health issues long past KD

General discussion regarding Kawasaki disease
kdvader3
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Location: San Diego, CA

health issues long past KD

Post by kdvader3 »

Hi All,

I had KD when I was 4... 28 years ago and I have been curious about my health issues in comparison with other older folks like myself. I see the questions pop up now and again and I know that there are experts out there who do not believe that any long term issues have anything to do with KD, but my concerns still linger. If any of those former KD patients are willing to post some of their quirky health stuff here, maybe we can see if there are common issues that should be addressed. Some of my stuff includes:

1. Joint pain
2. Migraines
3. tendency to get tendonitis and bursitis without obvious injury
4. IBS (Irritible Bowel Syndrome)
5. Memory issues
6. Chest pain with no obvious cause
7. tachycardia (rapid heart rate)
8. Degeneration of spinal disks (Ive had 3 surgeries for disk herniations and 2 other disks that havent been worked on)
9. Diagnosis of Fibromyalgia
10. Chronic fatigue (needing more sleep than average and still not feeling rested)
11. paricarditis (inflammation of the sack surrounding the heart), or inflammation in the chest wall
12. excessively dry skin (my hands crack open all the time- even with lotion)
13. dermatitis (patches of skin that flare up to a deep red and flake)
14. Excessive sweating and or flushing
15. Growing pains from hell (during teen years)

This is just the things I can think of off the top of my head.

Bry
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Joined: Tue Oct 16, 2007 1:35 am

Re: health issues long past KD

Post by Bry »

Hi,
I actually had KD when I was 19 and am only 23 so there hasn't been too much time that's passed; however, in the short amount of time I feel like there are several things that began right after having KD. I have also talked with doctors who do not believe that any any of my symptoms are connected to KD, but since I was so old when I got it, I know that there is no way that all this can be some random coincidence. I had heart problems before KD so its hard for me to differentiate when it comes to chest pains, but the others I have listed were definitely new symptoms that started after KD. I hope this helps. I'm also curious as to what could happen in the future. I hope all is well.
Bry

1. Migraines (I had few migraines before KD, but after KD I began having migraines almost daily, went through periods of time when I'd have then for weeks on end, and was hospitalized for them)
2. Joint Pain
3. Memory Problems (I feel like there is a significant difference between my memory before KD and after. It seems like my long term memory is the worst)
4. Skin Irritation and sensitivity to sun (especially around my eyes)
5. Anemia (continually black out when standing up, excessive bruising, etc)
6. Dry Skin on hands & feet (I also use lotion excessively and it doesn't seem to help)
7. Chronic Fatigue
8. Excessive Flushing
9. Extreme sensitivity to light, which also contributes to the migraines
(I'm sure there's a few more, but it's about 2am so I'm thinking a little slower right now)

kdvader3
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Joined: Sun May 20, 2007 1:56 pm
Location: San Diego, CA

Re: health issues long past KD

Post by kdvader3 »

Hi Bry,

I hope you dont mind my asking about the nature of your heart issues... something you were born with or something you developed? I was also wondering if it was possible you had KD much earlier and it was misdiagnosed... Ive heard of many people who have had this happen and then get a recurrance later. Have your doctors given you an idea of a type of arthritis you might have? Sorry... I just have so many questions. I have heard of so many people with the same issues post KD and it boggles my mind that no doctors seem to understand that it is just cant be coincidence that all of these young people have so many of the same problems. I hope the best for you and I appreciate you answering my post.

