Tell me your lasting affects from KD

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

Post by sharonblakey » Wed Sep 21, 2011 5:04 pm

My son is 1 year post kawasaki, he was 6 years old at the time, it was diagnosed in week 2 after constant visits to the doctors/hospital, I was told every time its a viral infection !!!. I am still looking at websites for information about kawasaki disease as there is so much left unanswered!!, since he has been dicharged from the hospital after being on aspirin for 6 months, I feel completly out of it, no monitoring etc etc.

I believe my son suffers quite badly with some form of behavioural problem, lovely kid, but can fly off the handle over the slightest thing (not normal tantrums) he is very sensitive, insecure, still not sleeping properly night times, is behind in his learning, suffers from severall tummy aches and leg pain... doctors all think this is normal !!!, so what can you do !!!, I feel that i would like to see some form of counsellor or phychiatrist, because i feel that i should do whats best for my son and pursue a way to help him through life to deal with situations, that he is just not capible of dealing with.

Healthwise he has gone a good 2 months without any sign of illness, yey !!!... just after kawasaki he seemed to get everything that was around, 6 months after kawasaki, he was diagnosed with strep. been a nightmare year, but i feel that it is still ongoing with very little help out there, I joined the kawasaki support group, who have been amazing so would recomend them to anyone looking for guidance.

SHELLBELL92345
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Re: Tell me your lasting affects from KD

Post by SHELLBELL92345 » Thu Sep 29, 2011 3:27 pm

My son Ethan was diagnosed with KD in May 2010. Since then he seems to have unexplained joint pain in his ankles and wrists, especially when he is tired. 2 x's since he has had severe pain where he won't walk with swelling in both ankles and wrists along with extremely red eyes.

cedarsfall
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Re: Tell me your lasting affects from KD

Post by cedarsfall » Sun Oct 09, 2011 8:45 am

my daughter is 9 months post kd
she has a rash/weave like on the outer part of the palms of her hands, this happened when she had kd and hadnt gone away.
she started developing hives, large/small welts in groups on the body that are raised and go away after a few hours. they happen on occasion, they do not itch. an allergist said it was not allergies
she has since developed a headache w fever and hives, goes away, comes back w abdominal pain(this is fairly new) her id dr said for her to see an immunologist and rheumotoid dr. we will be scheduling for that.
she has always been a quiet, clingy, type. which is far more now so. she developed kd within 3 wks of her vaccines. although, EVERY dr i speak to on this says numerous tests have been done and ruled this out. i still feel her vaccines had something to do with this.
i find myself extremely paranoid over everything. which after the ivig her immune system seems to be doing wonderfully and is just now having the fever situation.
she also had an eye appointment, where they stated her coronary artery were 80% withered away, her id dr's do not feel the kd had anything to do with this, that this was something she was born with.
her vision is great though. but we have to go back for more pictures

cedarsfall
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Re: Tell me your lasting affects from KD

Post by cedarsfall » Sun Oct 09, 2011 9:12 am

@sharonblakely
after my daughters kd, i speak directly to the ID (infectious disease) dr that worked with her. I have asked her questions or updated her a handful of times since the diagnoses.
she has been very helpful and have her email address, as well, to ask questions if i need too. she has been very gracious in answering my questions and lending a helping hand in finding out what is or isnt related to the kd

just an idea, so you are not out of the loop w the dr's.

KCLP
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Re: Tell me your lasting affects from KD

Post by KCLP » Sun Oct 09, 2011 1:55 pm

Cedarsfall,

There are types of arthritis that are accompanied with low fever and more rarely rash. A Rheumatoligist will help to eliminate inflamatory diseases. Keep a journal of her fevers (Time/Date, Temp. and Duration) along with any other symptoms during her episodes, as this will be helpful information to her Dr.

I am a huge advocate of kids seeing an ophthalmologist post KD and am glad to read that your daughter has been checked. Wish this was standard for all KD kids.

Sounds like your daughter is in good hands.

