Normal life?

General discussion regarding Kawasaki disease
kris00
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Normal life?

Post by kris00 » Mon Sep 13, 2010 11:38 am

What are the chances do KD kids have to ever have a long healthy life post KD? It seems there are more problems that develop over time. Are there any post KD kids who where treated and have had dialation of the arteries that have never had heart issues later in life?

heather4570
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Re: Normal life?

Post by heather4570 » Mon Sep 13, 2010 12:07 pm

That's a great question Kris, one on my mind every day. My daughter was 18 months when dx and treated for KD and I constantly worry. I think the reality is that MOST people do go on to live completely normal, healthy lives after this disease goes away, especially when treated within the 10 day window. It seems most likely that the stories being posted on this forum regarding long term problems are the unfortunate exceptions to this. Try not to assume the worst, have faith that your child will be perfectly fine, and make sure to have follow ups with cardiology at least every 3-5 years even if there was no known cardiac involvement. Just an opinion from another KD Mom!!
Heather

beth27
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Re: Normal life?

Post by beth27 » Mon Sep 13, 2010 6:51 pm

I worry about this too. We are very fortunate that our daugther has had a good recovery with no major cardiac involvement at this time. I hope it continues to go that way. I think as mothers we just tend to worry more. I am worse now after our daugther having KD. She goes back to her cardiologist in a couple of weeks. If all goes well and everything looks good I think she will be aspirin free! That is such a blessing, but I can't lie -- it scares me as well. I am just so worried and afraid something could still happen. I understand your concerns and I wish I had some advice, but our daughter has not met the two month window for KD just yet, so I am not much help. Good luck to all of you and best wishes!

Beth

KCLP
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Re: Normal life?

Post by KCLP » Mon Sep 13, 2010 9:09 pm

kris00,

Heather4570 is right! Most children recover from KD, completely. As is advised - follow the AHA recomendations, follow-up with a pediatric cardialogist with KD knowledge, every 3-5 years. If you notice any changes in your childs health or behavior, consult your pediatrician. Always follow your instincts. No one knows your child better than you!

Has you sons color returned to normal? Is he still under the care of the cardialogist at children's?

As a mother, I advise to enjoy today, learn from yesterday, educate yourself and your child for tomorrow.

KCLP
Last edited by KCLP on Wed Mar 26, 2014 5:26 pm, edited 1 time in total.

Momcat
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Re: Normal life?

Post by Momcat » Mon Sep 13, 2010 9:32 pm

Well, it has been proven that KD kids without visible problems, with dilations and with aneurysms all have abnormal linings in the coronary arteries. Current research is showing that some long term KD patients are having some myocardial fibrosis (aneurysms or not). I don't think anyone truly knows what will happen with each individual child. HOWEVER, most kids go on to lead normal lives, and I would say that our child who has giant aneurysms leads a fairly normal life for the time being and might continue to. She is in a high risk group for long term problems, but even some with aneurysms go years and years without stenosis or blockages.

KD doesn't have a ton of long term research because it really hasn't been studied that long. Keep an eye on the research that comes from Kawasaki Disease specialists and compare what any parent says to that.

It's a tricky question. We've known children that have died from no apparent visible damage and others who survive well with vast amounts of visible damage. Any parent who has a child with KD will always worry.....but you do have to live for today and not obsess or it will take control and you will find yourself thinking EVERYTHING wrong with your child is related to KD and fear can eat you alive.

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MikesMom
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Re: Normal life?

Post by MikesMom » Tue Sep 14, 2010 6:21 pm

I second Momcat, my son also has giant ansyeursms and yes unfortunately required by-pass surgery and will be closely followed for life BUT otherwise he lives a fairly normal life. He does suffer with some extra bleeding issues but that is not due to the KD it is more to do with the meds to treat the post KD heart complications. He was dx back in 1996 and other than going for every 6 month checks ups for 12 years we just went with that flow and it became routine, at the 12 yr mark he required surgery and for the past three yrs we have been back in the every 6 month check up flow. Even now after the surgery to look at him you would never know or believe his heart was so damaged, he is not a sickly child or does he allow the heart complications to change him. He is your dipacle teenage boy, playing videos, biking, texting, going out with friends, etc... he just was never able to play contact sports but otherwise is the same as all his friend and can keep up with what they are capable of doing.

As time passes what ever the post KD effects for child deals with, you will learn to live with it and you will slow down on the "worried mom", that is so completely normally after the initial dx of KD, don't be hard on yourself for worrying we all go through that and eventually your over worrying subsides and you will learn to deal with what you have too and stop worrying about all the unknowns. The KD research is really taking off the last few years, years ago I was not able to get much information, the more research the more technology will catch up. I alway remember back when my son was 4 years old, at that time due to the placement of his anyseurms they did not believe surgery would ever be an option, but his cardioligist said "he has age on his side, research and technology improves all the time, who knows what will be available when the time comes" He was sure right, 8 yrs later they operated!

