Does this sound like Kawasaki Disease Drs won’t take me seriously

General discussion regarding Kawasaki disease
Post Reply
Pinkbear154
New Member
Posts: 2
Joined: Mon Mar 05, 2018 6:57 am

Does this sound like Kawasaki Disease Drs won’t take me seriously

Post by Pinkbear154 » Mon Mar 05, 2018 7:29 am

Hi, I’m new to this forum and really hope I can get some advice. Last December my youngest son who was 5 then was very poorly. On 20th December he started to become irritable and came down with a high temperature 39.5. He continued to have a temperature of between 38.5 and 39c.

On the 22nd of December he broke out in a blotchy rash all over his body, arms, legs bottom and gentials. It was a rash I have never seen before, he continued to have a high temperature.

By the 24th December he still had a high temperature and rash had got much worse, his face went puffy and swelled up around his eyes and his hands and feet went red and puffy and swelled up and his lips went red.

I phoned 111 and was told to give him allergy medicine as probably a allergic reaction but this did not help. The on phoning again I was told probably just a virus and not to worry.

I was very worried and was going to take him the hospital but could not find any one to take us on Christmas Eve.

He improved a bit over next few days but continued to have a high temperature. Swelling started going away on 26th December. But his eyes started to go red and watery like a eye infection.

I took him to See Dr on 27th who tried to tell me it was nothing prescribed antibiotics and sent us home.

Over the next few days he Slowly improved, the high temperature lasted until the 31st December. By then he had had a temperature for over 10 days.

Since then he seems to have recovered but seems to cough when wakes up and when ever he gets out of breath. He never did this before.

Some one mentioned Kawasaki disease and I did mention it to Dr when I took him. But Dr would not listen and practically laughed at me.

I have since been in touch with a Dr my son sees at local hospital (a peadiatrician)and she won’t take me seriously either.

Does it sound like Kawasaki Disease to you guys. Do his symptoms fit. Is it to late to try and get a diagnosis now.

Should I be worried if it is and has not been treated. Is it far too late to get treatment now.

Any advice would be much appreciated. I’m sorry this is so long

Thanks in advance

Cici
10+ Posts
Posts: 15
Joined: Fri Jan 12, 2018 2:44 pm

Re: Does this sound like Kawasaki Disease Drs won’t take me seriously

Post by Cici » Tue Mar 06, 2018 6:27 pm

KD is serious and I’m surprised why the two doctors didn’t take it seriously... I recommend that you ask for a blood test plus an Echo. Be strong and protect your kid. Trust your instincts.

Pinkbear154
New Member
Posts: 2
Joined: Mon Mar 05, 2018 6:57 am

Re: Does this sound like Kawasaki Disease Drs won’t take me seriously

Post by Pinkbear154 » Sat Apr 07, 2018 7:28 am

Cici thank you for you reply. I spoken to peadiatrician again that my son sees at local hospital and she still would not listen or take me seriously. He also sees Drs At Alder Hey Children’s Hospital so spoke to them explained every thing and emailed them pictures of rash he had .

They saw him 3 weeks ago and examined him. I explained that I was worried he might have had Kawasaki Disease back last December but they did not seem concerned.

I asked if they could do blood test and they refused. When the Dr examined him though he was listening to his heart and detected a soft systolic Murmur.

He has now been diagnosed with a heart murmur. Again dr was not concerned.

My son has had his heart listened to so many times since being born and a heart murmur has never been detected before. He had a heat scan and I think a ecg ( where they stuck these things on him and connected cables)nearly 2 years ago as matter of routine when trying to find out why he was poorly with some thing else that showed nothing. So they won’t do it again.

Should I be worried could this Heart murmur be related to kawasaki disease.

Any advice much appreciated

Thanks in advance

empoweredparent
10+ Posts
Posts: 15
Joined: Sun Oct 31, 2010 12:13 pm

Re: Does this sound like Kawasaki Disease Drs won’t take me seriously

Post by empoweredparent » Sat Apr 07, 2018 8:05 pm

Has he had an echocardiogram?? Listening to the heart is not enough. The new standard is any murmur in a child is investigated with echo.

Cici
10+ Posts
Posts: 15
Joined: Fri Jan 12, 2018 2:44 pm

Re: Does this sound like Kawasaki Disease Drs won’t take me seriously

Post by Cici » Sat Apr 07, 2018 10:16 pm

Hi
I’m sorry to hear your experiences with those doctors and I completely feel your frustration. I urge you go to a Children’s Heart Clinic or find a pediatric cardiologist for your son and request an Echo. In the meantime, request your son’s pediatrician to order a blood test to check for white-cells, red cells and platelets counts. If your pediatrician refuses a blood test, you can always go to an ER asking for a blood test. KD symptoms can go away without IVIG treatment, but you can’t see how the heart is doing without an Echo, the most important thing post KD is any heart related issues should not be neglected. Be strong for your son and find the right doctor who knows KD and also takes you seriously.

All the best!!!
Cici

Post Reply