What to expect in next weeks and months - need advice

General discussion regarding Kawasaki disease
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What to expect in next weeks and months - need advice

Post by Pstirlingfox » Tue Apr 02, 2013 9:48 pm

My 6 year old son is still in hospital following surgery to remove his inflamed appendix a week ago, and the subsequent diagnosis and treatment two days ago of KD.

He is doing so much better since IGIV/high dose ASA, but still having a lot of pain from surgery, in joints, sore lips and tongue and now headaches. They think they will send him home tomorrow or next day and I need to know what to expect.

What symptoms continued past hospitalization?
For how long are activities restricted?
How long do I keep him home from school? Is exposure to flus or other illnesses dangerous?

I know we will have follow up appts with paediatrition and cardiologist, as well as surgeon - but I don't yet have the info I need to feel comfortable bringing him home.

Thanks for your help!

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Re: What to expect in next weeks and months - need advice

Post by monroeek » Sun Apr 07, 2013 11:03 pm

From what I've read from everything I've read everybody is a little bit different. I have three children two of which have had KD two years apart. When my son(now 10 yrs old) had it two years ago the change in temperament lasted the longest. He would have these angry outburst followed by weeping, it was nothing that he could control. Back then when I called to ask the docs about it I was told it had nothing to do with KD, nowadays it is listed in the list of symptoms. He also had a hard time bouncing back and seemed to catch everything under the sun for the following few months. Once summer started and he was out of school he seemed to do much better. My daughter, 4 1/2, was diagnosed with KD on the 20th of March. She is suffering from changes in temperament as well but they are mostly focused at medical personal which makes even the quickest, simplest checkup a heartbreaking situation. Her eczema was a problem for a week after her release from the hospital but I was able to sneak her cream and ointments on her while she slept, she did not like being touched. The other things that seem to linger are sensitivity to light (seems to get better each day) and some random stomach pains. Wishing you and your son some relief. Hope this helps.

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Re: What to expect in next weeks and months - need advice

Post by practicing patience » Mon Apr 08, 2013 11:29 pm

Let your child be your guide. There are so many stories here and the only common thread I noticed was how different everyone's child was once home again. Best wishes to you and yours.

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Re: What to expect in next weeks and months - need advice

Post by CypriotHelen » Sun May 12, 2013 5:12 am

I sometimes wonder if normal 'children growing up' symptoms may be labelled as KD after effects.......what I can confirm is that the immune system does appear to at a lower level after KD for approx 24 months......but kids are kids and they will catch things, just be on the look out and treat as soon as you can. I believe that the Asthma my son has came on after KD....but it may have nothing to do with it. I am ever vigilant with regards to fever now, and won't let my son go for more than 24 hours without seeing a doctor.
One thing that you can be assured of is that you are not alone.....and as scary as KD is.....when your child is taken for test after test and no diagnosis found and then on the 12th day (the 11th hour) you are told he/she has to have IVH NOW.........they get better and bounce back.
My only longterm side effect appears to be......doesn't like milk! Hasn't touched it since the day he started his fever!

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Re: What to expect in next weeks and months - need advice

Post by Brittni » Wed May 15, 2013 5:58 am

We are still in the beginning of this journey. My four year old was diagnosed 14 days ago and had the IVIG treatment 13 days ago. Seems like it's been forever. :)
The only behavioral issue we noticed was how he acted when on the IV treatment of steroids that they have him. It was three days and it was a nightmare. They sent him home on a liquid oral steroid and low dose aspirin because he had an anyerism in one artery and dilation in two arteries. We are just starting to wean from the oral steroid because his echo looked good yesterday! Yay!
The rheumatologist that specializes in KD at Texas Children's Hospital told us that because of the IVIG treatment, Julian has the immunities of 2000 people, since it takes that many people's blood to create one dose of IVIG. We are still early into this, but Julian seems to be back to his normal self. I just hope I'm not jinxing myself. :)

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Re: What to expect in next weeks and months - need advice

Post by Angie » Thu May 23, 2013 7:23 pm

My daughter had the IVIG two times when she had KD almost 8 years ago. She bounced back pretty quickly, but she was 3 and it's hard to keep a 3 yr old down once they wake up. :) She had been given benadryl to help her sleep during the treatments of IVIG too so that kept her woozy and tired. She went home and had the aspirin therapy and if she took anything else I can't remember right off, it's been so many years! But she did great. And the only side effect at first, maybe for the first year or so was she was more weak when she came down with a common cold than most children are AND her colds and flus and other little things she picks up seem to last a little longer than other children have it. Kids are generally tired very easily for the first six months or so after having the disease too but they get past that. Other that that, she is fine and perfectly normal child. Usually unless a child has been diagnosed with a heart problem after IVIG they go away healthy like they were before and get back to their normal self over time.
~*~Mommy to 3 wonderful children~*~ Member here since 2005
Daughter successfully treated for KD in December of 2005 at the age of 3.
Now a happy, vibrant, active 12 year old~*~

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Re: What to expect in next weeks and months - need advice

Post by asandi » Sun May 26, 2013 12:18 am

Thanks for sharing. My daughter was diagnosed with KD on May 13th, she received IVIG and is kind of going back to normal. She is getting aspirins every 6 hrs and we are praying for her temperature to remain back to normal as it is now after the treatment. She is a bit grumpy and is hard to have her eating easily as she likes to go back to paint and play! but is kind of normal for her. The day of her birthday she got fever and she was diagnosed before the first 10 days. The cardiologist did the ecocardiogram during hospitalization and apparently no heart vascular damages have happened. In 1 week she is getting another ecocardiogram and the Dr says that another ecocardiogram in 6 weeks. I hope my girl recovers and go back to normal. Our prayers to all families and children diagnosed with KD.

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Re: What to expect in next weeks and months - need advice

Post by Heidiandpat » Wed Apr 23, 2014 11:17 pm

I am trying to get any information on typical recovery. My son (10 years old)was diagnosed with KD on 4-6 (after 6 days of fever). He received IVIG and asprin. Echo was good in hospital. He seemed to do pretty well his 1st week home, but it was spring break. I have tried sending him to school this week for a couple hours a day and he seems to be declining. No fever, but stomach aches. They are the same as the pains he had in the beginning. He still has a good appetite though. Any insight would be great. Please email me if you can offer any information. Such a crazy time for our family. Heidiandpat@msn.com

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