Behavioral problems after KD

General discussion regarding Kawasaki disease
Sara13
New Member
Posts: 4
Joined: Thu Aug 04, 2011 2:43 pm

Behavioral problems after KD

Post by Sara13 » Thu Aug 04, 2011 2:55 pm

Hello, my son had KD at 17 months old and he is now 4. He was treated on the 10th day and luckily had no problems after. He has recently been referred for assessment because he goes through phases of very compulsive behaviour or has violent temper outbursts - in between these phases he is a happy, boisterous, cheeky sometimes bad tempered 4 year old boy, but certainly nothing I would worry about. When he was 2 a lot of people suspected he was autistic but then he seemed to stop a lot of those behaviours. He is currently in speech therapy as he has extremely delayed speech - he is not dispraxic, he has above average language and the muscles in his mouth/lips/face are fine so there is no obvious cause for his speech problems but he really is difficult to understand. He has been in and out of the hearing clinic as he behaves as a child with hearing difficulties does a lot of the time, but his hearing is apparently fine. I know it sounds silly as I have never read anything about KD children having subsequent behavioral/development problems but I just wondered if anyone had come across anything similiar. THere seems to be no cause for a lot of his problems so I have always had a thought in my head that maybe KD effected something beyond my comprehension. Any information really would be greatly appreciated. I am waiting for my appointment with the pediatrician, but because so little is known about KD I would rather go to the appointment with information, if there is any.
Thankyou so much for taking the time to read this.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Thu Aug 04, 2011 11:40 pm

Bipolar; (Anger, Mad, depressed), then happy, happy, joy, joy, Up, excited, fun to be with and then back to mad, aggitated, angry, depressed and then back again. That would be my daughter, I noticed something after Kawasakis, it just took two decades for me to figure it out.

She was valdictorian of her class, won the state education award for best writer of the year - and she was in speech class in the first grade ( did not pronouce the ch correctly). I have trouble understanding her sometimes, but she was never speech delaid like my son.
By the way if your son does have a severe speech problem the school system will not help - they only take the ones with minor problems like my daughter but not my son.

We never ever did think our daughter had autism.

Which we could not say the same for her brother.

Autism is a spectrum
Mild is Aspergers no speech delay, no menal deficits
Mild is PDD-NOS pervasive developmental Delay not otherwise specified - there is speech delay, there is mental deficits. Example my son has a deficit in math but he was still able to work hard and pass his algerbra class in college. Yes speech delay and even today he is a man of few words.
classic austism - you know it.

There are other problems that can go along with autism too, they can or they cannot
1.) Obssessive Compulsive behavior; example - my daughter checking her purse all during the last Harry Potter movie till she got on my last nerve, washing her hand till they bleed. or my son that if he touches something with his right hand, he has to touch it with his left to keep it all even, or lining all his toys up in a straight line, but never really playing with them.
2.) tourettes; Has to have two types of tics, one is movement like a head bob and then a vocal tic. Example my son snuffs his nose, body tic is the movement brings in the air, and noise tic is the noise it makes doing it.
3.)epilespy; seizures like falling down and jerking is easy but there are harder ones that are partial. Example standing in the middle of the room looking lost, walking and not stopping when they should, and so forth.
4.) Hyperactivity and attention deficit - Can't get the attention to read my son a book when he was small - and hyper - he moved without thought or real purpose. My daughter - I had no idea she had problems, always a good student, always sat and listen to me read but as an adult - one car accident after another - all because she was not paying attention - well it told the truth on her.
5.) schizophrena - hearing voices (Thank God this one has so far not showed up at our door), but I have no doubt it could, because itis all intertwined with this mess too.
6.)bipolar - Anger, hate seeping out if I entered her room, mad, depressed, wants to be alone --- and then ---- happy, happy, joy, joy, up, excited, motivated, love, great to be around --- and then ---- depressed, hate seeping out if I entereed her room, depressed, mad

and all very confusing.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Fri Aug 05, 2011 8:24 am

Sarah 13 you said you were getting your son assessed right?

There are several ways you can go.

