How long will this last for?

Personal stories of individuals and families affected by Kawasaki disease
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MomOf9yroldW/KD
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How long will this last for?

Post by MomOf9yroldW/KD » Thu Jul 22, 2010 5:25 pm

My son is 9 years old and will be 10 in Sept. He was diagnosed with KD on 7/9/10 and has been sick since 7/4/10. He was hospitalized on 7/10/10 and given the IVIG treatment. The first treatment didn't work so they did a second IVIG treatment. He made better progress with the 2nd treatment, so he was discharged after 5 days in the hospital. The same day he was discharged (later in the day) he was back to feeling lots of stomach pain and running a fever of 103.1. On top of that, the poor kid had such a bad head ache he couldn't move or hardly open his eyes (the doctors told us that was from having the IVIG). The doctors put him back on the high dose of aspirin and sent us back home. We have been in and out of the doctors office since. My son is still having high fevers and is feeling ill. The doctors might have him try a steroid treatment depending on how he does over this next couple of days. Good news is that his heart is still holding up (we had a 2nd echo-cardiogram today). This is a CRAZY disease!

abc-mom
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Re: How long will this last for?

Post by abc-mom » Thu Jul 22, 2010 8:26 pm

What a rough ride. I am glad that you got a good report today, but am very surprised that the cardiologist didn't send your son back to the hospital.

I am not a doctor. Speaking as a KD mom, though, I don't like that your son has a fever several days after his 2nd IVIG. Some kids are IVIG-resistant. If the fever persists 24+ hours after IVIG treatment, I would take him right back to a children's hospital and have the doctors determine the next course of treatment. I wouldn't take the wait-and-see approach, as it sounds like he could still be in the acute phase of the illness. Again, this is just my opinion, but I'm pretty passionate about it!

Good luck, and please keep us posted. Many of us have walked in your shoes...

bethroth
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Re: How long will this last for?

Post by bethroth » Fri Jul 23, 2010 9:51 am

Please take your child back to a childrens hospital right away if they are continuing having a temp over 101. KD is not a wait and see disease! I don't mean to scare you but a continued high temp needs to be taken seriously and another form of treatment started. Please keep us posted. Good luck!

Beth

MomOf9yroldW/KD
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Re: How long will this last for?

Post by MomOf9yroldW/KD » Sun Aug 01, 2010 2:00 pm

Thank you all for the advice. My sons name is Schuyler (Skyler), he will be 10 years old in September. He is still having trouble with the KD. The fever has broke finally, after 3 1/2 weeks. His rash came back 2 days after the fever broke... then even more strange, his veins in his bottom came to the surface, kind of like varicose veins and they left scabs. Now he is having all kinds of pains, in his legs, in his arms... just all over. It seems that the pain comes and goes, more so in the night than in the day. The doctors just want to run more blood tests now. I was told by my sons doctor that he spoke with a doctor from the Boston Children's Hospital in regards to his case and that doctor told us to not do anymore treatments. They think that my son is almost over KD, because his platelet level went down a little. They thought this over a week ago... and now we are having more trouble. Schuyler is way better than he was at the beginning of all this, but he's not better yet.

Is KD supposed to last this long? He's been sick for a month now and has had 2 IVIG treatments. Should I look to a different doctor in this case or should I let it go and see if he gets better?

winter
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Re: How long will this last for?

Post by winter » Tue Aug 03, 2010 10:48 am

I know when my daughter was released from the hospital after KD they told us "she can go back to school tomorrow for all we care, she is fine" Looking back I often think 'what in the world was he thinking'. We actually did not ever send her back to school, I did a public school online for her. She did not have cardiac involvement as of yet and that was almost three years ago, but it has been a bumpy road.

My dr's made it seem everything will be fine once KD is done, but that has not been the case for us, she has continued to have immune problems (which no one can find out why), she was diagnosed with chronic sinusitis, and we watch her closely. A common cold can turn into 6 weeks of fighting. We sent her back to school for one year and she missed so much because of illness we took her out again and are doing a public school online again. Which has greatly improved her health, not being around the germs all the time.

So I would expect even after the KD symptoms wear off, your life will not be the same. But it is so nice to have the company of this forum since the Dr's only say "I don't know, we don't know yet" this helps with our sanity for sure.

Hang in there. Your not alone.

MomOf9yroldW/KD
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Re: How long will this last for?

Post by MomOf9yroldW/KD » Tue Aug 03, 2010 5:29 pm

Thank you so much, Winter! I think we are in for a long hull for sure. My son is still very sick and the doctors are all acting like nothing is wrong, just because the last echo and ekg came back okay. This is so frustrating and I am so glad there are others that understand me. I will have to look into online school... I've never heard of that for grade school before. What a great idea! Thank you again for your kind words! I hope your little one continues to do well.
Take care!

kelasmom
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Re: How long will this last for?

Post by kelasmom » Tue Aug 03, 2010 9:39 pm

My daughter is 9 and sounds similar to your son's situation. She also required 2 doses of IVIG. Her fevers were persistent after her second dose so after watching her for 48 hours in the hospital they gave her high dose steroids for 3 days. Her fevers stopped and have not returned since. She is eating well at home, but very tired and has had 3 major headaches since coming home.
All toll she was in the hospital for 14 days.
If your son continues to have the fever I would absolutely ask for Dr. for the next treatment available.

nidal raslan
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Re: How long will this last for?

Post by nidal raslan » Thu Aug 12, 2010 12:15 am

This is so hard i been there and done that, my son had 2 treatment of IVIG and 2 treatmeant of steriod....nothing worked.....exept the medication called inflaximab (which is not a medications for people under 18 years of age) the doctor had to have a lisence from the medical board to be able to give it to my son which was 7 and a half @ the time...my son (Kareem) was in hospital for 6 weeks..hang in there the good news is that the heart is doing fine...keep your chin up....just yesterday I posted my son's story..have a read.....I wish your son a speedy recovery...all the best.....

MomOf9yroldW/KD
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Re: How long will this last for?

Post by MomOf9yroldW/KD » Sun Mar 22, 2015 8:28 am

My son is now 14 years old and was just diagnosed with Stage 3 T Lymphoblastic Lymphoma. Does any one know if there is a connection between the two? It seems that there is from what I'm finding on the internet. Just curious.

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