Soraya on

My daughter had it when she was 2.5 years old. I went through a similar experience of being sent home because its just a flu, or a virus etc. Parent s have to be their child’s advocate, thankfully I found someone who listened and she is now a beautiful healthy 21 year old.

Noneya on

Wonderful performance! And what a great way to get the message out to people! God Bless you Sarah and your family! And thank you Grey’s for airing this most important episode!!

Debs on

Watched the episode last night, was breathtaking.

God Bless Sarah and her little Charles, so happy everything turned out well for them.

Reyna Tillery on

I can totally relate to this story line. I lived it.

Kelly on

I’m so glad she did this episode and I cried the whole time!

My son had this when he was 3. Luckily, on day 2 of symptoms, his doctors were telling me about Kawasaki disease and telling me what to watch for. He was admitted 2 days later and started on IVIG on Day 4. It took 2 rounds but he is doing great now.

I applaud her for speaking out about this.

Kimberly on

I’m certainly glad Internet diagnosis worked in her favor in this instance, but she is perpetuating a nightmare for healthcare providers. If a person is seeking diagnosis by Internet they are often going to find one whether the condition or illness is present or not. It happens countless times day after day after day, tying up ambulance, bogging down EC’s and urgent care centers. People self diagnosing anything from bubonic plague to schizophrenia. It is a relief to know that some people have the capability of researching illness on the Internet responsibly. The Internet has created a generation of hypochondriacs. If you look for something to be wrong with you, you will find something if you look long enough. Like I said, it worked in her favor and for that I am thankful, but at the same time she’s encouraging unhealthy behavior.

Jody on

My son was diagnosed with Kawasaki when he was 7 months old, we were told it was a ear infection because if the high fever, the only other sympton he had was high platelet count. He didnt have the swollen tounge, hands and feet, rash , or red eyes, A doctor at a childrens clinic where we were at fought tooth and nail that is what he had and she was right. After treatment and a week hopsital stay my son is very healthy but very lucky…. This is a disease that is not talked about much and I had no clue what it was, I am glad that shows are getting it more into the public for knowledge.

Yalpe Nismooh on

Good thing the disease’s treatable.

I never heard of it until now. Learn every day, right?

Amanda on

My son was diagnosed with KD at 10 months of age, and spent 6 days in the hospital. It was a terrifying experience, sitting a watching your child suffer and in so much pain, and not being able to do anything to make him better.

I am thankful for Sarah, and to Grey’s and People, for getting the word out about Kawasaki Disease. The window for treatment is so small (10 days), the complications are numerous, and many people have never heard of it. Now, because of this, thousands, if not millions, have heard about the disease and doing their own research. They will learn the symptoms and push for treatment before it is too late for their babies.

Rachel on

I had Kawasaki when I was three in the ’80’s. My earliest memories are of being in the hospital. My mom, aunt, and grandma are all nurses and they were stumped as to what I had. Thankfully a doctor had seen the disease before at the hospital and I was diagnosed within a few days of the onset. I had echos for about 10 years after when my heart was given a clean bill of health. I’m 26 now and have no heart problems! I was always able to ride a bike, play soccer, and run around. The only thing I noticed was that my immune system is weak. Sometimes I wonder if that is from the treatment. Its interesting to see so many other people who have had it as well. In all my time I’ve never met another person who has had it.

Amber on

Wondering if any of you reacting to this story can recall an over consumption of soy products at any point in your lives or your child whomever had KD?

My daughter 5yrs old came down with this last month. I cried throughout last nights entire episode… It was as if I was reliving the nightmare that we still have not woken up from.. All over again from the start.

Sarah played that role PERFECTLY because it was so dear to her heart.. I know as many of us know exactly what she felt… Scared.. Helpless.. But deep down SOMETHING was just NOT a normal ‘virus’ for our kids.

We’re still dealing with the after effects from KD today.. Each day we see some improvement… But some days are harder then others. It’s a long recovery process… I’m looking forwards to when this roller coaster of a ride were on with our daughter will end and KD will be permanently out of our lives… BUT while we were in the hospital my home town news station did a blurb on KD stating some researchers are linking KD to an over consumption of soy products.