1.) first the peds; They are not good at it at all, it is not their jot. Mostly no matter what you tell them on behavior - their job is to reasure.
For example: My son is really hyper and not paying attention.
And they will answser that it is like the early pioneers - you could not be too focussed or while you were watching a one thing like a rattlesnake, a bear would come and while you were watching a bear and a rattlesnake something else would come so attention deficit is were your attention is divided (It is not by the way, it is more when you are very tired and you are too tired to really rad that book, but you have to anyway, or clean that kitchen) so what they give them is an upper drug - which I am not knocking because it got my son through school and my daughter does not wreck her cars anymore. But my gosh they could not even figure out my son was having seizures and I was telling them.
But ped are not equipped to deal with any "real" behavioral problems. They are there really for ear infections, sinus infections, to listen to the heart and send them somewhere else if they hear a murmur, feel the belly and all in 15 minutes or less.

2.) In every county in America; the state and the federal government pulls their funds and has Early Child Develoment Centers.
The Health Department knows how to get ahold of these guys if you ask. And they are also probalby listed under your phone book if you know were to look. THey have professionals that give test and can assess your child; such as speech therapist, physcial therapist, psychologist (behavioral experts) and they even run a day care, that is fully equipped with physcial therapy toys and staff. It is free. It is for pre school age kids. I don't know if four years old are still included. I kept my child in untill he was six because I kept him out of school an extra year.

3.) You can also pay out of pocket (usually psychologist and psychiarist) do not want to deal with health insurance (a few do, but most don't) If you want to look you probably can find a psych that will take insurance. There are all kinds of test and it usally takes about three days to assess a child. I found a team of such psychs that included a medical doctor, a speech therapist, a couple of behavioral psychologists and a couple of people with doctors degrees in education, all working together in a big city. After three whole days of testing - they pinpointed that my son had tourettes (but totally missed the partial seizures) and they did not say he also had PDD-NOS (which he did)- but I imagine they did not mention the PDD-NOS because the schools at that time had already had it on records he had PDD-NOS.

4.) You could wait untill he gets in school and if he has a mild austism like PDD-NOS they will tell you by the end of the first of second grade. They may mention OCD (obssesive compulisve disorder) in thier assessment too. They can give you a label but not really break it down to what behaviors that label implies. And quite frankly after 30 years of it - I am still confused with the psych labels. I think they do it on purpose to make their jobs require a degree.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Fri Aug 05, 2011 8:49 am

Sarah 13;

It is all caused by a damaged immune system.
A lot of people are trying to find help on their own since regular medicine has few answers.
But these parents have found a lot of answers that medical research has discovered but
Well medicine and research are finding some things but doctors are not being trained in it, yet.
I could not afford to wait around for these guys to get trained and plus it is not that hard to figure out.
A lot of kids are being found to have a mitrochondrial cytopathy. Their metabolism is messed up.

A lot of parents are finding diets low in carbs help.

The John Hopkins Medical University did a lot of research in all this and found Atkins diet of only 15 carbs a day or a low glycemic diet of the right kinds of carbs (slow releaase type) 15 to 30 carbs could be consumed a day. Some parent have found that getting rid of wheat or or milk out of the diet helps, and John Hopkins and a lot of research in that area are finding wheat is a problem, causing immune response that are many times undignosed celiac disease.
A lot of supplements are suggested and that is really hard, to know which ones matter and which may not be.
High B12 is found in the blood of kids with autism in medical hospitals involved in research in this area. That is because the energy cycle, the metabolism is messed up and the B 12 can not be aborbed properly. the parents are giving methyl B 12 that is the next step up in the cycle and can be more easily used by the body. Some are putting it under their kid's tongues, or buying suckers with it in it for slower absorption, or even giving vit B 12 shots. Then there are other things that are just as important and help the B 12 be absorbed and that is vitamin D, and vitamin C. Fish oils too. Medical test are showing L-carnitines levels are low too- that usually comes from meat - esp beef and lamb.
For bipolar they throw in the insitol (one of the vit Bs) . Not all vit Bs are good in excess. too much of one example niacin (pharma made niaspan) and it upset the energy cycle even more and can lead to perpherial neuropathy or as the Nattional Insitute of Health found out that niaspan caused - more strokes.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Fri Aug 05, 2011 9:11 am

And by the way anemia which is common in our kids ---
well it takes vitamin B12 to help absorb iron, but since our kids can't use the regular vitamin B 12 in its regular form that is the reason they are anemic.

Ask any woman that is anemic and her doctor not only suggest iron but also for them to take vit B12 and vitamin C to help the iron be absorbed and used by the body.

