Tell me your lasting affects from KD

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

Post by Momcat » Mon Nov 14, 2011 2:43 am

Good Luck with that Vroom Vroom, you will mostly likely just upset her more and she will rant on about other odd connections and relatch onto those cute little mitchondria. We all tend to get the shallow rantings if she is angry about something we have said. But if it all means it is solved in her mind we can let her thinks so. Some of us have been talking about how dangerous she could be to other new members checking in here, those who have NO information and they hit her information first as she likes to hear the sound of herself. I think the word "logical" is too strong, even for her. This is also something she cannot avoid or detour from. She will promise to back off, but comes back with both barrels as soon as everyone thinks she has finally taken a wiff of oxygen. She must feel lost with whatever she is engineering as her who purpose in life regarding KD ---- it isn't panning out scientifically whatever books she is comparing them to, You haven't even heard 1/2 of what she believes yet.......it does get interesting, even though many of us wonder how she even get so much of it related in her own mind.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Mon Nov 14, 2011 11:31 am

Momcat again talks in front of me, about me; and as usaual puts me down.
But she never addresses the facts I put out there. She rather slur me than be logical. I have tried logic and she (see I can do that too) reverts to slurs.

Directly to you Momcat I will say that I was nice with you at first Momcat, but you continued to slap me around, so I finally told you what you were -- if that is ranting VROOM VROOM - MOMCAT then so be it.

I must say that I like the continous hints that

"We" talk about her, "We" discuss her all the time. It reminds me of highschool little clicks. Rather juvenile, really.

But not a word do I hear about lipid metabolism -- just slurs like "cute little mitrochondria and just how dangerous I am.

mdodson03
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Re: Tell me your lasting affects from KD

Post by mdodson03 » Tue Nov 22, 2011 2:39 pm

I had KD when I was 4 (now 32) which was before the IVIG regimin that is given now. I was basically pumped full of aspirin and told to wait it out in the hospital. I'm not sure what constitutes for lingering affects as I have very limited memories preceding KD. I guess the prolonged high fever "fried" my noodle in a few places. I will say that my extremities (especially my fingers) peel occassionally and I do have quite a bit of nagging joint pain, but nothing severe and I constantly have cold fingers and toes (even in the middle of summer). And who's to say that isn't me just getting older. My biggest remnant has to be the cold sores. Anytime I get a slight fever two or three cluster up out of nowhere. I never had those before KD. My skin is also a lot more prone to drying out than most anyone I know. I have been reading on these forums about how KD could potentially lead to behavioral issues, but I haven't done any research on the topic yet. But I will say that I was diagnosed with Bipolar II about 7yrs ago. Depressive and passive/aggressive behavior run rampant in my family though, so that too could be chalked up to hereditary predisposition. Sorry I couldn't be more helpful, but there are so many biological variables as well as the amount of time that has passed since I had KD, it's just near impossible to single out some of my ailments to this disease. I wish more information/progress has been made, because as a parent of a small child, my mind instantly goes to KD when he shows what could possibly a symptom.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Tue Nov 22, 2011 6:36 pm

mdodson03;
Thank you for your input.
Bipolar has never been dignosed in my family. I mean never, never, never, never!
I think there might be some really mild symptoms with my mother, her sisters and brothers. --- but then again it could be just strong personalities forged from living on Horse Lick Creek, wearing clothes made from feed sacks, no running water, no electricity. And a grandfather that owned 1000 of acres, ran the whole community, ran the grist mill, the saw mill, kept the school going,and made sure all of his descendants had the fire of ambition. I admit that there was some melancholy in my mother, and my uncle (black sheep of the famiy) will make a great deal of money in his trucking business and then blow it on - even going into debt in buying ever piece of heavy equipment and barns for them.

But full blown bipolar like my daughter - no, I don't think so. I look at my daughter's personality growing up , and It was similar in my mother's family temperment, but there was some extra anger in there tooo. Or things aggravated her so much that I really could not understand. She could not let things go, either. An example was the family going for a walk on a nature trail, we forgot her camera, and she made the whole nature walk - a walk in Hell. Then there was the time that her brother fell in a mud hole in a walk up Horse Lick Creek, she got mad att that - I have a picture of her holding a whole hand full of blue bells, and she was still mad. Those are just two examples.

When puberty set in - I promise you there was nothing like that in the whole family. I never witnessed anyone as dark and troubled, and full of loathing toward me who had nothing but love for her, then she would switch to the life of the party. She would talk me to death, talk more than I thought I would ever want to listen. Then in her mid twenties after the Hep Bs and flu - that was something that was never ever witnessed in this family ever, ever, ever.

Cold sores;
I had one ever year, in the fall; on my chin just about time school pictures were supppose to be taken, and then about the sixth grade I stopped having them. But then every body that went to our little rural schoool had them too. It was rather common thing.

Another thing that my daughter had that her father's sister, mother and father had a lot were warts. They all could keep warts for a good long time. They all laughted at how the trip to the ocean would get rid of them. My daughter has had warts on her fingers ever since she was a baby, and constantly doctoring them. Poor thing.

Someone did link us to a study of something to do with the brain and Kawasakis. I will try to find it.

Auto immune diseases; Yes, there are plenty in my family. RA in my cousins starting at only six years old, MS in another cousin on a differnt side, Parkinson disease at a young age in several other cousins, lupus is there too, as well as some severe obeisty. On my husband's side lots of cousins at an early age and siblings too - do have immune problems; there is a case of mythenis gravis, schizophrena , as well as severe obeseity too. All in younger adults of my family, but not so much in the older adults.

I could just look at my family, but I am not one that can ignore my neighbors, communitiy, Sunday School class, church members, former school students, and friends. There seems to be no end of some kind of auto immune disorders in so many people. I am living between two neighbors that became diabetic at a young age - they are not fat, but very thin people. Diabeties is also an auto immune disease. In church a man I have known all my life has slowly subcomb to lupus - but his skin is blue or some shade of purple that gets more purple when it turns cold.

For that matter, since when does it become lunch time at school, and a third of the students have to leave early so they can drop by the nurses station to get their insulin shot ? At least that was my observation very recently.

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Tue Nov 22, 2011 7:30 pm

Here is that study:

http://www.biomedcentral.com/1471-2431/5/14

Here is the summary:
"Summary
In conclusion, we have shown significant behavioural sequelae can occur following acute Kawasaki disease. Therefore, the paediatrician should bear in mind the potential need for long term follow up of Kawasaki disease patients in clinic even in the absence of coronary artery aneurysms. Parents can be told that behavioural difficulties experienced may be within the normal sequelae of the disease process and they can be reassured that they do not appear to affect school performance to any significant degree. However, a few probing questions should be asked to flesh out other possible causes before any difficulties are attributed to Kawasaki disease. The paediatrician should consider referral to a clinical psychologist where necessary. This may indeed prove to be a common requirement in long-term management, when it is considered that 40% of the KD group in this study fell within the clinical or borderline-clinical range for internalising problems.
Future research should examine the behavioural difficulties in greater detail, employing formal neuropsychiatric testing. Additionally, further research in this area is required to rule out other possible causes of behavioural sequelae. In particular, standard treatment with aspirin and intravenous gammaglobulin should be eliminated as potential aetiological factors

liquidambar
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Re: Tell me your lasting affects from KD

Post by liquidambar » Tue Nov 22, 2011 7:33 pm

mdodson03;
And now I would like to know if you would share what are your treatments you are using to controll your bipolar?
And would you be kind enought to share with us how you are doing with it too?

Very Much Thanks

mdodson03
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Re: Tell me your lasting affects from KD

Post by mdodson03 » Tue Nov 22, 2011 8:03 pm

liquidambar wrote:mdodson03;
And now I would like to know if you would share what are your treatments you are using to controll your bipolar?
And would you be kind enought to share with us how you are doing with it too?