-Kris

bethroth
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Re: health issues long past KD

Post by bethroth »

I found your post very interesting. My son was treated for KD 5 years ago at the age of 5. For the past 5 years we have delt with one strange problem after another. For a long time right after KD we would be going to the dr.s weekly with some new strange symptom. I have gotten to the point that I don't even go any more because they never have any answers for us. Gregorys list of complaints are so long that I will list only the ones that rereacure most frequently.
Peeling hands and feet
itcy skin (has taken Zyrtec once a day for 5 years if he misses 2 doses breaks out in hives)
joint pain in all joints most severe in knees and ankles
unexplainable temps that will last 1hr to 1 day
headaches
stomache aches
dizziness
irritability
sensitivity to light
red blood shot eyes
racing heart beat that they have not caught with heart monitor
Like I said the list goes on and on. It is very frustrating as a parent to watch your child that was so healthy prior to KD turn into a long list of complaints. I wish that someone would look into these lingering problems. I have always felt that KD has affected my childs whole body and worry that it will never get better. Thanks for listing your symptoms it makes me feel better that Gregory is not the only one that is going through so many unexplainable problems. Maybe if there are enough people out there that with these same problems the dr.s will start taking us more seriously.

Beth

kdvader3
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Re: health issues long past KD

Post by kdvader3 »

Hi Beth,

sorry to hear Gregory is having all of those problems. KD is hard enough to get through without the extra nonsense that seems to tag along for the ride. Ive gotten used to my quirks, but kids shouldnt have to get used to these kinds of things. The weather changes and I feel it from my jaw to my toes. The more I think back about the weird stuff I dealt with growing up, the more I realize how much it impacted my childhood. It amazes me how many doctors told me that my fatigue, joint pain and chest pain were all in my head or blamed my parents for being, "overly protective." They made my parents feel guilty like they were somehow responsible for what I was going through. It is good to know that you stick to your guns and you keep being an advocate for him... doctors dont know everything.
-Kris

Bry
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Joined: Tue Oct 16, 2007 1:35 am

Re: health issues long past KD

Post by Bry »

Hi Kris,
It is really comforting to know that I'm not alone in having recurring symptoms that seemed to be linked to KD. As for my heart, I was born with mitro valve prolapse and so I have always had heart palpitations and went through some time in high school when I would actually pass out when running, but from what I know it is not connected to KD. That's why I wouldn't be able to tell if I were having chest pains from KD or from the other. I have never had a Dr. tell me I may have arthritis, the most they've done for the joint pain is say to take vitamins that they thought would help.
I agree that there needs to be a study done to look into the long term effects and all of these symptoms. I know that I tend to only see specialists now, which I think makes it hard for any one Dr. to pin point if it all came out of having KD. So it is hard for any one Dr. to see a pattern regardless, but I am very picky with Drs now which I think you should be. I have switched a lot of Drs for not taking into consideration my history of having KD and working with me so I think its great that everyone is keeping strong. I hope all is well. Thanks for writing me back
Bry

Beth,
I think it is amazing that you are advocating for your son like that. I was 19 and I know if it weren't for my Mom being on the phone with the Drs everyday that I would not have survived so no matter what the Drs say I think you can know better than any one what's wrong. Sometimes its just pushing till you find the right Dr who is willing to go the extra mile to figure the puzzle out. I hope everything works out for you and your son.

sjhughes79
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Re: health issues long past KD

Post by sjhughes79 »

Hi Everyone,

I am going through the same stuff with my son and his dr. right now. Everything I bring up, his dr. refutes it as being a side effect of kd. It is incredibly frustrating and has made me not trust him. He is also a self confessed "kd expert" and I feel like he could learn a little from this website! Has anyone noticed dark/pinkish circles under eyes? It almost looks like bruising in the right light but it is also kind of peeling/dry skin. My son's dr. says it is classic allergies, but he's had it since the day he spiked a fever before he was diagnosed with kd. I don't believe it is allergies. If anyone has noticed this, when will it go away?? or does it at all? My son is almost 10 weeks out of his IVIG and is still on aspirin therapy due to some minor dilation of his left coronary artery (2.4mm). I keep seeing things written about reddening of the eyes themselves, but I'm specifically curious about under the eyes.
Thanks!
Samantha

michellemasonsmom
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Location: Louisiana

Re: health issues long past KD

Post by michellemasonsmom »

My son had the dark circles under his eyes for a long time post KD. I just attributed it to the whole KD ordeal and recovery. (he also experienced the eye issues; light sensitivity and redness.)