Sara13
New Member
Posts: 4
Joined: Thu Aug 04, 2011 2:43 pm

Re: Behavioral problems after KD

Post by Sara13 » Thu Aug 11, 2011 5:48 am

Hi everyone, thankyou for your kind responses, I have just got my appointment through to see the pedeatrician in October which is great news. I'm in the UK so I don;t know if we will have different procedures or not. I just hope that they will listen to me and not have pre-concieved ideas as has been my experience at some of the other departments at the hospital!! Autism has been mentioned about Harry before, but he doesn't show some of his odd behaviours all the time...as he gets older they do get less frequent, I don;t know if this is because it is a maturity thing (which is what I'm hoping for) or because of things like his diet has totally changed...we have 2 allotments so we have significantly less processed foods in our diet. Also, we noticed a massive improvement when I quit work. But even though he is a million times better than he was when he does have an episode he really goes for it and the bigger and stronger he gets the harder it is for me to deal with it because when he goes he doesn't have any limits if this makes sense. He might have a normal 4 year old tantrum, and even hit me, but that doesn;t worry me, even though he is behaving in a difficult way he still has some sense of control and his hits don;t hurt...but when he has this other sort of tantrum where he is panicking over wanting to sharpen a pencil for hours on end, or having to go into every church that he sees or turning left instead of right, whatever it is, he has no control at all. Luckily this isn't a daily or even weekly challenge like it used to be so sometimes I think I might have imagined it all...but then something will trigger it all over again. Hopefully when I see the pedeatrician I will get some sense of moving forward with him and more understanding about his behaviour. I just wondered if maybe KD may have had some sort of effect beyond possible heart complications which (touch wood) he has always seemed clear of. Thankyou all again. I will let you know the outcome of his appointment. THankyou.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Thu Aug 11, 2011 9:09 am

Sarah;
I have heard that the UK health care actually has nurses that come to the house and does assessments for child development under the age of five????
Wether they (the nurse) would know too much about psych and tantrum - I suppose it would depend on how good the nurse is.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Thu Aug 11, 2011 9:14 am

Also;
Kids with atuism believe it or not do improve.
Mine did. Not to just small children to puberty but even in the teen age years and even into the twenties.
I am very pleased with my son, I could not ask for a more wonderful human being.
He is sensitive, caring, mows his grandparent's yard, goes to college, majoring in electronics, took a long time to get his diver's liscense but he does drive. He is not much of a talker, but there are times he wants to talk and it is mostly about spiritual stuff.
So it is not what people think, when they think of the profoundly classical autism.

toffeegirl
10+ Posts
Posts: 20
Joined: Sun Jul 17, 2011 6:04 pm

Re: Behavioral problems after KD

Post by toffeegirl » Thu Aug 11, 2011 7:24 pm

Hi Sara

British Study into Behavioural problems post KD

"The KD group was found to have significantly higher behavioural scores on the thought problem category of the CBCL compared with the sibling control group (P = 0.006). Thought problems reported included obsessions, compulsions as well as strange behaviour."

This is the bit that jumped out at me. This was published in 2005, not sure if there is more up to date info. I am also in the UK. Which hospital is local to you? My daughter is still having treatment at Alder Hey in Liverpool and we are due back next Monday. I have found the Consultants there to be quite helpful and informative so I can ask them if they are aware of any further information regarding potential behavioural problems......be interesting to see what they say :) Can't do any harm anyway.

TREE
New Member
Posts: 2
Joined: Tue Jun 14, 2011 9:16 am

Re: Behavioral problems after KD

Post by TREE » Fri Aug 12, 2011 12:00 pm

I am so thankful for this forum. It has validated my suspicions with my son's behavior issues....10 years later but at least it has helped us identify what we have been wondering for years and had absolutely no help from the medical community. Thank you all for your postings. I am wondering if it has become standard followup to Kawasaki's to have psychological evals .....if not, it should be, based solely on the postings of this forum. I am so glad I finally found this site!!!

Sara13
New Member
Posts: 4
Joined: Thu Aug 04, 2011 2:43 pm

Re: Behavioral problems after KD

Post by Sara13 » Sat Aug 13, 2011 3:19 pm

Thankyou everyone,

toffeegirl, that study is getting printed off and taken with me when I see the pediatrician...they might know about it but I'm not taking any chances. We live in York and to be fair, when he was under their care for the first year the people I saw were always kind but apart from scans for possible heart disease I don't remember ever discussing any other potential long term problems, or if the heart problems could return at a later date so when we got to our year anniversary I just relieved it was all over with. My GP have always been brilliant with him though which has been reassuring. How is your little girl? I'm hoping all is well. When you go on Monday make sure you know what questions to ask as I never knew to ask more than they told me, and when I look back I wish I had asked more. Let me know how you get on but I'll keep my fingers for you.

