Tell me your lasting affects from KD

General discussion regarding Kawasaki disease
Lenna
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Re: Tell me your lasting affects from KD

Post by Lenna » Sun Feb 12, 2012 5:03 pm

My son was diagnosed with KD at the age of 9 in 1999. For a long time we thought that KD hadn't left him with any long term effects. He has had lots of joint issues and tore his shoulder labrum when he was 13, but we never connected that to KD. But when he was 15, he developed Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a disorder of the autonomic nervous system, and basically the blood doesn't circulate properly because the blood vessels don't operate properly. His symptoms were/are dizziness, nausea, headaches, brain fog, and lots of fatigue. His cardiologist insists that there is no connection between KD and POTS, but please...two bizarre illness in a six year span that affect blood vessels, and there is no connection??!! We have been to many doctors and tried many treatments over the past 4-1/2 years. My son has been somewhat better for the past year because we understand a little bit more about where along the chain his autonomic nervous system is breaking down and have been able to finally put him on some helpful medications. But he still isn't great... There is so much more that the doctors don't understand about POTS and I feel that the key to my son's case might lie in its connection to Kawasaki's Disease.

Josephine
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Re: Tell me your lasting affects from KD

Post by Josephine » Mon Feb 20, 2012 12:32 am

Hi!
My son was diagnosed with KD when he was 5 years old; he is now turning turning 9. He was treated on day 6 with gammaglobulin and high dose aspirin. He had an echocardiogram and ECG before he was discharged that were normal. He was finally diagnosed with "uncomplicated KD". He had most of the symptoms of the disease except for the peeling of the fingers (that I can recall as that period was a blurr). He had a follow-up echocardiogram after one year and that showed to be normal. I get his blood checked yearly and it is the same - low iron. He has always been healthy - getting the least sick of my three children.

To this day - he continues to complain about joint pains - in his knees and legs. He says he is always cold, especially when he is tired. In the morning, the lights or the sun continue to bother his eyes. He seems quite tempermental, but I am not sure if that is KD related or just his temperment; however, he does get into these "states" where he becomes so stubborn - I know to just let him be and get himself out of his mood.

Last week he went for his blood work and the doctor said that he had a faint heart murmur. He also said not to worry about it. But in light of the fact that my son had KD, I wanted an echocardiogram done. The doctor said that the last two echocardiograms showed nothing and that this was probably nothing to worry about. His blood work came back OK with the continual low count for iron. Actually, his iron level increased.

My son is energetic and does well academically. I do know that when he feels tired and doesn't want to do anything - I let him be. He has never complained, but I can recognize that when he is active, such as playing hockey, he needs food and to rest to maintain his strength and energy.

Thinking back, he has complained about his stomach, but I never thought anything of it. I thought he might be hungry or needed to go to the washroom.

I'm a little worried about his echocardiogram and the fact that he has a heart murmur. I assumed that because he had a full recovery, he is active and otherwise healthy - we were able to put the KD behind us. There have been no symptoms to cause me to be worried. Since his appointment, I have found this site and realize that KD never goes away. Maybe the stomach ache isn't that he's hungry, the joint pain isn't that he is growing, the chills aren't because he is tired, and his moodiness isn't heriditary. The heart murmur - reminded me that KD will always be a part of his life and the long term effects and possible consequences or complications of the disease are "unknown". There is no "clear sailing", and this cannot be "put behind us".

My anxiety is the fact that we live in Canada and it seems that KD, where I live anyways (Northwestern Ontario) seems to lack in knowledge and understanding of the disease. My local doctors have been wonderful in the sense that they are trying to educate themselves and provide me with the best care and reassurance by performing satisfactory tests. However, I feel helpless.

At first, I was really nervous about the heart murmur, but realized that although it "may be nothing to worry about", that just means we got lucky this time. My son's health is nothing for me to take lightly and that it is very important to stay focused on getting yearly check-ups and documenting anything that makes him feel "different", no matter how mild of a stomach ache he may have.

jteath
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Re: Tell me your lasting affects from KD

