My three year old nearly died from Kd

Personal stories of individuals and families affected by Kawasaki disease
Post Reply
Jojo
New Member
Posts: 2
Joined: Mon Sep 28, 2015 10:06 am

My three year old nearly died from Kd

Post by Jojo » Mon Sep 28, 2015 12:08 pm

My son Kya was a normal three year old until sept 6 2015 , this is the date the nightmare started , Kya woke up and was very lethargic a little warm ,but no fever he just laid in his bed refused drinks etc , as the day wore on his gland on his left side of neck started swelling his temp went up to 101 , we gave him paracetamol but his temp kept rising , we took him to the GP who refered us to our general hospital , we was told he probably had tonsillitis so he could have antibiotics and go home , I was not happy for him to go home as by now he was vomiting and not keeping anything down , the doctor agreed to keep Kya overnight on IV antibiotics then send him home in the morning, Kya then developed a rash in his groin , we were told this was thrush as his mouth looked a little sore at this time his eyes were red an a little sticky , The rash started to spread his temp now 103 , his routine bloods came back and his liver function was off , also his blood gases were abnormal he was serverly dehydrated and IV fluids were not helping he was swelling up like a balloon he put on 3kg in one and a half days we was told his kidneys were not working properly and liver function was worse he was now taco cardic and his sats an blood pressure were low , Kya was not awake or responsive by day three he had not responded to any antibiotic treatment and all bloods etc was getting worse his heart was going crazy his temp was up to 105 (40.5) the doctors told me they didn't know what was wrong with him , we asked for a transfer , we was refused , we was then told he would be transferred to icu as they ( the doctors ) were very very worried , at this point I felt that my little one was not going to make it his inflammatory markers went up to 380 his blood pressure was very low the doctors could not find a vein to get an IV into him , his eyes were swollen shut he had put on 10 kg in fluid his face and body was just getting bigger and bigger but he was still dehydrated ?........ at this point one doctor suggested Kawasaki disease he was put on to the imaglobin blood product , a course of three treatments , with no response his markers liver etc was still getting worse this was day seven , We got our transfer to an infectious disease unit in London , They had some experience with Kawasaki so we were more confident in the doctors , Kya did not have red feet or hands and did not fit all Kawasaki symptoms .Kya was put on to immuno suppressant drugs and steroids but by day three he was still not responding to the treatment his temp had come down to 101-102 but his markers were still climbing and now he was not able to urinate a cat scan of his head was clear of brain fluid , he was sent to theatre to have a main line to his arterie to give him fluid and drugs a lumber puncture was also performed at this time to rule out menegit etc no bugs or infection was found , we was so worried now his was on various machines including oxygen as his sats were 84-87 his blood pressure was 30 , All treatment had stopped and we was starting to panic again the doctors were at a loss he had developed a heart murmur and we was told they were now looking at other inflmotory diseases Day 11 was the day of miraculous recovery he was given drugs to get rid of fluids he started to look better his liver function was better he opened his eyes he spoke a word , he was still very sick but this was the first day we had of improvement, I won't bore you with his daily recovery ,we are now home he has just started to walk as he was too weak to stand , Then today his rash has come back his gland is up and his eyes are a little red , I have been in contact with the hospital am awaiting a call back wish us luck , will keep you posted 28/09/2015

Post Reply