Tell me your lasting affects from KD

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bethroth
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Tell me your lasting affects from KD

Post by bethroth » Mon Jun 01, 2009 2:31 pm

Hi everyone,

I am trying to make a list of lasting non cardiac affects all of our children have suffered from since KD. If your child has had lingering problems please respond! I am going to make a chart with lingering issues and what seems to be the most reported ones. So if your child suffers from things like joint pain past the recovery period please let me know. As soon as I have a good response I am going to submit it to our Ped. and to the KD experts. Maybe if they see that there are enough of us out there that are dealing with these things on a daily basis they will take the time to look into it and we will no longer feel like we are nuts and our children just might not need to suffer any longer.
Thank you
Beth (Gregory KD 7 years ago this June 6th at age 5)

mkthorpe
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Re: Tell me your lasting affects from KD

Post by mkthorpe » Tue Jun 02, 2009 8:25 am

My grandson Conner had KD last August, just after his fourth birthday. He was treated with two rounds of IVIG at Riley Children's Hospital in Indianapolis. He is still suffering from many lingering problems. He has atopic dermatitis / eczema which he had never had prior to KD. He had mild asthma prior to KD, this past winter his asthma was much worse. He was on steriods multiple times along with his inhalers and his nebulizer medications. He complains of leg pains constantly -especially if he gets a little tired. He also often complains that his head hurts, and has spells where his stomach hurts. He tires easily and needs more sleep than average for a child his age. He also has some behaviour issues - he is very easily frustrated - and more hyper than before. His regular pediatrician listens to us and is following him closely. His infectious disease doctor at Riley doesn't believe any of these issues are related to the KD - go figure. His last EKG and ECHO were in March and there were no problems.

murjoyd
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Re: Tell me your lasting affects from KD

Post by murjoyd » Thu Jun 11, 2009 1:09 pm

Beth.

Nathan is 6 months post-KD and he still has really dry skin in places. It is very specific to the areas that had the most rash during the acute phase of KD, below his knees and above his elbows. His sister has eczema, so it is in the family, but the location of his dry spots make me think that there is a link to his KD. He has also been very irritable for the last 5-6 weeks, maybe teething-related , but I'm not 100% sure about that as he doesn't get relief from a cold teeting ring. Hopefully this is a phase he is going through and not an indication that there are on-going problems such as joint pain that he can't tell us about yet!

Dior'smom
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Re: Tell me your lasting affects from KD

Post by Dior'smom » Sat Jun 13, 2009 12:04 pm

My son was diagnosed in Jan 09 w/a recurrance 28days later. To date, my son's issues are still lingering & more are becoming evident just about every month. I know you stated lasting effects except heart problems, but I'll start w/the heart. He was diagnosed w/coronary dialation immediately after being diagnosed. The TERRIBLE irritability has been present since his diagnosis & still persists. Along w/that came the stomach pain which has increasingly gotten worse to the point that just about everything he eats has him doubled over in pain. He developed an aneurysm in April. His joint pain is mostly in his legs & sometimes feet. he has occasional dizzy spells & chest pain. Here it is just about 6mos in & my son's toes are peeling & red at the bottom AGAIN!!(Something else to call his doctor about on Monday) After seeing an Rheumatory Specialist for the first time two weeks ago, we were informed that after listening to the arteries in his neck, they seem to hear some type of murmur in his carotid arteries. We have been told that our son's KD case was not atypical that he had a severe case. We are still in the trenches of KD & its lasting affects.

Romaine(Dior'smom)
"An EXHAUSTED & OVERWHELMED KD Mom"

taysmom
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Re: Tell me your lasting affects from KD

Post by taysmom » Tue Jun 30, 2009 8:05 am

My daughter Taylor was diagnosed in 2002. Long term effects that I suspect are related to KD are exema and frequent joint pain. Much to the similarity of others as I am reading and researching.

mkstuf
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Re: Tell me your lasting affects from KD

Post by mkstuf » Mon Jul 06, 2009 10:57 am

I had KD in 1995 when i was seven years old. I had heart damage because of KD but I have not had any heart problems since. I don't have any real long lasting effects from the disease other than occasional hand and foot peeling. I don't even know if that is from KD or not. But other than that I have been healthy.

Mike Epperson
KD survivor

award
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Re: Tell me your lasting affects from KD

Post by award » Wed Jul 08, 2009 8:39 pm

You go girl!!!
If you, or you can get someone, to diagram it in a fancy chart it will be easy to read and show the percentages well. I am very computer challenged myself but I have seen my patient's (usually engineers!) charts and they are impressive! THey also show interesting trends.
I have noticed alot of similarities in the complaints here as well but particularly stomach aches, joint aches, more fatigue than normal, periodic chest pains, headaches, and behavioral issues seem to be very common.

