I have been doing so much research online and my family doctor does not seem to...

I have been doing so much research online and my family doctor does not seem to be listening to me.

My son who is currently 9yrs old, had KD in June 2013. Thankfully his heart was fine afterwards. But he has never been same child since. He is an aggressive and violent boy, highly strung, tense, obsessive, bad tempered. It has escalated as the years have passed and I am now at breaking point and don't know what to do.

He has been attending a child psychologist here in Ireland but it hasn't helped. The psychologist was unaware of what KD was after I told her that he changed straight after his KD diagnosis. What do I do?

16 comments
  • Sarah Freeman, where in Ireland do you live?

  • I'm following this because we find ourselves in the same boat. We need to do something - anyone interested in reaching out to dr Jane Burns to see if we can get tonight people to warrant a study? I read way too many of these posts and am so dejected when our doctors look at me like I'm crazy. It's demoralizing and painful to watch my only 3 year old struggle with his emotions and behavior.

  • My son changed after diagnosis. .he was 4, now 16...he sees a psychiatrist as well as therapist and is medicated as well. They firmly believe that kawasakis had something to do with his behavior and severe depression. It has worsened with age....the above link is what they were basing there diagnosis on

  • My son had this at age 3 hes never ever been the same hes close to 18 and never was again the happy little guy i once knew dr say its trauma but he would get over it no he hassent at all his bone are horrble he never sleeps and is always depressed very sensitive person hes going in counseling always and no one seems to have an answer to anything ive giving up on dr they hit the teenager years and they just say ohh there is no side effect to that .i dissagree i had to fight for an ultrasound on his heart last year he has arthritis at the age 3 and current sleeping disorders fiid issue always seems to have a sinus problem still has a rash on his chest fingers and feet still Pell but no answer at all

  • Have you all had more than one follow up regarding the KD? My son was in hospital for a few days, had his heart scan and all was fine.we have never heard another word since then? Anytime I have mentioned KD as a cause for his behavioural changes theyve laughed and said it only affects the heart. But I have read so many conflicting stories. What do I do? Where do I go from here?

  • I'm living in the south east of Ireland x

  • Get another psychologist if possible

  • My cardiologist in Houston's Texas Children's hospital mentioned she was currently running a study about behavior changes post KD. My daughter was having mild changes, but luckily has outgrown it. I liken it to PTSD. She was 6 at diagnosis, so remembers it well and writes about it often. I think that helps her express her fears and anxieties.

  • It's so sad to see so many people affected by it long term, yet no definitive answers

  • Your story sounds exactly like mine. I just kept notes so I could keep it straight. Over time you start to doubt yourself and if you have notes you can go back to your facts. I just gave up on 100% being able to identify a cause and started trying to see what we can do going forward.

    I spent some of my childhood in Cork! We still have some friends there. I can see if any know a good infectious disease doc or rheumatologist. I will also let you know what we find with our recent round of test results.

  • Sarah Freeman I spent some years in Cork as a child. See my other post. Your son's story is so similar to my daughter's.

  • We are right beside Cork, in Waterford. Yes please do, as my own family doctor has no information for me and the psychologist never even heard of KD until I gave her my son's medical history

  • If your still having an issue ask your doctor for a play therapist

  • This is exactly what has been suggested so this is our next step. I'm just drained from it all, nearly four yrs later and things are progressively getting worse with his personality issues

  • Yeah play therapy is the best thing. My brother recently had something horrible happen to him at school and this is one of the things they are going to do. Play therapy is a way for children to express there emotions through playing