Of course hearing this brought me to my knees in horror.. Because when I was pregnant with my daughter I assumed drinking soy was the best way to get my child the most healthy protein since I struggle with a minor dairy allergy… I consumed at least 20oz’s a day.. And now with the way we extend the life and flavor of our food most all no fresh produce has some sort of soy filler in it.. Granola bars.. Fruit snacks.. Yogurt shakes.. Seems everywhere I turn soy bi-product is in something were consuming.

I’m just curious if anyone who’s dealt with KD can recall of soy was a major part of their or their child’s life who was effected with KD? There has to be a cause for this disease! More research needs to be done… As much as I support cancer and diabetes research.. My days of supporting those diseases are over.. It’s these unexplainables ill be working to help fund.. As I wouldn’t wish this nightmare we’ve experienced on my worst enemy!

Thank you Sarah for bringing this disease to light.. It will most assuredly bring this disease to light and help save lives and hearts 🙂 you touched my heart last night that’s for sure.

beth on

I had kawasaki disease when I was 6 years old (1995). My mom took me to see 4 different doctors before someone believed I had more than just the flu for 9 days. My family lived in a SUPER small town. Luckily the last doctor I saw was a pediatrician and only knew what I had because his nephew had it. After being really sick in the hospital for a few weeks, follow up bloodwork for a few months and heart ultrasounds every 5 years until I was 15, I am a normal 24 year old!

Charlotte on

last nights Grey’s was truly some of the best acting I’ve seen from Sarah Chalke! Such a powerful episode — and I was so happy when Meredith didn’t turn her away and double checked the lab results. Scary stuff — glad they’re addressing real life issues on the show, cause sometimes it can get a bit over the top. Also so glad that Sarah’s son is okay!

Jessicad on

Sarah did a wonderful job last night and looked so gorgeous! I’m glad her son is doing well and she’s getting the word out!

Karen Doucet on

My son while we were on vacation also had Kawasaki disease 17 years ago, as an infectious disease nurse I recognized his symptoms having seem 3 cases, unfortunately the doctors had no idea about what I was talking about and refused the treatment of IV immunogloblins and instead treated with antibiotics for severe scarlet fever…..long story shortened my son went into heart failure ,with and enlarged “boot shaped” heart with a long recovery because we missed the window of opportunity to administer the proper treatment. Thankful that he survived!

Concerned Mom on

My son was 2 1/2 at the time he was diagnosed with Kawasaki. The doctors at Miami Children’s caught it on day 4, continued follow up tests through teenage year. He is now 20, in college and pursuing medical degree. The care was excellent and so grateful it was caught before any permanent damage. Still monitoring for any problems. Only pray a more children are taken care of the way he was.

Angie on

Wow! There are a lot of comments coming from people with experience with KD. It’s wonderful that so far, every one that I’ve read, all of the children are healthy and some grown!

My daughter had RSV when she was 2 months old, her O2 level when we got to the emergency room was only 40%, they transferred her by ambulance to another hospital with a children’s unit and she stayed for 6 days.! That was definitely a very scary time for me but she is now 11 and a healthy, happy young lady.. While it wasn’t KD, I can still sympathize. It seems it’s maybe not as rare as they say. I hope that doctors start paying more attention to the symptoms so no child has to suffer longer than necessary again.

Great job to the mothers that fought for their children!

Nita Whaley on

Thank you so much for bringing this disease to my attention. I had never heard of it until I watched Greys Anatomy. They did a wonderful thing bringing awareness to this! You are a wonderful Mom and thank God you listened to your gut instincts! So happy that your son is healthy! God Bless You!

Grace2 on

Oh how scary. I am so glad he’a ok.