Post by jteath » Mon Feb 27, 2012 9:56 pm

My son is 7 years old and was diagnosed with Kawasaki and in the hospital for 5 days. He didn't have any heart problems. He suffers with a lot of knee pain but the worst problem is lower abdomen pain. He gets sharp pains in the Right abdomen that go around to his back.
He has been getting checked for many things and everything comes back normal. When the pain comes he is doubled over.
He takes a medication to coat the lining of his stomach it takes the edge off but its always there.
His mood has definitely changed since Kawasaki. He Gets mad and upsets very easy. He is very hyper and gets tired very easy. I would like to see more specialist around who deal with Kawasaki. We see several different specialist but I feel they don't see a relation to Kawasaki. I feel they are related and should be treated by one Dr who can help with the healing and diagnosising of this disease.He was diagnosised last August. He also tends to get very bad headaches. They become so bad that he will stop what he is doing and go to bad. When he gets overly tired or starts to get sick he starts to get a rash and his eyes get blood shot. He is definitely a different little boy since getting this disease. After getting treated with Kawasaki the pediatricians don't think any of these problems are related. As a mother you know your child and I feel they are mostly all related. I hope you are able to find common situations so new information can be studied for this disease that affects so many. It would be nice to have pediatricians to understand how everything is related and have a better understanding on how to help us cope. Good luck.

mamibbw
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Re: Tell me your lasting affects from KD

Post by mamibbw » Mon Apr 02, 2012 7:31 am

I may be a paranoid mother but my 3 yr old son was diagnosed with kd 3-19-12 and had the ivig treatment. We have been home and seemed ok for a few days. But now he has this nasty wet cough and says his tummy hurts. He is also very sleepy lately. His temp has been about normal the highest it has gotten has been 100.0 f even....Should I be worried or just let it play out. Please someone let me know.

Natasha McBride
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Re: Tell me your lasting affects from KD

Post by Natasha McBride » Mon Apr 02, 2012 8:51 am

Both my daughters had KD in late January 2012, at the same time. One daughter is 5 and the other is 8. Ever since my 8 year old complains of severe hip joint pain. Sometimes so bad she can't walk, others she just limps with discomfort. My little one has been given puffers and finds it hard to breathe with a high level of exercise, which is unusual for her. She competes in gymnastics and plays soccer and never had these issues before hand. I'm very concered for the both of them. The KD was caught on day 5 and they were given the IMG in the hospital and then were on an asprin treatment for 5 weeks following.

Thanks for your efforts.

Natasha

Natasha McBride
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Re: Tell me your lasting affects from KD

Post by Natasha McBride » Mon Apr 02, 2012 12:24 pm

Dear mamibbw,

My immediate thoughts are go see a doctor. A few weeks after my children's KD episode my eldest daughter got a fever, just out of the blue. Of course I panicked, and took her to see our doctor. It turned out to be nothing, but it gave me piece of mind. My doctor told me it's normal to be paranoid, and that my kids will get sick again, but now I do know what symptoms to be looking for. But I wasn't going to feel better until I heard that from my doctors mouth. I then contacted our pediatrician, (who had diagnosed the girls) and she also said not to worry unless they were showing similar symptoms. ie, fever 5 days, red eyes, sores on lips and tongue, etc...... Bottom line if you are worried, take them to see a doctor just to ease your mind or confirm your suspisions.

Good luck and hand in there.

Natasha

Heidi collins
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Re: Tell me your lasting affects from KD

Post by Heidi collins » Thu Apr 05, 2012 10:40 pm

My 7 year old daughter is 4weeks post kd so far she is okay with her heart we go back
To the cardiologist in may but a big problem we have is knee joint and ankle pain, my daughter also gets tired faster since having kd, I know the kd is cause of my daughters joint and ankle pain bc before this she was very active in korean military martial arts and is currently a red belt (she has been in this since 5 years old) before kawasaki we went to class three days a week and never any joint pain now there are many mornings she wakes up with pain in joints and many times I have to help her walk into bed, I cant give ibuprophen due to aspirin regiment, has anyone else found
A good way to help with pain (i rub her down with absorbine jr which helps a little), should I take my daughter to doctor about joint pain what have other felt like works best

emerdoodle
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Re: Tell me your lasting affects from KD

Post by emerdoodle » Fri Apr 27, 2012 1:11 pm

Katie, diagnosed at 3-1/2 y.o. with two treatments of IVIG and no heart issues. She is now 8. She has joint pain in her knees, ankles, feet. She sweats alot and has a sensitivity to heat. Not sure if the sweating caused her adrenal glands to go into high gear or if it was the KD, but now she is being treated for early puberty because her adrenal glands have triggered her other glands to start producing hormones. Her skin is extra sensitive and breaks out in itching spells every time we mow the lawn. Anything that could irritate her skin does. Mood swings and emotionally sensitive. Not sure if this is from the KD or attributed to the hormonal activity from ther premature puberty.