KCLP

cedarsfall
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Re: Tell me your lasting affects from KD

Post by cedarsfall » Tue Oct 11, 2011 12:30 pm

thank you kclp, i will do just that.
i appreciate your information.
i also agree for children to have their eyes checked post kd. ours was a standard appointment and not intended to be checked in regards to kd.

although, once this was found, we were advised that, i believe she said, only 2 children developed eye problems as the blood vessles become inflamed throughout the body from the kd

thank you again

cedarsfall
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Re: Tell me your lasting affects from KD

Post by cedarsfall » Tue Oct 11, 2011 12:34 pm

i mentioned 2, from what i understood, the ones that had eye problems actually had before pictures and were able to take after pictuers and noticed the artery in the eye.

juliagould
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Re: Tell me your lasting affects from KD

Post by juliagould » Wed Nov 02, 2011 10:09 pm

I was diagnosed with KD at 8 months old in 1993, I am now 19 years old. I've had problems with my joints in the past but I had no idea they were related to KD. I live in Newfoundland, Canada, which doesn't have a whole lot of medical information and it took a while for them to diagnose me, so I am unaware if any of my problems are related to KD or not. When I was around 4 years old, my knees were tested because I couldn't run very fast and couldn't keep up with children my own age. During puberty, my bones wouldn't grow as fast as my tendons and caused my hips to be displaced and it was very painful. Again, I have no idea if this is related to having KD or not, but many people on this thread are mentioning joint pain and it has made me wonder. I have always experienced chronic fatigue and was never interested in exercise or sports due to not being able to keep up with people my own age and lack of interest. I was never overweight in my life and still am not, but I just have weak joints I guess. I have a lot of hip pain and knee pain after I finish working, which involves standing up for around 5 hours, and it often carries over to the next few days. This happens every time I work, luckily I am only working part-time. I've also struggled with depression, panic attacks and anxiety, but this is in my genetics as well. I am quite irritable, always have been, and am known for having many mood swings. I've always thought of these little problems as minor inconveniences, but now I am wondering if they are a result of having KD as a child.

I also have had a bad run of it, if that's relative to anything. From what I remember being told, I had an aneurysm, a heart attack, and had to get a blood transfusion as well as a hemoglobin transfusion. I had no immune system during the run of the disease and had to be quarantined. I had to get echo cardiograms every 3 months, then 6 months, then every year and then every 3 years up until I was 12 years old as I was diagnosed with a heart murmur until then. I don't know very much about the disease and I could have messed up the details from being told about it so long ago. I'm happy to find a community to talk to about this as I have had no one to talk about it with, and I am very curious and want to know more about this strange illness.

jaglhcaz
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Re: Tell me your lasting affects from KD

Post by jaglhcaz » Sat Nov 05, 2011 8:28 am

My daughter will be 21 shortly. She had KD when she was 4 .... blew all the stats out the window. White, german/irish descent ... girl. Initially caught at the children's hospital, by the time diagnosis was made, she could not hardly walk .... there have been no concrete issues since then, however, these are some of the issues that she has been having since her early teens.:
The complications we have experienced since are :
In high school, got up to go get a drink of water and fainted .... ER, they thought she was trying to lose weight as a teenage girl will do, but not the case, ended up at cardiologist, did all kinds of tests ... nothing definitive.

Gets every sinus infection/strep/that comes down the pike.
getting tonsils out in a few months in hopes that some of this will stop. Probably should have done it years ago.

she really feels her system has been compromised, which seems to be true.

we are now experiencing periodontal issues, which the periodontist says could be related to KD .. has anyone else had these issues?? She has always taken care of her teeth and gums.

It is still such a misunderstood disease ... and we don't know what is coming down the road as a result of her contracting KD.

jaglhcaz
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Re: Tell me your lasting affects from KD

Post by jaglhcaz » Sat Nov 05, 2011 8:47 am

Wow ... the "stuff" I didn't think about.

she developed a vast amount of allergies at about 14 .... melons, avocadoes, nuts ... no food allergies in either side of our family.

chronic fatigue.

headaches ... debilitating ... no history of migraines in either side of family.

mood swings ... definitely ...

started in teens ... but now almost 21.

presently dealing with periodontal issues .. has anyone else had issues there?

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Sat Nov 05, 2011 4:38 pm

Ages 19 -20 -21 were the worse for the mood swings and misbehavior-- and ME not understanding.
She kind of got her life straighten out after that though - she went off of zyloft about that time and when on to protazc, finished college with straight As like she had always done - degree in biology/chemistry and special interest in birds.

Then she decided to become a nurse, so she worked part time at Dow chemical environmental lab as she took a few pre-nursing classes. At age 27 she was accepted into an accelerated nursing program , after the third Hep B she became stiff again like she had been basically all her young life, only much worse, and SED rates soared again. Shortly after that she was talked into a flu shot at her work, and she began to cycle (as in bipolar mannias and depression) but more into the highs and not any of the depression. She could not sleep for long periods of time.