We just went through worrying about Kawasaki with my 3-year-old. The reason it takes so long to diagnose is bc it’s generally not Kawasaki, so most docs wait until a child has fever for 3-5 days to start looking for other things. Our doc did a bunch of tests in hopes of ruling it out before we had to do an echocardiogram. Thankfully, the fever finally went away (day 7 or 8) and so we were spared.

Good for her for educating people. She’s fortunate to have a platform to do so.

And as a parent, always listen to your gut.

Anonymous on

My son got this disease at 9months old. I was in and out of emergencies for 3 days. I went to see my sons doctor but he was out of town. I’m thinking that was a good thing because the doctor relieving him phoned childrens hospital up right away and told them to admit my son. I’m greatful for her because no one else would listen. My son had red spots all over his body and he also had croup at the time so they said it was croup and send me home. Well he was admitted to childrens and stayed there for 6 days. He did peel and his private was so raw and from over peeling. To this day I think he is still one of the highest count for his blood cells. I’m lucky we caught it in time and that I made sure someone listened to me. My son is a handsome 25yr old and I still worry about him each day and god willing he makes it to at least 100yrs old.

Yasminda on

Wonderful for her to bring this illness to the limelight and use this opportunity to educate and inform the public. Wish more celebrities did projects like this one.

pstirlingfox on

Our 6 year old son was just diagnosed tonight with Kawasaki. He has his appendix removed 6 days ago after suffering abdominal pain and fever for a day.

Our primary care nurse mentioned Kawasaki to me after seeing Grey’s on Thursday. And yesterday he developed all the classic symptoms of red eyes, rash, sores on tongue, swollen feet. We have just begun treatment tonight.

I so appreciate the increased awarenss as it may have saved my son future heart damage.

Jennifer Jekubik on

My daughter was diagnose with Kawasaki disease when she was 4. It was the most horrible thing I have ever had to deal with. When you know something is wrong with your child and you go to the doctor, then they send you home and tell you to call in 2 days if she doesn’t get better. My heart goes out to her and her son.

Michelle E. on

I’m glad this is bringing more awareness of this disease. My daughter was diagnosed with Kawasaki’s disease at 15 months. This episode brought back all those memories. She had a fever of 104 for 7 days. After taking her to have doctors, ER and urgent care (total of 5 visits in 7 days) she was finally diagnosed, admitted to the hospital and treated. It was the scariest 2 weeks of my life. She is okay now thankfully!

Carol on

My son had this at the age of 6. I spent a week taking him back and forth to the doctor because of a high fever. Nothing would help the fever to break. Frustrated, I called my brother, who is a doctor in Iowa, and told him my son’s symptoms. Over then phone, my brother diagnosed him and told me to get him to the nearest hospital with a pediatric cardiologist. We spent a week in Phoenix Children’s Hospital. This disease presents some very specific symptoms: high fever for more than three days, very red eyes, a strawberry-looking tongue, and peeling hands and feet. I hope that more shows help to spread the word by informing parents what to look for. I will be taking my son, now 13, in for what I hope will be his last echocardiogram next week!

DD on

My grandson was on vacation in Houston and got Kawasaki disease at two. Thankfully the doctors in Houston recognized it instantly and he is fine. That was 10 yrs ago. When we tell people he had Kawasaki disease most people don’t know what we are talking about so Grey’s Anatomy and shows that make the public aware are essential. It could save a childs life. All of the doctors have told us that if not caught in time it could be deadly.

Robyn on

Thank you Sarah for bringing awareness to KD. In 2002, when my son was almost 3 years old, he came down with this serious, rare and often diagnosed childhood disease. After being misdiagnosed with Strep twice, I took to the Internet to try and find out what was wrong. He had a fever that would not respond to medicine, a rash on his diaper area, red eyes and swollen joints. He vomited anything he ate and cried even when he was sleeping. My usually happy-go-lucky, active toddler was listless and cried when I moved him.

I had only been my son’s Foster Mom for 6 weeks (and a first time, single parent), but I knew in my gut that SOMETHING was terribly wrong.

I googled his symptoms and came up with two possibilities. One of them was KD.