I'd love to see the list that you are putting together. I think that all of us that have been affected by this disease can benefit. It's great for newbies on what is possibly to come and also as a warning sign for all parents/grandparents/families.

Thanks!

Deseray
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Re: Tell me your lasting affects from KD

Post by Deseray » Thu Jun 14, 2012 10:51 am

My son had KD in 2009. His lasting symptoms have been: (not sure that are all caused from KD)
*peeling fingers (almost constantly)
*bed wetting (occasionally- he is 9 years old now)
*He seems to have trouble breathing when he sleeps.
*Occasional head aches
*Fatigue

ivorygirl
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Re: Tell me your lasting affects from KD

Post by ivorygirl » Mon Oct 22, 2012 8:38 am

Lenna wrote:My son was diagnosed with KD at the age of 9 in 1999. For a long time we thought that KD hadn't left him with any long term effects. He has had lots of joint issues and tore his shoulder labrum when he was 13, but we never connected that to KD. But when he was 15, he developed Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a disorder of the autonomic nervous system, and basically the blood doesn't circulate properly because the blood vessels don't operate properly. His symptoms were/are dizziness, nausea, headaches, brain fog, and lots of fatigue. His cardiologist insists that there is no connection between KD and POTS, but please...two bizarre illness in a six year span that affect blood vessels, and there is no connection??!! We have been to many doctors and tried many treatments over the past 4-1/2 years. My son has been somewhat better for the past year because we understand a little bit more about where along the chain his autonomic nervous system is breaking down and have been able to finally put him on some helpful medications. But he still isn't great... There is so much more that the doctors don't understand about POTS and I feel that the key to my son's case might lie in its connection to Kawasaki's Disease.
I, too, believe that there may be a link between my son's Kawasaki Disease, which he had at 20 months old, and the P.O.T.S , which he was diagnosed with at age 13. We have tried a couple medicines for P.O.T.S., but neither has helped so far. I would be interested to know what has helped Lenna's son. My son is now 14, and is so fatigued that he is unable to attend school, and participate in the normal activities of a teenager. Our doctors have given no credence to the possible link between my son's current condition, and the Kawasaki Disease. He had an enlarged artery around his heart, which was treated with IVIG and aspirin, and his cardiologist has said that the artery has come back within normal range, and has cleared him until age 15. We now have a different doctor who diagnosed the P.O.T.S., and aside from exercise, which helps him to function a little better, we sit and wait hoping that some day, there will be a cure for his P.O.T.S. (or could it be a recurrence of Kawasaki Disease in a different form?)

grysmom
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Re: Tell me your lasting affects from KD

Post by grysmom » Wed Nov 14, 2012 5:16 pm

My son is 28 years old. He was diagnosed with KD at 18mo. He gained 5 lbs in fluid retention, swelled, hands and feet peeled, whites of eyes were blood red, body covered with petichiey (sp?) Anyway, we thought it was over and done with. He has had several weird medical issues in his lifetime. Today I was told by a neurologist they are all related to KD. He was diagnosed in 2nd grade with a 5mm lesion/tumor in his brain. After much workup and lots of worry on our part, it was decided it was "of cystic nature" and nothing to worry about, though he had some 'spells' where things were distorted, visually and auditorially. We were told it was because of the temporal lobe cyst. Then when he was 3 he had menengitis. Nothing grew on any cultures but he did have white blood cells in his spinal fluid. He came through that OK and we moved on. When he was 23 he was donating blood (which he had done before) and was told he was positive for hepatitis C. After seeing a doctor and lots of blood work and some medication and special diet (IE no alcohol or tylenol or anything that stresses the liver) months later he was told it had resolved and he did not have hep C. We always said he got the weirdest things.
Today a neurologist we were seeing because of an increase in his migraine headaches told us that #1 he does not have a brain tumor. He has an arachnoid area that is 'typical' of people who have had KD. Something to do with a possible small blood leak while the vessel was weak at time he was sick. He did not have 'spells' because of this, those were migraine auras. Boys who have migraines typically start around the age of 7. He also said that the white blood cells in his spinal fluid could have been related to the KD! ARE YOU KIDDING ME??? Then he said that the red cross, if told of the history of KD should have known that the hep. titer would have been off. How bizaar is all of this? Has anyone else been told this or is this guy a quack? If it is true, it makes my son's life make a little more sense than him just being the kid that got all of the weird stuff.