Momcat
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Re: health issues long past KD

Post by Momcat »

Same here with the dark circles, they lasted a long time, but did finally go away.

I just want to say THANK YOU to the young adults that are now posting here. It is WONDERFUL to hear your input and about your symptoms; many of us have had the same with our kids. We've also heard many of the same comments from doctors---"not KD related". We've also heard similar sayings from the "experts", but I think KD victims and parents have a lot to offer with long term issues that specialists either ignore, or don't take time to study. Why an epidemiologist hasn't contacted all of us is something I've never understood.

One of the things that continually amazes me is the lack interest in KD from the medical community (not talking about the KD specialists here). That no one seems to think that really digging into KD would be a good idea to help figure out adult heart disease. It seems that if the arteries cause adult heart attacks - a leading cause of death- that it would be a no-brainer to check out what happens with these kids. The investment of the time and energy might help hundreds of thousands of people.

We have many of the same issues associated with our daughter that people are talking about on this thread. Some we don't, but until a major study is done with kids and adults who were/are victims of KD, then no one is going to put it all together. It seems everyone is too involved with finding out WHAT causes KD. Sometimes I wonder if working backwards might actually help someone figure it out. There are an awful lot of similarities in the survivors!!

kdvader3
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Joined: Sun May 20, 2007 1:56 pm
Location: San Diego, CA

Re: health issues long past KD

Post by kdvader3 »

Hi Everyone,

Thanks to you all for replying to my post. I keep hearing the same sort of things from so many people about "leftovers" from KD. I know there isnt one doctor out there who will go on record as to saying this stuff even might be KD related. My back surgeon was the only doctor who Ive met who said that he thought that my disk degeneration was somehow related to KD, but he wouldnt put it in writing because there is no other evidence to support it. His theory was that during KD, collagen, which is an important building block to many different tissues, was damaged... probably by my own body in an attempt to fight off whatever was making me sick. It made since when I looked at how many different tissues... like skin, tendons, ligaments, bursa, spinal disks, etc. had collagen in them. If I remember correctly... even veins and arteries have some collagen in them. If there is an immune system process which attacks these tissues and makes them inflamed, it would explain a lot of symptoms of KD as well as some of the lingering issues we are left with.... like damaged arteries and arthritis.

I think that we (the patients and their families) need to start compiling our own research... lists of people and the "leftovers" they have been dealing with since KD. If we get a bunch of people in black and white for the experts to realize what is really going on, maybe they will take us seriously. Maybe somebody will decide it is worth looking into.

I saw my new cardiologist today. She seemed genuinely excited to have a post KD patient of my age. Going down the list of my issues, she had a lot of questions about KD and I have a feeling she will be doing a lot more reading in my file. She will be running some more tests in the coming weeks to make sure things havent changed from my last cardiologist's evaluation. My EKG was still abnormal, but at least it is consistantly abnormal and not getting worse.

Best Regards to All,
-Kris

Al-n-Charl
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Location: Athol, MA

Re: health issues long past KD

Post by Al-n-Charl »

I just got an interesting reaction. I entered all the symptoms Kris experienced on WebMD and got a severe warning: "If you are experiencing a rapid heart rate associated with dizziness, lightheadedness, fainting, shortness of breath or chest discomfort please seek emergency medical attention."...There were 20 conditions associated with these symptoms....I decided to check the web regarding IVIG side effects then vasculitis diseases and their symptoms. I found that there are several vasculitis diseases which, like Kawasaki disease, affect the major arteries: Takayasu's arteritis (http://vasculitis.med.jhu.edu/typesof/takayasu.html#who) and Henoch-Schonlein Purpura (http://www.aafp.org/afp/980800ap/kraft.html). Their symptoms range from flanking leg pain, joint pain, abdominal pain, headaches...etc.

If these other vascular diseases can have lingering side effects, doesn't it seem logical that Kawasaki disease could have similar effects?