Think 10 more years from now how much more will they understand KD, just like 10 years ago they did not know half they now know.
Have faith, age is on their sides.
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

friendindixie
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Re: Normal life?

Post by friendindixie » Tue Jan 11, 2011 9:47 am

Hello,
My husband of 10 years is 26 years post KD. He had bypass using both internal mammary arteries in 1989. He has since been on no limitations. He takes a 81 mg aspirin daily. He owns and operates his own construction business. He enjoys water sports, four wheeling, hiking. We just went snow sledding yesterday. He does not smoke. He takes omega fish oil supplements. Bc he will not touch fish. We have a 2 year old son. A dog and two cats. He gets checkups on his heart. The grafts are holding up well. He is lucky bc he has had youth on his side. No high cholesterol or high blood pressure. We have been to Hawaii, Tahiti, Carribean, Bahamas & traveled to many states. We love going to the Smokey Mountains. So, really it doesn't get more normal than that. I'm very thankful to have him in my life. We have been blessed. I wish you all many blessings.

JustBreathe
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Re: Normal life?

Post by JustBreathe » Thu Jan 13, 2011 8:07 pm

Hi All, New here but Im going to paste my 'story' here because it fits in with what I think is Normal Life.... :

I'm new here but felt this over whelming sense of emotion in me, finding this forum, finding this page and the foundation...I just had to write something..

I was diagnosed with Kawaski Disease in 1990/1991, I was about 3 years old, we had just moved to London from Canada, we were told I had caught a very rare disease, I was sent to a childrens hospital I spent many months there, I remember a few scenes in the hospital but I didn't really know what was going on, pipes going in/out of my nose..I remember waking up at night and seeing the nurses telling the other kids stories, but I was stuck in bed, I was quite confused..my mom would sleep over at the hospital and look after me, years later I learned I had Kawaski Disease and among other symptoms had kidney and liver failure, the doctor told my mother to prepare for a funeral.....

Thanks to God and to the work and efforts of Tomisaku Kawasaki, I am now 23 thank God and have lived to tell the tale :') If there is anything id like to put across most, its that the doctor isnt always right. The doctor had given and couldnt see much hope, but with prayer, patience, faith and positive environments and positive thinking...change does often happen.. This is something that I always refer to in my day to day life, that I cannot forget that the doctor had told my mother to prepare for a funeral, that it was so bad to the point of a system collapse. Please, for the sake of other children, please never lose faith and never lose hope, no matter how bad it gets...just hold out..

Thank you.

I notice many have the natural worry about whether someone with Kawaski Disease who makes it out lives to have a normal life, God willing May all children make it out. Honestly I view life a lot different to many of my other friends I had growing up, a different out look and different attitude, I stayed away from smoking and drinking, even during the teenage 'peer pressure' years. I thought if God had given someone the blessing of saving a life, I could never be so cruel as to abuse my body, people respect you more because of it.
Thanks to God, I am a healthy 23 year old Female, I love to stay fit, go to the gym, I hope to be an architect, ive completed my Bachlors and Im about to start my Masters Degree in Architecture this Fall, I love to travel and do the regular things that you'd expect. Thankfully I havent had any real illnesses after that, I had chicken pox like normal kids, I was in hospital for a short amount of time in '98 because of Bronchitus but that was about it from what I can remember....

I pray that you and your families and children recover from KD and I hope it stays away from all of us. Please know that its not a cliche, that patients DO end up coming out of this stronger. You are all in my prayers..

*I am allergic to Erythromycin, a form of penicillin, I have had to remember this over the years, incase I was ever given antibiotics...I think they discovered this while I was in hospital.

*I was also advised not to have the MMR 'jab' 'injection' and to this date have not had the vaccination, something particular that the doctor advised, I assume specific to my case but he was sceptical about the combination injection and that it could cause a reaction...

Kelsie
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Re: Normal life?

Post by Kelsie » Tue Mar 22, 2011 12:05 am

Hi!! :)
I was diagnosed with KD when I was 2months old. Upon a follow up check up I was then diagnosed with coronary aneurysms. I am now 21 yrs old and have a giant and large aneurysm. I have lead a perfectly normal life with the occasional check ups every 6months(echos/stress test/heart caths) to make sure everything is functioning properly. I am currently on a coumadin and asprin regimen. I was able to do basically anything a normal kid would do growing up. I played sports under close supervision due to being on coumadin. When I was 8yrs old I was hospitalized for about a week due to elevated INR levels. I had bleeding in my joints but after physical therapy I was back to my normal self. Other then that I haven't had any major problems. I am currently going to college to be a Nurse and will graduate at the end of this summer.
I'm sure it is very easy to get dicouraged when your child is experiencing KD. It is important to keep faith and believe in the Lord that he will take of everything. I was told that a by-pass surgery is likely in my future. I exercise and eat healthy which will hopefully prolong my need for that. I don't let that discourage me or hinder me from living my life to the fullest. This past weekend I told my story at the American Heart Associations annual ball. It is so important that we raise awarness not only about KD but heart disease in general. It is my hope that we one day find a cause for this terrible disease.
God Bless!!

angelsamongus
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Re: Normal life?

Post by angelsamongus » Tue Mar 22, 2011 9:41 am

*I was also advised not to have the MMR 'jab' 'injection' and to this date have not had the vaccination, something particular that the doctor advised, I assume specific to my case but he was sceptical about the combination injection and that it could cause a reaction...[/quote]


my daughter just got the mmr vaccination one month to the day of her getting sick?????? im new here and
i know that kd is very scary and i honestly can't stop crying

blessings to you and your family

Nancy
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Re: Normal life?

Post by Nancy » Tue Mar 22, 2011 11:46 am

hi

It is NOT risk of "reaction" that is a concern with the MMR immunization after Kawasaki Disease !

It is simply that after IVIG, an appropriate immune response to live vaccines may not occur.

The two LIVE vaccines are the MMR and Varicella (chickenpox)

It is fine to have a child receive other vaccines after KD without waiting.

An 11 month wait period is recommended for LIVE vaccines only

http://www.childrensmemorial.org/depts/ ... tment.aspx

hope this helps,
nancy

angelsamongus
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Re: Normal life?

Post by angelsamongus » Wed Mar 23, 2011 10:43 am

thank you for clarifying that

laset02
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Re: Normal life?

Post by laset02 » Mon Jun 27, 2011 7:06 pm

I had Kawasaki disease when I was four years old. THis was back in 1984. Back then, I was one of the first 100 diagnosed cases in the United States, and there was not much know as far as treatment. There was no treatment with IVIG, I was treated with Aspirin therapy only. I spent one week in the hospital, couldn't walk (Doc's thought I originally had Juvenille rhuematoid arthritis) but was sent home eventually. I had minor cardiac involvement. I had one enlarged coronary artery that over the next two or three years shrunk down to normal size again. I had to see a cardiologist yearly until I was 14 years old and get echo's very frequently. I also had a heart murmur that I grew out of.

Throughout all of my childhood and teenage years I played soccer, ran competitively in races and in Middle school and high school was a star athlete. I never had any issues. Today I am 31 years old and completely healthy. My last echo was 4 years ago, and I only had to get that because I had passed out at work and the Doc's were trying to rule out cardiac arrhythmias. My echo was completely normal. I do plan on seeing a cardiologist soon just because it has been so long since I have seen one.

I just wanted to share my story to let all worried mom's and dad's out there know that your child CAN live normal healthy lives like me. At least now you have current research and diagnostics on your side. In 1984 I went almost three weeks with an "unexplained viral illness"-- my pediatrician had no idea what was going on. I am getting married in a few months and plan on having a child very soon after that as well.

I wish all your kids health! :D

tomjoesammom
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Re: Normal life?

Post by tomjoesammom » Tue Jul 05, 2011 6:58 pm

beth27 wrote:...... but our daughter has not met the two month window for KD just yet, so I am not much help.

Can you explain the "two month window"? Thanks so much!

springtime7
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Re: Normal life?

Post by springtime7 » Sun Jul 17, 2011 11:29 pm

Most kids go have very normal lives after KD (after recovery period). I posted the story of my nephew who had a bad case 8 years ago and did not get treatment until late and had heart involvement and was on aspirin therapy for over a year and he had a murmur. His healed and he is now a healthy, very active 11 year old who plays a lot of competitive sports. I wish I could say the that all cases turned out like that but as you have seen on this board there are kids who have more long term concerns. From what I understand the majority who receipt prompt treatment do not have long term sequela.

In general - complicated cases and recent cases are are most represented on boards like this because those are generally the people seeking help/guidance and the people with help/guidance to give. This is an invaluable resource and I pray often for the families on this board who are still struggling with complications from KD so I do not want to sound like I am glossing over their struggles.

I will also say the first month or so after leaving the hospital is very challenging and you do wonder if you will get past it. My daughter was not back to her full self for at least a month - we had the luxury/gift of her being able to recover at home at her own pace. Some parents have to go back to daycare or school right away and I would guess (guess is keyword) that it takes longer to fully recover. As someone else said much depends on the amount and severity of heart involvement. But there is light at the end of the tunnel. And someone posted a picture and story of their beautiful teenage daughter who had major heart involvement is a bubbly, happy, normal teenager - so even with major heart involvement there is much hope.

Hope things are going well.

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