After 1 year post KD, my son has alot of complaints of:
1). Stomach aches--which he NEVER had before unless he was ill with a stomach bug
2). Eczema patches which never occurred before but as you know, are very common with KD--particularly having the first episode after KD
3). Periods of fatigue for no apparent reason when he was ALWAYS on the go before
4). Definite behavioral issues--much more easily frustrated and irritable than he was before KD which researchers have actually done studies on(behavioral scientists/Psych) and found this to be higher in kids after any illness that affects the brain--specifically the meninges, the lining of the nerves/brain such as Meningitis, encephalitis, etc., and since KD causes meningeal irritation as well, this would be expected. There are only two such studies specifically on post KD effects, that I am aware of anyway.
5). Intermittent chest pain which has lessened but still occurs every few mos

Good luck Beth!!!

honeybunch
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Re: Tell me your lasting affects from KD

Post by honeybunch » Sun Oct 18, 2009 10:29 pm

My daughter had KD in 1998 when she was 4. She get joint pain and extreme joint pain when she is sick that we think is related. I am not sure what other things might be related to the kd, that is kind of why I'm on here looking around.

aidansmom07
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Re: Tell me your lasting affects from KD

Post by aidansmom07 » Tue Nov 03, 2009 8:47 am

Aidan was diagnosed with KD at age 6, received IVIG and all his cardiac echos have been normal to date. His lingering effects that I notice are occasional headaches and fatigue that coincide with each other...almost migraine like but did not occur before the KD and it makes him bedridden for a few hours which I think is his body telling him he needs to rest. Also, when he gets run down he will develop a low grade fever and it almost looks like his lips & eyes get pinker. He had an episode last year of possible mono(extreme fatigue and low grade fever for 5+days), the mono spot was negative but further bloodwork showed he did have exposure to the virus at some point. At the time he thought he was having KD agains as his symptoms felt the same. Also, he is active & competitive in sports, basketball & soccer and I notice his aerobic endurance is poor; its like he fizzles out toward the end of the game even though he may be the star player of the game. He also gets occasional stomach aches which we just call "gas". Last spring this complaint occurred with a low grade fever and because it was in his right lower quadrant with rebound tenderness I took him to the doctor to make sure it was not appendicitis. They did bloodwork and his CRP was slightly elevated(his CRP was off the charts when he had KD) so we decided to do a CT scan which came back negative. The doctor said he could have just had some minor inflammation of the lymph nodes in that area as a result of some virus and he was sure it could not be associated with his KD in the past. His pediatric cardiologist also says his aerobic capacity/endurance does not have anything to do with KD. He has no behavioral issues but is highly sensitive which he was prior to KD.
I think a chart is a great idea as I think deep down there are longterm effects of KD that are somewhat insidious and beyond the scope of science at this point. Thanks!

Michele
Aidansmom07

AmbiJ
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Re: Tell me your lasting affects from KD

Post by AmbiJ » Wed Nov 04, 2009 9:49 pm

Hi there,

I have a 13 yr old daughter who had kd right after her 1st birthday in 1997. She doesn't seem to have any heart trouble, but the thing I am noticing that caused me to seek out other people who have experienced kd is more behavioral. She gets very irritable and tells me how angry she feels inside at times. She also has trouble conceptualizing consequenses before her actions. It isn't anything extreme and I do not know if it is related to kd or not. But I just wanted to see if anyone else has experienced this. My husband and I are just trying to determine how to deal with this behavior so we can best support her.

liquidambar
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!

Post by liquidambar » Thu Nov 05, 2009 7:57 am

Puberty,
brings out things that have been there perhaps all along.
For my son he had very mild undected seizures untill he hit puberty. Then they became worse and worse as time went along to almost constant myclonic jerks, grandmal seizures.

My daughter had depression issues when she was little but undetected - just occasionally you could see she was anger for no reason when little - but not untill she hit puberty did that manifest into whew! You could cut the air with her attitude when I walked into her room. Still she did great in school and was very well liked in school. But away to college and that dark attitude, not thinking ahead, or correct thinking, self medicating with alcohol. We had her on zyloft in highschool, but it really was not enough. She is on prozac now.

It has something to do with messing up the mitochondrial (energy cycle). we were always on the low fat diet, when what we should have been on was the Atkins diet - low carb diet instead. The Atkins diet with on 15 carbs a day or a low glycemic diet of 30 carbs a day can control epilepsy. AND it probably could have helped my daughter, if I had only known.

taysmom
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Re: Tell me your lasting affects from KD

Post by taysmom » Sun Nov 22, 2009 10:44 pm

My daughter had KD in 2002 at the age of 2. She is now 9. Long lasting questionable effects I would consider to be out the norm, skin issues, eczema. Mood swings and sensitivity to crowds and lots of noise. Leg pains especially shin area and knee. Major digestive issues, seems to dehydrate quickly and have had many metabolic disorder tests, resulting in nothing. Over the past 7 years, she has been ill often, more than most children I know and she has 2 older siblings that are in perfect health. I worry so, and wonder if other parents have the same concerns as I. When she complains of something out of the ordinary, I am sent over the edge with concern, because of the unknown.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Mon Nov 23, 2009 1:29 am

taysmon
I know what you mean. The worry - the instinct that something is wrong and being missed by the doctors.
The metabolic stuff too!
My children were never tested for it, but my husband after he became ill at 34 did. He had to go all the way down to Atlantic, GA to be tested by one ofthe head guys in this field. They had to take a muscle biospy one from his arm and one from his leg. We did this same test in Lousiville, KY, but it was for nothing! The muscle has to be fresh,and by the time they took it and shipped it, they could not tell. So the second time he actually went to GA. He had an acquired mitochondrial disorder that is called Oxidation Phosphoralation. The problem lies with in the complex I area of the energy cycle mostly.

The muscle biopsy was not pretty, and my husband forbade his children to undergo this test. He had a very bad experience in Louisville. Not only was the test worthless but they did not give him enough numbing for the pain and the procedure.

The only treatment they recommended was coenzymeQ10, mega doses and cost a fortune. I also bought it for my kids. It did not help, by the way. We wasted our money. I have been told why it did not work, and it is complicated. But mostly it was explained to me it was like throwing water on a burnt out building. Too late.

I will tell you what has helped this past year and been a miracle for all of my family and that is the Atkins diet. We are watching our carbs. No sugar, no white flour, not a lot of milk (plenty of cream and half and half though) we use to drink on skim and so now I get regular, it surprised me to find out that milk has a lot of carbs.

There is something messing up the workings of the energy cycle that converts carbs into glucose. Perhaps a poison, or maybe our very own immune system. So if we use the fat cycle instead just as they do for epileptics (starvation was once the cure then later they developed a diet of almost fats alone called Ketogenic) the body will correct itself it it can. This Ketogenic diet after two years on this diet could cure - yes cure 30 to 39 percent of epileptics. It could cure our children.

Could it help your daughter to become normal again. I don't know, I think there is a brain injury with both of mine. My daughter was (the top) yes - she was number 1 of her class in highschool out of 300-400 graduating class, and has two degrees from a University. But I am not sure she is really level headed there is something about her??? My son has a very high functioning autism called aspergers, maybe tourettes too. But this diet will help on the GI issues, flares (strange temperature that show up that you know is not just a virus), aching muscles in the legs. Give her plenty of vit D, C, E, fish oil and turmeric or a compounded substance called cucumin. I am not sure if cucumin works we have only been on it a month. And watch those vaccines. A recent Hep B sent my daughter back to the dark old days, but she is climbing back out of it. She is finally sticking to the diet and believing what I am telling her. She really was feeling great this weekend and actually went somewhere to meet with her fellow employees at a get together. She works at a psych nurse, and is really good at it apparently.
I hope this helps you.

The carbohydrates that are

Gangzk
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Re: Tell me your lasting affects from KD

Post by Gangzk » Wed Nov 25, 2009 12:51 am

Does anybody ever attended the Nov.7th 2009 symposium on Kawasaki Disease in UCSD(University of California San Diego)? I wasn't able to make it. If so, is there anything new discussed in the symposium speaking of lasting effects from KD? This just worries me everyday with my 4 year old who was just diagnosed with KD last October 2009. I started to be a paranoid mom that everytime my daughter had certain changes whether it be her behavior or skin or anything I always think of the affects of KD. I would appreciate if those who had been diagnosed with KD in the early years from 1970s to 2000 will continously post in this forum. You are my only reference as time goes for my daughter's post KD effects while there are still no answers from professionals regarding this matter. To yourself you could be one person, but to one person you could be the world and in this case that would be me and my daughter.
Thank you so much and Have a safe and wonderful Thanksgiving. God Bless.

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Joe
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Re: Tell me your lasting affects from KD

Post by Joe » Wed Nov 25, 2009 9:32 am

Gangzk wrote:Does anybody ever attended the Nov.7th 2009 symposium on Kawasaki Disease in UCSD(University of California San Diego)?
The videos from the event will be available soon. Stay tuned.

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