Food for thought,
Charlene

TOMSHELL
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Re: health issues long past KD

Post by TOMSHELL »

Hi. My son had KD when he was 6, he is now 19. Since he had KD he has had many symptoms that I believe is related to his HD, but the doctors do not. He has multiple large aneurysms. Here are the symptoms he has encountered since KD.
1] Shortness of breath
2] Allergies
3] Joint pain
4] Bad headaches
5] Sensitivity to light
6] Low blood sugar
7] Light headed
8] Is always coming down with a cold, whooping cough, flu, strep, [ was never sick before he came down with KD]
9] Shingles
10] Bad hives
11] gastroentenitis [don't know how to spell it]
12] Pains in his stomach
13] numbness in his hands
14] Dry skin
There are more, but I just can't remember them right now. I hope this helps.

mmiritello
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Location: Tinley Park, IL

Re: health issues long past KD

Post by mmiritello »

My daughter also has experienced many "side effects" of KD. She had KD at 7 months of age and is now 21months old. She is almost always irritable, especially in the monring which I think is probably joint related, dark circles under her eyes, fevers that come and go for weeks on end, and she has been consitantly sick since having Kd and is now seeing an immunoligist to see if there is anything else going on. I just wish that she was old enough to tell me that things hurt. I am so glad that there are other people and families experiencing these effects of KD an dnot just us.

katie22
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Re: health issues long past KD

Post by katie22 »

Hi everyone,
I had KD when I was about 4 years old. I am now 22, and don't believe I have suffered any long term effects from the disease. The only thing I can really recall was after the 2 week hospital stay, I did continue to have my feet peel for a little bit after. I don't recall any long term effects though. I have never had any type of shortness of breath or chest pain that would be considered abormal. I participated in tons of sports when I was younger, was even a collegiate athlete, and never had any kind of abnormal side effects. I was interested in seeing if others had long term side effects? Or is this disease something that can be passed down genetically?

dgutierez1
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Re: health issues long past KD

Post by dgutierez1 »

I see that this discussion is old but I just joined this group and wanted to post. My now 9 year old daughter got KD at the age of 5. She too has been so ill since that time. Up until recently, everything was dismissed as not being related to KD. As her mother, I felt as a failure at not knowing how to help her more. At this age, she should be able to enjoy life so much more. Here is a brief list of some common stuff for her:

1) fatigue, she begs you to put her to bed at night, if not she is physically sick (stomach & headaches)
2) migraines, also brought on by fatigue
3) unexplained fevers - many seem to be related to just simply over-doing it ( 2 nights in a row up a little later)
4) severe leg/back cramps (this did go away once she had surgery for sleep apnea which also developed after KD)
5) Acid Reflux Disease - also began after KD
6) Lactose Intelorant - also new since KD
7) inablility to regulate body heat, cannot handle temperatures over 84' indoors or outdoors - gets lathargick & fevers!
8) easy weight loss (at nine years old she weighs between 53-58 pounds)

So, with all this said - we have recently been sent to an Infectious Disease Doctor who has thankfully told me that I am not crazy, I am not a paranoid mother (by the way she is my 4th child - not my 1st). As he explained it to me, about 1 in 50 kids affected by KD do not recover on the normal path. My daughter happens to be 1 of them. He did explain to me that he feels that KD is not just a Heart problem but also an AutoImmune problem. In my daughters case he explained this: her immune system is working in over-drive every day, as if she is running a marathon everyday of the week. When she does come down with an illnesses, instead of her immune system firing a "single shot" at the problem, it is firing random "wild" shots and it isn't even productive toward the illness. Thus, the reason for her fatigue and her inability to gain weight and the inablilty to fight off illnesses and recover quickly from them. This has been such a relief and I am so thankfull to have found a doctor that is willing to listen and to help. His primary focus is to find ways to live each day a little easier. As he explained to my daughter, he can help some of her issues but some of them she may very well have the rest of her life.

I hope that this may shed some light for some of you. It actually feels so good to let it out in words - so thankyou!

Deanne
(mother of 4)

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