Liquidamber, we have a health visitor who does home visits and is the first port of call until our child is 5. My current health visitor is nice enough but I generally feel that she isn't hearing what I'm actually saying, but what she assumes I should be saying, if this makes sense. She did not know Harry until very recently and I don't even know if she's aware that when I turned to them when he was a toddler they sent out a behavioral specialist who said all sorts could be done to support us but then we never heard from him again and seemed to vanish. She thinks his behaviour stems from being a middle child, even though I have told her over and over again that his behaviour has vastly improved SINCE becoming a middle child, or rather, since I quit work early in my pregnancy. How old is your son now? He sounds like he is doing great.
Tree, I know exactly how you feel. If it wasn't for this site I'd be floundering around trying to piece together bits of information as it really isn't easy to come across and I would probably have convinced my self by now that there was absolutely no link whatsoever. Because children get KD at such developmental ages it must be near impossible to say whether it is from KD or they would have been that way anyway but with such volumes of people having similar observations and worries I am starting to think there must be something in it.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Sat Aug 13, 2011 7:18 pm

My son is 25.
My daugther who also had Kawasakis is 30. She was set back from her improvements in health by a Hep B and a flu shot when she decided to become a nurse.

toffeegirl
10+ Posts
Posts: 20
Joined: Sun Jul 17, 2011 6:04 pm

Re: Behavioral problems after KD

Post by toffeegirl » Sun Aug 14, 2011 5:38 am

I came across the study by accident looking for something else but think it makes interesting reading.

We are still undergoing treatment at the moment. Back in on Monday for a review but fingers crossed that they will not give her anymore IV :( She has had such a time of it, poor little sausage. 5 weeks in and still on steroids but it will all be worth it if we can get out of this with no long term heart complications.

We are still too close to the initial KD diagnosis to really notice any behavioural changes I think but I am concerned she will be affected long term. From the research I have been doing it would seem that they think it is to do with damage to the central nervous system which is affected when the disease damages blood vessels in the brain. At least, after wading through a shedload of medical jargon, I THINK that's what they are saying. This is of particular interest to me as Emily suffered from Aseptic meningitis during the IVIG treatment. From this laymummy's eyes it would appear to me that Emily suffered more cerebrally than cardiacally if that makes sense. Her symptoms and pain seemed mainly focused above the neck and although I have nothing other than my own brand of logic to go on I think that whilst it appears that she may have escaped cardiac aneurysms she may well see some other long term effects due to this.

I will certainly be asking the question when I go back in for our outpatients appointments anyway :) Let me know how you get on too. Be interesting to see if we get different responses to the question!

sharonblakey
New Member
Posts: 6
Joined: Wed Sep 21, 2011 4:26 pm

Re: Behavioral problems after KD

Post by sharonblakey » Wed Sep 21, 2011 5:10 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.

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Behavioral problems after KD

Post by liquidambar » Tue Sep 27, 2011 9:13 am

Houston Dentist:
Thanks for the information.

" 40% of the Kawasaki disease group showed elevated internalising scores in the clinical or borderline-clinical range"
" Three showed minor changes, possibly a resolving cerebral vasculopathy".

I am thankful that those in the study ---- were resolving.
But it certianly brings to light - what I already knew.
It seems to be a pretty hard , up-hill battle to make the medical field aware of this!
This problem cannot be researched untill it is seen as a problem, and so far it has been ignored.

Atypical Kawasakis maybe be more in the blood vessels leading to the brain than the rest of the body esp the chest region (thus not so much of a rash).

I feel this is what went on with my son. He now has epilespsy as well as internalizing - a mild type of autism.

But my daughter with typical Kawasakis - did not get off scot free either - now looking back I realize that there was a lot of obssessive compulsive behaviors and mood swings. I had a tendency to let it go since she did so very well in school, and she did do very well in school - she was "the" top student in her school. Lesson learned here: Just because a person does good in school does not mean they do not have a mental illness.

Could you please direct me to where you found this study????????

Post Reply