I rushed him to Children’s Hospital in Los Angeles after his pediatrician rudely told me I was wrong, but if I thought he had KD, I should take him to CHLA. Thankfully I did.

As we were waiting to see an intern, my son developed every symptom of this disease before my very eyes (swollen hands and feet with peeling skin, a rash on his stomach, and a tongue that looked like a strawberry). The intern came in and I showed him printouts from the Internet. He paged Dr. Wilbert Mason, an infectious disease doctor who just happens to be this country’s foremost authority on KD. Dr. Mason came in and examined m son. The doctor confirmed that he had KD and after hearing my story, he told me that I probably just saved my son’s life.

Dr. Mason explained that, after day 7 (Grey’s says 10), children can experience permanent heart damage and even die from KD. Luckily, my son was diagnosed on day 5 and was immediately treated with IVIG. He recovered fully.

Dr. Mason included me in his rounds the next day and had me explain to his interns how I diagnosed my son and about his misdiagnosis.

I am grateful to Dr. Mason and the staff of CHLA for believing in my gut feeling when his (former) pediatrician and the ER docs at Glendale Memorial heart hospital would not.

Again, believe in the message that Grey’s and Sarah Chalke are trying to convey – learn about KD and always trust your gut feelings!

Lisa Graham on

Hearing Sarah tell her story on The Talk tv show today brought me back to my sons experience w/Kawasaki diisease. He had it in 1997 at the age of 2(actually spent his 3rd bday in the hospital) Our dr at the time was very uneducated and kept telling me it was just the flu,however as a mom you just know when its something besides a simple flu. He had all the classis sxs she spoke about by the time I got him to the ER for the 2nd time he was very sick. Thankfully the 2nd ER dr listened to me and admitted him. That set everything in motion to get a diagnosis by a fabulous specialist (Dr Landon you ROCK!) and was able to get treatment.

At that time the internet wasnt as popula or contain the info it does now so I had never heard of it nor could we just Google it and find out info or connect w/other parents. Soon after though John Travolta was on GMA sharing his sons story which was comforting to sort of “connect” in a way with another parent and hear about the symptoms his son had who was the same age then. As we learned 3 is the most common age although maybe thats not true anymore?? John did talk about his wifes research into causes and mentioned foam carpet shampoos and/or ocean water can somehow cause it though I cant recall how or why. I do know we had been spending every day at a local kids beach leading up to him getting sick and we had been using foam carpet shampoos many times as I didnt have a carpet machine at that time.

Nonetheless, he isis perfectly healthy as a robust smart amazing 18 yr old and had testing that showed no heart damage. Thankfully, considering how long he was misdiagnosed and how sick he was at the time of diagnosis. I still remember the “strawberry tongue”, peeling red swollen feet and hands. I still have the memory of my son wanting choc milk and no sooner would the nurse bring it and we would give it to him that he would vomit it all back up. Then he would ask for more which we would and the vomiting would happen. It was sad and funny to hear him say ‘yes’ when I would ask him if he wanted more. LOL

So thank you Sarah for sharing your sons story to get the word out and it did remind me again how lucky we are that considering how little info was known when my son was diagnosed, he is ok! Sending lots of thanks to God for His protection and provision during that time!

Annie on

The hospital here in Lewiston says they usually see one case here a year. Symptoms started out in our case as if he was getting strep throat.  Sore throat and fever. Over the next two days his fever rose and Tylenol did nothing to lower it. By the night of day 3 he developed a rash behind his ears, facial palsy, listless, strawberry tongue, sore throat, blood shot eyes, and continued high fever, ER sent him home still thinking it was strep throat but requesting a follow up with his Dr.  It was day 4 when his Dr put all of his symptoms together which also included a rash in hos groin area and red and swollen feet and hands, and took it very serious by making the diagnosis of Kawasaki Disease and admitted him to the hospital to start the ivig.  He spent 3 days in the hospital and so far has no long term affects from this disease.  Thanks to his Doctors quick diagnosis 🙂 he will have echocardiograms and blood work done throughout the next year or so.   He also has peeling of his hands and feet around his nails which in his case came about a week after.  