Very Much Thanks
Not to be rude or cryptic, but I'd rather not discuss my psychological treatment in a public forum. I will say that I see a psychiatrist on a regular basis as well as take prescription medication.
Thanks for the link to the study. I'll definitely get a little deeper in it in the near future.

yen
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Re: Tell me your lasting affects from KD

Post by yen » Mon Dec 05, 2011 5:59 am

My daughter was diagnosed last sept 22, 2011 suffering from kawasaki disease. IVIG was given to her at her 14th day of her fever (yes, it was a late diagnosis) We are so LUCKY, FORTUNATE and BLESSED, her arteries now are normal.

I'm just wondering, her toes, fingers and lips are still reddish until now, especially during night time and subsides during daytime. And when i touch and feel her toes and fingers, it's a little bit hot.


Is it ok? Do i have not to worry at all?


please..
anyone there can answer me, because i'm starting to be a paranoid mom.

Lety Miranda
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Re: Tell me your lasting affects from KD

Post by Lety Miranda » Sun Dec 11, 2011 4:13 pm

My daughter Lety was diagnosed with KD at the age of 7 (in 2004), now she is 15. She was treated with IVIG, esteroids and then a lower dosis of aspirin for one year; everything was fine until 2 years ago that she started having many problems. She has had joint pain (mainly knees, ankles and wrists) he started loosing hair 4 months ago ...Now she is having head-aches, stomach aches, nausea, and feel sick; she has had also chest pain and the last three days she had low fever, the last bloodtest taken yesterday shows CRP elevated (26.0 mg/L), such as it was when she was diagnosed with KD. Her cardiologist says she's having a vasculitis again,(the same as in KD) and we are waiting for the results of many bloodtest taken to determine if there is a problem with her immunological system. I would like to know if there are more KD patients who are suffering the same long term effects. If you speak spanish please let me know. We live in Mexico and I just have communication with a mother of a girl who was diagnosed with KD and sometimes we share information about the effects on our daughters.

kaw
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Re: Tell me your lasting affects from KD

Post by kaw » Wed Dec 28, 2011 9:12 pm

Daughter had KD just before her 4th birthday. She is 8 1/2 now. Constant lower leg pain. Stomach aches. Refractory asthma developed within 6 months after hospitalization for KD. Stunted growth (height). Anxiety. Now we are dealing with diffuse swelling/weight gain throughout her body that has just started in the last 6 months. Cortisol levels are "normal." She looks like she has Cushing's disease, but apparently doesn't given the negative cortisol findings. Would be interested in anyone else who has seen this.

lharper2006
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Re: Tell me your lasting affects from KD

