• I m so pleased that I found you guys We re in the U K and our now 4 year old...

    I'm so pleased that I found you guys!! We're in the U.K. and our now 4 year old son had KD in November. It was an incomplete KD presentation in that all the symptoms didn't occur in the time scale expected or in the correct order and so he was misdiagnosed on 3 separate occasions (a 'virus' due to his raging temperature and rash, athletes foot due to the red, peeling skin around his toes, and an allergic reaction due to the swelling in his feet). Our GP finally admitted that S may have had KD when I took him back to see her when I noticed the deep ridges on his finger nails and that some of his nails were falling off. Throughout that time my boy has had no treatment whatsoever and no blood test. Since we saw the doctor about my boy's nails we have struggled to get our GP to refer S to cardiology, she says that as his heart sounds fine (through a stethoscope) that she's confident he'll be okay and it wasn't a serious dose that saw him admitted to hospital last November therefore there will be no lasting effects on his heart. She had never seen a case of KD before and neither had the 2 paediatricians who saw him at the hospital about his swollen feet. Am I wrong to insist that we get S's heart checked? I read a BMJ article that says that all children with KD, whether complete or incomplete should be checked over properly and that has worried me. If anyone has had similar experience, please help. I'm struggling to convince the GP that an appointment in 18 weeks with a general pead is not good enough :(

    21 comments
    • Echo is one of important tools to determine if your son has KD or not. I will suggest your son to have an echo.

    • They must give your son an echocardiogram! My son had incomplete KD that was misdiagnosed and when he had his echo he had giant aneurysms in all major valves. If they still refuse I would suggest that you tell them to speak with the board of research for KD. Stay diligent. I will say a prayer. :)

    • If i had not been persistant, if i had not argued with the doctors all 3 times that i carried my grandson to the ER and the pediatricians office, he would be walking around with his heart condition and we would be completelu unaware of it.

      Your doctors work for you!. If they dont feel the need to take your concerns for your child seriously, find a doctor who will. Im thankful everyday that i followed my gut instead of taking their word just because they went to med school and i didnt.

    • Skip the pediatrician, child needs to see a Cardiologist soon !

    • Thank you everyone for your advice and support. It's so validating to hear that I need to trust my instincts and push for a cardiology appointment. I'm going to ring and try to speak to a senior partner in the practice today. I can't understand why the GP is being so difficult, she was really off hand when I said that I wanted my boy referred and then when we get the referral notice through it's for general paediatrics.

      Thank you all, so much xx

    • Good luck - keep us posted xx

    • Hi Netty! Same here :( We saw 5 GPs in our surgery and a&e (in 6days)

      We went through antibiotics and eye drops

    • Netty Jones I'm in Harrogate. I had a similar experience to you with Harrogate Hospital where they misdiagnosed my son over a 5 week period. It was only because he developed arthritis in his hands that we were referred to LGI. My son has 4 giant aneurysms which we still wouldn't know about if it weren't for the referral to Leeds. Please go back to your doctor and ask for a referral to Mr Wood or Marek Bohm at LGI who are rheumatologist. They will be able to then sort out other referrals for cardiology and hearing. With being in North Yorkshire, I don't know which provincial hospital you were treated in but please see about a referral to LGI as its the nearest centre with any KD knowledge. Please feel free to pm me x

    • Your child needs an echo get to the Gp and ask to be referred for a scan. Do not back down.

      We've just had the same fight and won. Although it took weeks. His heart scan is on the 23rd.

      We are also in the U.K. And i am ashamed of the doctors we've seen. I really am.

    • Kathryn Jukes

      Your son

    • So sorry to hear that

    • You need to delete the comment so it can't be used as evidence of premeditated murder - you could go for diminished responsibility

    • I've already warned them all I'm coming for them

    • Hi Kathryn, I was hoping that you'd respond as I've seen you post on Mumbler about Kawasaki in the past. It was also Harrogate who misdiagnosed my boy, he was seen by 2 SHO's and neither of them knew much about KD other than the "text book presentation" where all the symptoms happen at once, so an a typical presentation really threw them. I understand that it's rare but the doctors should have sought supervision from someone knowledgeable, rather than fobbing is off. I'm still waiting for a call back from a partner in the practice having called this morning, so we'll see what they say when they call. Living in Ripon we have the choice of getting our care from Northallerton and that's where we'd choose to go. We've had such negative experiences of paediatric care in Harrogate, this last thing really has been the final straw. Hope your boy is doing okay, he's very cute!

    • I'm sorry you had a similar experience, I shall most definitely be highlighting their need for further training! I like that you printed info for them, I think I'll do that too. Thank you.

    • I'm sorry you've had the same struggle and pleased that you managed to get your son the care he needs and deserves. Well done for sticking to your guns!

    • Hi Netty Jones. I'm really sad to hear Harrogate didn't learn from my son's case. They really should have referred you onto Leeds or Newcastle by now. Please ask for a referral to rheumatology in Leeds as they have KD knowledge and can arrange the other necessary referrals to cardiology. Northallerton and Harrogate only have general paediatrics. KD needs specialists. Your son now needs to have heart scans regularly and also aspirin until after the 8 week scan has been performed if it's too late for IVIG. My son developed a heart murmur in week 3 and Harrogate ignored it suggesting he probably had it from birth which is simply untrue as his previous medical history made clear. KD has changed the course of Tom's life forever. I'm quite happy for you to remind Harrogate about Tom and how they need to make sure they don't make the same mistake twice x

    • Sent you a pm. Good luck!

    • Thank you Gina x

    • UPDATE: so, I finally spoke to a senior partner in the practice and he had knowledge of Kawasaki disease, he questioned me as to why S hasn't been prescribed any aspirin and I didn't have an answer for him. He agreed that S needed to be seen by cardiology sooner rather than later and said he was going to speak to the consultant pead at the hospital to find out how he can make that happen quickly. Fingers crossed we're finally getting somewhere. Hubby and I came up with a contingency plan in case Harrogate don't do what's needed thanks to advice from Gina Sharpe.

      I have to say that the support from here has been so helpful, thank you.

    • Your doctor just needs to write you a note that you present to A&E in Leeds or they can make a referral to LGI consultants direct. There is no reason why he can't ring either Mark Wood or Marek Bohm direct either to ask for an urgent rheumatology clinic appointment. My gp has done it for Tom and we've been seen the same day. I have their phone numbers if you need them. If all else fails, just turn up at A&E in Leeds. It's what we do these days. I won't take Tom to Harrogate anymore. Leeds are fantastic and always take us seriously. Good luck and I hope your lo gets to be seen by the right people ASAP x