This is our journey with Kawasaki disease all the way from South Africa. Its been 6 days Post and Mia has good days but also bad days where she is not playing or walking and extremely tired, she is also not the little girl we know that's always bubbly, happy and willing to go into anyone's arms, she is now scared of everything and everyone, we think it might be the trauma of all the needles ect during our hospital stay. We hope to have the real Mia back soon..
Bernice Czujko shared her album to the group: Kawasaki Disease Support Group.
My daughter was nearly 5 we had two mis diagnosis... she changed a lot in personality very clingy... scared of things... grumpy.... she couldn't walk far at all all of her muscles ached now she does competition dancing and is a very lively 8 year old... she does have ongoing problems but none with her heart thankfully.... it seems like you are in another world sometimes.. and no one seems to have heard of Kawasaki... lots of help and support in these groups.... love and hugs to you..... xx
Thank you Samantha xxx
She is beautiful. Hang in there. It takes time for them to get past the hospital trauma.
My daughter was diagnosed with KD in September 2016... she's making progress when it comes to doctors, hospitals, she used to cry the place down, she makes no fuss now, same as with her aspirin she doesn't mind at all now, she's used to it all. Sleeping isn't quite back to normal, but remember it all takes time. Love to u and ur little girl xx
Such a lot for them to go through. I was 'lucky' that Freya was such a tiny baby as she didn't really know what was going on. Give her time, and a lot of love. Best of luck on your journey with this disease xx
Youll pull through eventually :) were from SA too, 6months post kd
Thank you mommy's for your encouragement we are now 8 days post KD and have our follow up appointment with the Pedeatrition today!
Good luck! When my little one was diagnosed with KD it was the most scary time of my entire life. I suffered with post traumatic stress disorder afterward and it took me many months to recover. But we are now 22 months on and life is as normal as it's ever going to be. Freya's heart suffered, so we will never be able to put it behind is completely, but everything else is just great xxx
Some days i think us as parents suffer more than our kids with this disease. The unknown is what gets to me most. I am thinking of you and your little one xxx
We are 4 yrs post KD with my Grandson. We now feel that we are out the other side of KD, but definitely don't have the same boy. He is very easily annoyed, can only sit for so long then just has to get up and move and jump around and tells us he can't stop himself, his legs have to do it, we've just got used to it now. Used to get tired easily but that seems to have passed. You will get there and we feel lucky that it's just little things that we have been left with compared to some families. Xx