Post by lharper2006 » Thu Dec 29, 2011 2:43 pm

My youngest son who is now 28 yrs old, had KD when he was around 2 yrs old. He woke us in the middle of the night w/projectile vomiting and was so hot you could barely touch him. We immediately took him into hosp, his temp wasf 105.6 so they immediately put him in an ice bath (oh, I felt so bad and so helpless) eventually got his temp down to 104. At first they thought he had spinal meningitis so did a spinal tap (again helpless) but it was negative. His next symptom was he broke out in tiny red dots all over, his lips became extremely cracked but of course this was thought to be residual of high fever. Next, he began to peel on his upper body that would leave his flesh like raw meat, they started him on steroids, next he peeled on lower body. Drs still had no diagnosis, he was being given the steroids, antibiotics and pain medication. After the 8th day in hosp, fever was down to 101, skin was still bad. this day there was a resident Dr who had been checking on patients and he came to sons room and asked if he could ck on him and ask me some questions. after about an hr he left but 30 min later returned and said, 'there is this girl a few rooms down, she is 8 and has the same symptoms your son has but she is on the mend and I was wondering if I could ask you a couple more questions.' His next question was unusual but it was - have you cleaned your carpets recently. My reply was, yes just 10 days before son became ill. Turns out so did this girls family. He told me he thought both my son and this girl had KD, which I had never heard of - he went on to tell me (at that time - 1985) drs beleived it was from a carpet mite infected w/this virus and cleaning my carpet might have stirred the dust and mite and son possibly inhaled it. I don't know - but son got better after another 6 days. Later, his primary care Dr had done some research and read about possible redsidual heart problems so son had test' done but showed he was fine. He is 6'5 now and 240 ibs but the only health issues he had in his childhood were that he at age 9 had a bone tumor below his knee and then at 12 they discovered another on his middle thigh. the 1st was removed w/surgury but 2nd we were told to keep eye on it. Has never bothered him till last 1 1/2 yr but unfortunaely he has no medical so he cannot get it checked. I noticed some parents saying their children have behavorial issues - my son did, hyperactivity. He is pretty big and Dr said could of been from steroid treatment he rec'd. he gets kidney infections occasionally and was diagnosed w/signs of early glaucoma. I don't know if any of these things are related to KD but I would be interested to know and am glad i found this website to share his story.

ktketner
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Re: Tell me your lasting affects from KD

Post by ktketner » Tue Jan 10, 2012 3:37 pm

I am nearly 21 years old, I was diagnose with kd 16 years ago. I didn't have any lasting effects aside from a lack of energy that lasted several months until I developed an appetite again.

8 years after my diagnosis, I developed chronic daily migraines that I've had since I was 13 and still have today.

Please see my discussion "KD and late onset migraines" for more info.

mrsshimmy1
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Re: Tell me your lasting affects from KD

Post by mrsshimmy1 » Sat Jan 14, 2012 8:11 pm

my daughter was diagnosed with KD in July 2010 when she was 6y.o & was in hospitsl for 10 days.
To date she still seems to have a very low immunity & seems to get sick far more than her other siblings.
Her heart has passed all the tests & she has been discharged completely from the infectious diseases department & the cardiologists at the hospital where she was treated with IVIG on the 7th day.
She definately needs more rest than her brother & sister & isn't nearly as active either. I find her to be more fragile. Her lips get very dry & cracked easily and she still suffers joint pain (less often now) in her knees, legs & sometimes around her ribs or armpits. She seems to quickly get run down and catches anything from a cough/cold to viruses more than she did pre-KD.
I'm not sure if I am being over concerned but I often look at her & worry that something has been missed by all the medical practioners or there maybe something else wrong???
Thanks for such an interesting post & I would love to see a chart with all the info on it.

phorne01
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Re: Tell me your lasting affects from KD

Post by phorne01 » Tue Jan 17, 2012 7:50 pm

My son was diagnosed with kd at age 3 in 1999. He is now 16 and has had no cardiac effects, but anxiety, and was diagnosed with Aspergers at age 10. When he had kd he had ivig and when he came off of the ivig he had an extreme headache and vomited . Then he was put in icu until he stabalized. They never did a CT Scan, but from then on he became very withdrawn. As a teenager he is well behaved he just does not socialize with other kids his own age. Let me know if anyone else has this similiar situation. Thank you.

Aprilc520
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Re: Tell me your lasting affects from KD

Post by Aprilc520 » Thu Feb 02, 2012 9:33 am

My daughter was diagnosed in October 2009. She had a fairly mild case but was not diagnosed until the 11th day and she was treated with IVIG and stayed one night in the hospital. We were very lucky that there was no damage to her heart and we continue to see a pediatric cardiologist. Since KD she has constant joint pain. It seems to be mainly in her knees and feet. Sometimes she cries so hard with the pain that it's almost scary. She also has stomach issues. She is often constipated no matter what she eats. I try to push the veggies and fruit on her as much as possible but it seems like no matter what we do she still has problems. She sometimes just cries with stomach pains. She is a very sensitive child but gets very irritable. None of these things were problems for her before KD.

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