I dont' think it was JUST the protzac -which is bad for bipolar because if you cycle into the mannia phase, protzac will keep you from every coming down to a normal. ----- it was also the immune shots that got the SED rates sky high and cycling into even more extremes. I feel that we would never have known it was bipolar and continued to live as she had been if not for the vaccines making it worse. She finally had a bad spell were she went psychotic and cut herself thinking there was botworms under her skin, she dug out a pretty deep hole in her hand that later they had to go in and operate on to get it cleaned out. Pain did not stop her from cutting herself, but --- her legs killed her (can you believe that?). She laid in the hosptial bed all day, all night, all day again paying no attention to her cuts but cryring, complaining , withering and wiggling from those hurting, cramping legs of which they did nothing.

She is now on Lamitical --- but there were other drugs along the way to help her to where she is now which is better- thriving in fact, and working happy as a nurse. The lamitical is they said a mood stablizer, but I know it is also the best of the seizure medicines. I suspect that it is seizures at a cetian part of her REM sleep that kept her from sleeping--- but it is for a fact a mood stablizer too. I know this from my son's experience with it .

Allergies - She has bad hay fever in the fall, and to cats, always has bad colds, sinuses, weak stomach, acid reflux
She also has that thing were they clench their jaws at night/grinds her teeth. She has beautiful teeth though - except the grinding is starting to show making one side lower than the other when she smiles.

juliagould
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Re: Tell me your lasting affects from KD

Post by juliagould » Mon Nov 07, 2011 4:59 pm

More research should definitely be done on the lasting symptoms of KD, my eyes are opened because of this forum. I've always had these problems and wondered if it were normal or not, and now I'm thinking it's from the KD I had as a child. I've suffered from headaches and migraines for a while and they're steadily increasing as I get older, however they do run in my family. I also have depression and anxiety but that runs in my family as well, but I'm thinking that having KD didn't help.

Does anyone know if KD can be passed down genetically? I've been trying to find information on it but no luck. I'm just wondering if I were to have a child, would it's chances of having KD be increased because I had it as a child?

VroomVroom
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Re: Tell me your lasting affects from KD

Post by VroomVroom » Fri Nov 11, 2011 10:03 pm

liquidambar wrote:Stuff
I'm going to say some things here, and I'm really not trying to be rude or inlammatory by saying this, but quite frankly you have no idea what you're talking about on just about everything you've said in this thread. I'm serious. You're not only spouting off half-baked personal conspiracy theories that you developed on your own without any medical backing, but you're also giving some really dangerous advice.

First off, some medical corrections for you:

* Tramadol can put some people into seizures, but it has nothing to do at all with its action as an opiod pain killer. Tramadol also has a serotonergic action, and this is what can cause convulsions, but it will only do so in people highly prone to convulsions or someone that is taking a ludicrous amount of it. Basically speaking, the people that jerk and twitch from Tramadol are the people trying to get high off of it, and frankly it's a terrible drug to abuse for just this reason. It has killed people in the past doing just this. Furthermore, if the serotonergic action of Tramadol was enough to put your kids into convulsions then so is the Zoloft and Prozac, and if so your kids have no business whatsoever being on an SSRI if prone to seizures.

* SSRIs like Zoloft and Prozac are not "bad for bipolar because if you cycle into the mannia phase, protzac will keep you from every coming down to a normal". The reason that treating bipolar disorder with an SSRI alone is a bad idea is because it only treats one half of the illness - the depression. You see, you have the wrong idea about bipolar disorder entirely. It's not an illness with two different points on the same axis, one being mania and the other depression and the patient falls somewhere in the middle. They've realized now that bipolar disorder is comprised of two independent axes that are unaffected by each other. It is entirely possible to have a manic phase coincide with a depressive phase, and this is honestly the most dangerous situation for a bipolar to be in when it comes to suicidal risk. They call it a mixed episode. Serotonin is not linked to mania the way that dopamine is, so taking an SSRI will NOT keep you manic, but something like adderall, ritalin, or even Welbutrin can do exactly that.

* Most mood stabilizers are also anti-epileptics, but that doesn't mean that seizures are causing the bipolar issues at all, and in fact, I'm willing to bet that they aren't. Anticonvulsant drugs can work on some bipolar patients in part because the bipolar malfunctions "reside" for lack of a better term to a certain degree in the temporal lobe, just the same as epilepsy. However, just because aspirin can be used to treat heart disease and a headache doesn't mean that heart disease is the same thing as a headache, and it's the same thing here. Epilepsy (as far as anyone knows at this point) has almost nothing in common with bipolar disorder outside of the fact that anticonvulsant medications can work very well with some bipolar patients, but just to prove my point here I will point out that lithium is still the gold standard most effective bipolar medication there is, and it doesn't do a thing to stop a seizure. FYI, the current line of thought Re: bipolar disorder is that it is a neurotoxic disruption with the way that the brain handles dopamine, and a lot of things play into how severe the episodes are, from diet to sleep to changing of the seasons. Finding a bipolar patient that's had a seizure without the aid of a drug causing the seizure is quite the rare find.

