My poor baby was diagnosed with Kawasaki Disease :(

Jaime - posted on 10/30/2010 ( 38 moms have responded )

67

25

9

Hi everyone,

I just thought I would post this here as it's very uncommon. The story is too long, but in a nutshell, my 10.5 month old beautiful baby boy had a high temperature for 5 - 6 days, then other symptoms came out like cracked bleeding ulcerated purple lips, rash, swollen hands and feet and his feet went very very pink and red conjunctivitis eyes without any discharge.

He was diagnosed last Wednesday night, October 27th. He was given a gammaglobulin blood treatment through IV for about 12 hours ... costing around $10 000 just for the blood treatment. Luckily I live in lucky Australia, where we have a free public health system ... I thank God that I live in such a wonderful country.

He is doing ok, the treatment brought the fever right down to normal. We are home now and he is happy most of the time. He has times where he is getting aches and pains in his joints, but he is on Aspirin for 3 months now, so hopefully that is helping with his pain.

He has to have an Echocardiogram next Friday and another 6 weeks after, to see if there is any damage to his heart and arteries.

It's has been a really tough time and this is a disease that I'd never even heard of before, probably because it's so uncommon. You always think that things like this would never happen to you, but it can.

I have written a lengthy note about the whole thing, from start to finish, so if anyone would like to read Tyrese's story, email me and I will email it to you.

If your baby has a fever that wont go away for 5 days and blood tests are showing that there is nothing wrong, only maybe an infection, please get your doctor to look into Kawasaki Disease :(

Thanks for reading ... Jaime

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

38 Comments

View replies by

Ashley - posted on 03/06/2013

3

0

2

So I am a little worried, my oldest son was just diagnosed with this disease a month ago and now my youngest (who is 20 months old) is having the same symptoms. I was told that it wasn't contagious but could be possible, which didn't make sense to me. Does anyone else know more information??? Please let me know your input.

Kristina - posted on 10/17/2012

1

0

0

Hi! My 4 years old son was diagnosed with this just 2 weeks ago. He's home and doing better but I've noticed his eyes still turns red some days. He's also very irritable throughout the day. This disease is so scary because its not common & doctors don't know a whole lot about it. What long term effects did your son experience?

Claire - posted on 10/04/2011

1

0

0

Hi, My 4 months old baby has kawasaki amd we are living a nightmare. Can you please send me this story.
Thanks

Angela - posted on 12/21/2010

135

15

21

Hi Jaime :)

I have been away for a while but I am so glad to hear that the second echo went well.

Take it to heart - if she's not worried then really try not to. I'm sure they would tell you straight away if there was something to be concerned with.

Try your best to focus on all the wonderful things your little man is learning to do and try to put the KD out of your mind for a while. (I know this is probably easier said than done) - but you might find the time will just fly by and you will be seeing his Pead in no time :)

I hope you have a happy and safe holiday season.
Merry Christmas and God Bless
xx

Jaime - posted on 12/18/2010

67

25

9

Update on the second Echo, he had it last Friday the 17th. She couldn't tell me anything but said that she isn't worried. I can't get into see his Paediatrician until March 10 :( Oh well, she said she isn't worried so I will try not to worry :)

Jaime - posted on 12/02/2010

67

25

9

Karen I am so glad your son is ok and didn't end up with KD!! It's so hard when the fever wont go down and you don't get any answers :(

Karen - posted on 12/01/2010

17

18

0

I'm praying for you and your son. This post meant a lot to me because I was worried I would be in your place right now. A couple weeks ago my son was in the hospital for a high fever, I was told it was a viral infection but to look out for the symptoms of this disease. He had a high fever for 4 days and a rash but he never showed any other signs of it. I'm glad that he was fine though. I hope your son keeps getting better! God bless!

Jo - posted on 11/13/2010

39

42

1

yay! good to hear!!
thanks for that, i've been waiting to hear an update :)
keep us posted! and all the best!!

Jaime - posted on 11/12/2010

67

25

9

Thanks girls xx

Well he had the Echo yesterday and the woman said it looked good and she wasn't worried.

RELIEF!!!!

She said that sometimes damage can come out 4 - 6 weeks after getting KD, but she seemed pretty confident that he's going to be ok.

He has his next Echo on his birthday, on December 17 and if that is all clear, he wont have to have anymore!! :)

Jillian - posted on 11/10/2010

3

26

0

Praying for you and your little boy. Looking forward to reading your updates from this Friday. You are very strong to put your story out there for all of us to read. Thanks for thinking of other moms :-)

Deirdre - posted on 11/09/2010

38

21

3

My son was diagnosed with cystic fibrosis at 2 weeks of age so I can sympathize with your child being diagnosed with a serious disease. I will pray for your little guy and hope he continues to get healthy and strong again!