Brenda Christenson on

My son was diagnosed at 8 mod. old Very frightening disease and very frustrating to get a diagnosis. We went through the same 10 days of waiting and alternate diagnoses. Luckily, we had a pediatrician who recognized the signs and monitored the situation carefully and chose appropriate treatment. Thank You for the publicity and awareness of this rare but devastating disease!

Lisa Graham on

After sharing some of my sons story on here and reading the various stories it occured to me that either doctors are not aware of this awful disease or maybe there just needs to be more awareness out there for both parents and drs. My sons diagnosis was way back in 1997 and I had never heard of Kawasaki but that also was a time that the internet didnt have has much knfo as it does now. I remember his dr printing me out some info from the medical text, which wasnt much. The scary part then as it still seems to be a major problem is the consistent cases where kids get very sick fairly quickly, the parent knowing its not just a flu/virus and the drs sending kid home w/some justification. Im sure many cases drs are not doing it intentionally,in our case the dr wouldnt accept what I was saying and I had to go above him to get help.
I hope as time goes on the diagnosis time frame is sooner and that a general awareness is created so that people don wonder how it is that a kid gets as my son use to say “Motorcycle disease” LOL

Jasmine richards on

Thirty two years ago when my son was almost two he was admitted to the hospital with a rash and high fever. Our pediatrician could not diagnose, after a spinal tap and many test, a young intern who had been at Shands teaching hospital UF, finally said “it looks like something I recently read about in a medical journal”. Thank God, in those days no one had heard of Kawasaki’s disease, certainly not the chief of Peds. At the hospital. I do remember that young doctor in my prayers, he saved my son

platon20 on

OK, I need to clear up some stuff here.

1. Kawasaki’s is not fatal most of the time. Yes it is possible to die from it if you get a large coronary aneurysm but only a small percentage of people get bad aneurysms.

2. Gray’s anatomy is a show about surgeons. Surgeons wouldnt know how to diagnose or treat Kawasaki’s even if the patient told them they had it. It is treated w/ IV medicine in a hospital. There is no surgical treatment for it.

3. Chalke is wrong when she says you only have 10 days to diagnose it or you are going to die. Coronary aneurysms take up to 6 weeks to develop following the initial fevers. Of course it is better to diagnose it ASAP but to go around telling people you’ll die in 10 days is a load of crap.

4. Kids w/ Kawasakis do well most of the time. Yes, they have to stay in a hospital for 48-72 hours, but that is ONLY because the IVIG medicine cant be given in pill form. Some infectious disease clinics will give IVIG in their clinic so you dont actually have to enter the hospital.

MP on

Our then-3-year-old presented signs of Kawasaki Disease. Although he did not have all 5 symptoms, he did have 3 of the 5. We thank God everyday for his pediatrician who’s quick thinking sent us straight to the hospital. Our now 5-year-old is in the clear.

We had no idea about this disease until our son had it. I applaud Ms. Chalke for using her celebrity to make people more aware of this disease.

Anonymous on

UC San Diego is currently researching Kawasaki’s Syndrome and it is becoming more well known. It was widely acknowledged back in 1990 through news articles because I thought my son had it. It is not a new virus that attacks toddlers so I am surprised by this article.

Surfmama on

I wanted to respond, because I felt that this poster presented misinformation, and Kawasaki Disease can be a very serious condition. I don’t feel that it should be downplayed.
platon20 wrote:
“1. Kawasaki’s is not fatal most of the time” – correct, but can shorten the lifespan significantly and the quality of life.

“2. Gray’s anatomy is a show about surgeons.” – Oftentime surgeons are also experts in their specific specialties (heart surgeons would likely know, as they have probably had to repair damage done afterwards). They are not likely to be the ones to diagnose the disease.