* A seizure is not caused by inflammation of the blood vessels. At all. A stroke can be caused by this, but not a seizure. This quote right here is completely full of nonsense from start to finish:

"What does seizures of the brain have to do with the heart? Well both brain and heart are in the body and what is happening to the brain's blood vessels is also happening to the other blood vessels of the body wether it is in the kidney, heart, muscles, pancreas or thyroid. Also- some seizures are brought about by a heart not working properly!"

A seizure is not going to be brought on by the heart not working properly. That's not how it works. Furthermore, both brain and heart are in the body, and both brain and heart are being affected by shared blood vessels, but you know what else is in the body? The liver. You know, that same liver that is being hammered by your ketogenic diet. Atkins is a far cry away from being anything near healthy for the liver. Short of chronic alcoholism and hepatitis I'm struggling to think of anything worse for the liver, actually. Frankly I wouldn't trust an epilepsy study from 1930 as far as I can throw a person, John's hopkins or not. You Atkins/no carb people always tend to take your diets to religious levels, and suggesting that you put a child recovering from KD on a no carb diet is about the most dangerous piece of medical advice I have ever seen. These kids need a balanced diet in order to recover, not loads of protein and fat with no sugars to back it up. That's a great way to kill a kid.

And one more thing: Kawasaki Disease is not a Mitichondrial disorder under any definition, no matter how loose. Please stop playing doctor by connecting the dots between your husband's illness and your children's kawasakis just because it seems to make sense to you. There is no medical backup to your claims whatsoever, and passing personal theories along as fact is a great way to spread rampant misinformation that could very well be hurtful to a person's progress.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Sat Nov 12, 2011 10:09 am

Dear Vroom Vroom;
I was wondering where and what the "House blog" was leading up to. I thought it might involve me - but being a humble person, I told myself that to think that, might make me ego central or paranoid - but I guess not.

Vroom Vroom - A brand new member! (?) Sure you are! And as a brand new member you looked all around, and zero- ed- ed only on me! You picked out just my comments, from beginning to end; these comments of mine - of my personal experience - and out of all the other comments I drew your interest??!!!!

I feel honored, since there are tons and tons of other stuff to pick from here! Why, thank you!

You not only just picked on little ol'e me, but as a brand new member - you are also different for the rest of the human race (most new members are polite, timid for a while, and do not come wading in with fist flying).

You also seemed to have done a very quick study on bipolar, and seizures. Good for you - but you have only skimmed the surface, you need to dig deeper. Don't worry about it right now though--- you have plenty of time later on down the road when you really have to be -- people get better at the deeper studies, and able to understand them, once they are emotionally invested, and personally involved.

I could go point to point with you but there is no point, since you made so many of them. So, I will leave you with just arguing only one of the many points you made;

YOU SAID: "A seizure is not going to be brought on by the heart not working properly. That's not how it works."

Here you go, VROOM VROOM (sure you are, snicker, ha, ha)
Do Another quick study: Tons of stuff on seizures and hearts, not hard to find.

http://www.ehow.com/about_5049916_heart ... zures.html
http://heartdisease.about.com/cs/genera ... eizure.htm

and on and on and on. But being such a quick study I am sure you can find more all by yourself. Like I said they are easy to find.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Sun Nov 13, 2011 11:24 pm

You also made another point that I was playing doctor?????
Most doctors don't have a clue, so I am ahead.

You said: " Kawasaki Disease is not a Mitichondrial disorder under any definition, no matter how loose."

http://circ.ahajournals.org/content/84/2/625.short Altered lipid profile after Kawasaki syndrome.

Mitrochondrial IS where the METABOLISM of lipids takes place!

"Lipid metabolism is closely connected to the metabolism of carbohydrates which may be converted to fats. Since my family is having trouble breaking down complex carbohydrates we by passed it by reducing our consumption.

Nope, this diet is not my religion, But I am not too lazy to get the book, skim through it, read the first two weeks worth of menus and recipes, beg, plead, and talk my family in to at least trying the first two weeks,getting the stuff, and relearning to cook.

Those first two weeks rolled into the next phase which were less intense. Along the way we picked up some good habits -like eating slow release carbs - like steel cut oats, whole grains, chick peas, and the like while learning some bacon and eggs are not our enemy - it is white flour, and sugar.

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