TreD-feetKD
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Re: Tell me your lasting affects from KD

Post by TreD-feetKD » Thu Jan 03, 2013 6:13 am

HELP! My 7th month had the IVIg treatment on Dec.27th was discharged from hospital by Dec.31st. Its day two since we have been home with him and I'm finding it hard for him at night. I understand it will take him awhile to fully recover from this horrible ordeal but if anyone is expericing this please let me know how to deal with it. He falls asleep on for a few mins and wakes up crying( his cry usually sounds like he is in pain).He has been sweating but no fever( Thank God), I even morsterize his skin through the night. I have layed crying for the last two nights just praying over him. Is the side effect normal with KD?
Also i have noticed that since the IVIg treatment my infant has been holding his mouth open. He does close it from time to time throughout the day, but he mostly holds it open. He has never done this before KD. Did any of you parents deal with swollen lymp nodes post KD or IVIg?

KCLP
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Re: Tell me your lasting affects from KD

Post by KCLP » Thu Jan 03, 2013 6:10 pm

Hi TreD-feetKD,

Having a baby home from the hospital soon after a KD diagnosis is difficult. You can't help but to worry and to keep constant watch over them.

Some "mouth breathers" actually have asthma. The next time you talk to his Pediatrician you could discuss with him/her your concerns.

Please do remember to get some sleep and take care of yourself. It is easy to run yourself down when you have a child who is so sick.

Best to you in the New Year,

KCLP
Last edited by KCLP on Wed Mar 26, 2014 4:24 pm, edited 2 times in total.

snlchief
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Re: Tell me your lasting affects from KD

Post by snlchief » Tue Jan 22, 2013 3:37 pm

Perhaps I am the "grand dad" survivor of KD. I was finally diagnosed with KD due to chest pain and a myocardial infarction just weeks before my 50th birthday! They found 13 cardiac vessel aneurysms. I have been on aspirin, plavix, statins and warfarin since (I am now approaching my 61st birthday). As a kid in the early 1950s, I had a history of high spike fevers, chest pain, abdominal pain, joint pain and migraine headaches - of course nobody ever connected the dots. During my teen years, I was on the cross-country track team (and was forced to run even when I felt bad - fortunately, I lived through those experiences). As an adult, I have been generally healthy, but with the same problems as when I was growing up. These were eventually diagnosed as ulcerative colitis, arthritis, and Kawasaki's Disease. Since my KD was retrospectively diagnosed in 2001 with my heart attack and cardiac catheterization, I have had a couple additional myocardial infarctions, each relatively minor. However, due to the number and locations of my aneurysms, neither surgical intervention nor placement of stents had been suggested. I still have migraines, but only occasionally instead of weekly. Whether any of these conditions are related or not remains unknown, but it is intriguing that all (except, possibly the migraines) are immune-related disorders. I continue under fairly aggressive observation and treatment by my cardiologist (quarterly check-ups). Believe it or not, none of this has really been debilitating, although I do, on occasion, have a few days here and there when I feel pretty lousy and inert due to pain and exhaustion. On those occasions, a day or two of bedrest usually does the trick. I have a PhD and have been an active faculty member at three major medical research centers over my career. I'm not planning on retiring for another decade!

So, to all parents of kids with KD, just make sure that you have good physicians watching your kids. Enroll them in studies if this is what you require in order to afford the medical observation and care. Otherwise, let them be kids and enjoy life! Hopefully, they, too, will enjoy long and fulfilling lives!

grownafterkd
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Re: Tell me your lasting affects from KD

Post by grownafterkd » Fri Mar 29, 2013 11:58 am

i was 8 when finally diagnosed(now 24, with a child, i mention my child because i didn't see alot of doctors after kd till i was pregnant, and not sure if some of these that did go on since kd are related to kd.) the doctors only had me go back once, 6 months after diagnosed, for a echo. but over the last year i have gone to several heart specalist and done many echos, ultra sounds and other heart/bp related testing, and everything comes back clear besides a mild case of mvp(mitrovalve prolapse) that apperantly like 7/10 women get.


1) Periods of fatigue and dizziness for no apparent reason
2) much more easily frustrated and irritable
3) Intermittent chest pain, occurs several times every few mos. (MVP may be the possibly)
4) high blood pressure( i wasn't tested for BP till pregnant, but still have high bp two years after pregnancy)
5) migraines
6) frequent episodes of depression, and easy onset of anxiety.
7) joint pain, mainly in my knees, and hands and elbows,& neck
8. ) sore feet, no matter my activities for the day my feet are continually sore like I've been on the for 72 hrs.
9) peeling fingertips, this comes and goes but will last for months at a time.

weather related to kd or not i thought i'd share in-case others have similar issues.

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