“3. Chalke is wrong when she says you only have 10 days to diagnose it or you are going to die. Coronary aneurysms take up to 6 weeks to develop following the initial fevers. Of course it is better to diagnose it ASAP but to go around telling people you’ll die in 10 days is a load of crap.”
– I don’t believe that she stated that you have 10 days or you die. You have 10 days and then after that it is treated less successfully. Treatment that starts within the first 10 days decreases the risk of dying at some point later in your life, earlier than you might have otherwise due to damage done to the heart and vessels during the course of this disease. The longer the inflammation is allowed to course through the body, the greater the chances of permanent damage.

“4. Kids w/ Kawasakis do well most of the time. Yes, they have to stay in a hospital for 48-72 hours, but that is ONLY because the IVIG medicine cant be given in pill form. Some infectious disease clinics will give IVIG in their clinic so you dont actually have to enter the hospital.” – They are at risk for other conditions that may need to be managed in the hospital (acute fevers that could lead to seizures, heart issues) that occur with KD. In the first few days, they can be in critical states due to a later diagnosis.

Lastly, I would like to say, that please, trust your instincts. Be aware of the symptoms. The most predominant beginning symptoms are the strawberry tongue… google pictures, it looks like a strawberry; high fever; rash (spotty); red palms, red soles of the feet. Not all children have them all. If a doctor gives you an answer you don’t like, go to another one. They are human, they make mistakes (even if they try to act otherwise). This applies to all of your care, and that of your loved ones. You are the best advocate.

debi glynn on

My daughter, who is now 35 years old, was diagnosed with Kawasaki syndrome when she was 2 years old. It was MISDIAGNOSED (as it commonly is) as Scarlet fever. My own reading led me to a new york newspaper article that read “Kawasaki hits NY”. There, out of the 14 listed symptoms, she had about 10 or so, was my answer. I contacted Dr. William Rader out of Los Angeles who was doing some Kawasaki research back them. We communicated by mail for a while. There was ONE pediatrician who was able to see a 20 lb 2 year old back then. I’m sure the info has changed, but the rest has not. She appears healthy now though she had a seizure as a child and again after childbirth. We are continuously aware of her heart though with any event she has. You never forget..Good luck. Debi Glynn

Vernice Roberts on

My son had this disease when he was three years old. This was the first time I had heard of it. It took them so long to get the correct diagnosis. They told me at first that he just had a throat infection.

Kim on

My nephew was diagnosed with Kawasaki’s when he was five years old. His pediatricians office referred him to a specialist quickly when they realized this may be something serious that they could not diagnose and thank God the specialist was not too proud to admit that they were in over their head and sent my nephew by ambulance to another specialist at a hospital over an hour away who was able to correctly diagnose him within the ten day window. The day before he was diagnosed I happened to see an episode of ‘Mystery diagnosis’ which featured a case of Kawasaki disease – which I had never heard of but recognized all of the symptoms my nephew was experiencing – I called my brother to tell him about the episode and he said that the doctor had just brought up the possibility of Kawasaki to them, and he was diagnosed with it within the day. So yes… Awareness, awareness is the key to a faster, lifesaving diagnosis.

jojo on

My son who is 7 years old was just diagnosed with kd. He started his treatment on day five with the IVIG. It was within 24 that my son began to look a lot better. He did have most of the systems of high fever that would not go down with motrin. One thing I do remember him complaining about was pain in his neck about two days before the fever. I thing it was his lymphoid starting to prepare for battle. We did take him to a urgent care, but they told us it was a viral infection. Then we took him to a pediatrician and he told us the same thing on Friday. By this time he had a enlarged lymphoma, high fever, red eyes, chills, and the rash all over his body. On Saturday we took him to the children’s hospital. It was on Sunday they give him the treatment for KD which took about twelve hours to finish. I think the Dr thought at one point it could be toxic shock syndrome, but once he received the treatment and took it well they knew it was kd. By Tuesday his rash was going away and his eyes where white again. They discharged him out of hospital once he finished high dose aspirin treatment on Thursday. Today April 27th 2013, my son is taking low dose aspirin every twelve he’s and is getting better. He is walking around like a old man due to joint pains. We have had to give him Tylenol for the pain. Up next are echo at one month and blood test next week with infection diease Dr. We are still not out of the woods, but it is a blessing to have him with us. From reading all the postings it has help to see his future can be a normal one. As for me and my wife we will are going to work on spreading the awareness.

gwen on

My son had this disease at 2 1/2 years old. All of you are soo right, about the scariest thing I have ever had to see or deal with. Thank the Lord his pediatrician mentioned he could possibly have this. After his visit, he developed more symptoms and I took him to childrens hospital. I told them what I thought and after at first dismissing me, they admitted him. He had the IVIG, which took a full 24 hours, and was immediately better. No lasting problems, he is a healthy 8 year old now. Thank you Jesus!

Josh on

I was diagnosed with Kawasaki disease when I was 6. Back in 1994 on Luke air force base there wasn’t any talk of it so I went undiagnosed for 13 days thankfully one doctor went in the complete opposite direction and made the diagnosis for Kawasaki. I will say that it is a very scary and hurtful experience and I’m sorry to hear of anyone else having it celebrity or not. I have led a relatively normal life (besides asthma) and after a few years of active duty behind me I have had no issues because of this disease… However it has come to my attention from my new doc that I should be getting an echocardiogram ( I believe that’s how its spelled) apparently people with Kawasaki disease have a higher risk for heart problems depending on how you respond In the acute phase. BC my diagnosis was so late I’m at a higher risk for heart related problem ( do to coma and severe fever of 105 for days) Ijust want this to nbe a more common topic not just for when people get this disease but as a preventative measure or help with earlier diagnosis.

venkatesh lanka on

you guys.. sarah and grey are awesome for doing this,thank god i think it saves a lot of lives.. i hope your son to recover soon

Amanda on

This story sounds so familiar. My nephew had Kawasaki a few years ago. He got it shortly after his 7th birthday, which put him out of the usual ‘under 5’ range. My sister had to take him to multiple doctors before he got a proper diagnosis. I still remember going to the hospital and seeing the way his hands were peeling – it was so strange! Fortunately he’s 9 years old now and doing a lot better.

Kate on

My son was diagonized with this 34 years ago. At the time it took them a very long time and days to figure out what was wrong. He almost died. he is now 37 and a Pediatrician. Seattle Children’s hospital took such good care of him and our family.

Anonymous on

If it wasn’t for that episode of greys I would have probably lost my son, he came down with Kawasaki when he was 15 months old, 1 week after that episode aired. the doctors were at a complet loss for they had no clue what it could be until I mentioned Kawasaki, they ruled it out right away as he was one symptom short to confirm it. His eyes were swollen so much he was basicly blind, therefor they could not see if he had the red eyes. We were on day 5 already. I remember breaking down at this point bagging the doctor to treat him for it, I couldn’t sit and wait another 4 days for this last test to come back (and probably negative ) they agreed and treated him. By the next morning he started to open his eyes and he wanted food. I can’t even begin to explain what when through me when that happened. I knew there more to worrie about and he wasn’t out of the clear yet, but I just knew he was going to be alive and hopefully ok, which he is, had a bit of a scare with his heart after words but he is ok know. He is a happy 3 1/2 year old and so full of love. She was right when she said this episode is going to save lives, it will save kids. She was right, she saved my little boy and I will forever be greatful for her and that episode. Thank you so so much.

Diane.T on

I just want to say that because of that episode of greys, my son is a happy and healthy 3 year old boy. He got Kawasaki about a week after this episode aired. The doctors were at a complet lost and I remembered seeing this episode. He had most of they symptoms but his eyes were so swollen he was practically blind. They ended up treating him for it as there is no blood test to confirm it. Not to mention I practically bagged them to. By the next morning he started to open his eyes and he wanted to eat (first time in 5days) Sarah said that this episode will save lives , it will save kids and I just want her to know that it saved my little boy. We had a close call with his heart afterwards but he is ok now. If it wasn’t for that episode I would hate to think what would have happened 😦 So thank you so much Sarah!

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