Meagan - posted on 11/09/2010

8

6

0

Jamie, I'm sorry to hear this however keep you head up. My bestest cousin had that as well and he is now 21 years old and doing great! Lots of well wishes and prayers headed your way!

Jaime - posted on 11/09/2010

67

25

9

Thank you everyone for your lovely comments :).

He is doing really well, it's been 13 days since his treatment and it feels like he's even stronger than he was before he got sick. We have 3 more days to go, until the Echocardiogram, but time seems to be going fast which is good.

I will update after Friday. Thanks again for your beautiful replies xx

Rola - posted on 11/08/2010

2

126

1

Thank you jaime for educating us, you are a very brave mom god bless you hope your son will be better soon

Kellie - posted on 11/05/2010

54

32

1

I used to babysit a boy that had kawasakis disease. Luckily nothing ever happened while I watched him but it was kind of scary. I was in junior high at the time. Many years ago.

Tina - posted on 11/04/2010

28

19

1

What a scary thing for you to deal with. Thank you for being so brave and thoughtful to share your story. I thank God every day for that day that I have with my baby because you never know how long you will have them.
I am so happy that he is doing better and that they were able to figure out what is wrong with him.
God Bless xxxx

Lindsey - posted on 11/04/2010

4

5

0

Thanks for sharing your story Jamie and hopefully his Echocardiogram comes back with good results!!

Alexandra - posted on 11/04/2010

12

20

0

God bless you and your child. Will be praying that everything turns out well. My son was born premature and spent 2 months in the hospital connected to machines and monitors so I can sympathize with you in some ways. We also went through a time when we were in and out of the Cardiologist and Nephrologist and our son had surgery for bilateral hernias about 2-3 weeks after he came home. It is a hard/emotional road but God never gives you anything that he doesnt think you can handle. I know what you mean about you never think it will happen to you but once it does you realize what a blessing and a miracle these little ones. My prayers are with you and your family!

Jaime - posted on 11/03/2010

67

25

9

Thanks Kimberley and Niki :) Niki I'm glad your little one is ok and didn't have Kawasaki's, even if you didn't end up with a proper diagnosis.

Niki - posted on 11/03/2010

16

17

1

wow, Jaime, that is tough. I remember when my oldest son now 3 and 1/2 yrs old had a bought of something. They initially thought it was scarlett fever( as a child in the dayhome he was at had strep throat), then they thought it was kawasaki disease, then measles. They never did find out what it was but found out thankfully that it was not kawasaki's. He had a rash from head to toe and a temperature.

Kimberley - posted on 11/03/2010

4

4

0

i hope your baby gets better too so you won't have to worry anymore. i'd die if my baby was sick with a disease like this. thumbs up for being so brave to go through something like this...

Christy - posted on 11/02/2010

7

15

0

I hope that your sweet baby gets better soon, and you can finally get some rest. Thank you for the post!

Jaime - posted on 11/01/2010

67

25

9

Thank you Kristy, what a beautiful post xx. I know I took for granted that I had healthy children but I never will again. I will also never take Australia's free public health system for granted either!

Kristy - posted on 11/01/2010

71

7

4

Thank you so much for educating us about this very serious and rare disease. Too many parents out there do not realize what a blessing it is to have a healthy child. My niece suffers from a mitochondrial disease ( I call it a metabolic disorder). I see all that my sister and her family have endured. The stress, the worry the poking and prodding and surgeries my niece has suffered through. It hurts me to see such little child go through so much. It takes a lot of grace and patience and love to parent a child with a disorder or disease or some abnormality. I am convinced that God gives children to each parent intentionally. He understands the worry, sleepless nights, pain, fear, the anger and frustration that each of these parents must go through. It is a difficult road to walk and yet one you must. I pray that God will guide you and give you strength. I thank God for mothers like you!!

Jaime - posted on 11/01/2010

67

25

9

Thank you Jo xx

I found out earlier that his Echocardiogram has been pushed back another week :( so now I have 11 days of worry, instead of only 4 :(

Jo - posted on 11/01/2010

39

42

1

My heart broke when i read this :( its really relateable when you have a son the same age. Thanks for sharing your story.
strength to you, and lets hope your son will continue to get better.
God bless you and your fam.

Jaime - posted on 10/31/2010

67

25

9

You are most welcome Angela :) and thank you. I will update on here after he has his Echocardiogram on Friday. xx

Angela - posted on 10/31/2010

135

15

21

Hi Jaime,
What a scary thing for you to deal with. Thank you for being so brave and thoughtful to share your story. I hope the worst is over for him now.
God Bless xxxx

Heidi - posted on 10/31/2010

103

29

26

God Bless you and your son. I am so glad he's doing better and that they were able to diagnose him so soon! Take care

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms