question about IVIG treatment

General discussion regarding Kawasaki disease
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joshysmom
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question about IVIG treatment

Post by joshysmom » Sat Jul 18, 2009 4:59 pm

I have been reading some info about typical ivig treatments and most have seen IVIG given over a 12 hour or greater period.
I am sure of my sons dosage, it was about a bag and 3/4 of another - but it was given over 4 1/2 hours..
He had shaking, rapid heart rate, chills and vomitted coffee ground substance ..they then slowed down the administration so it lasted about an extra 45 minutes..
Is that normal?

bethroth
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Re: question about IVIG treatment

Post by bethroth » Sat Jul 18, 2009 5:22 pm

Wow! I don't think I have ever heard of a infusion that fast. My sons lasted about 14-16 hrs. They had to stop it at one point because his BP dropped very low and his hands started to swell horribly. They actualy drew circles on his hands and measured them every 1/2 hr to see how much more swollen he became. I don't remember the infusion being turned off for long then they started with a very slow drip. This was 7 years ago but I don't think that the protical has changed since then. I would ask your dr. why the IVIG was given so rapidly!
Beth

Momcat
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Re: question about IVIG treatment

Post by Momcat » Sun Jul 19, 2009 1:37 am

That's unreal. I think someone made a mistake. Our daughter's second IVIG was given at a rate in 6 hours instead of 12 and the doctor was NOT happy with the nurses. Then they tried to discharge our daughter WITH a fever.......crazy. But 4 and 1/2 hours is even shorter...it is supposed to be 12 hours. I'd say definitely NOT NORMAL.

Dior'smom
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Re: question about IVIG treatment

Post by Dior'smom » Sun Jul 19, 2009 2:26 pm

Hello. My son's second IVIG infusion came with the same problems & the duration was about the same. About 30mins into the infusion he began vomiting, fever spiked to 105, shaking violently, extreme headache & something drastic happend w/his bp but can't remember if it shot up or dropped. The infusion was stopped immediately for about 5 hours & when it resumed it only lasted for 4hours. He had to have this second treatment 28days after his initial diagnosis of KD & first dose of IVIG. In my son's case the nurses looked as scared & unprepared as I looked & felt when this happened to him. We were told that he had an allergic reaction to this particular batch. I have my own opinion. Where KD is concerned my feeling is that a lot of the ID docs are playing the guessing game when it comes to KD & all of its complications & long-term effects & damage.

Lisar
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Re: question about IVIG treatment

Post by Lisar » Sun Jul 19, 2009 5:02 pm

Both of my daughters IVIG treatments were 9 hours long each. Thats seems real fast to me.

beausmom
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Re: question about IVIG treatment

Post by beausmom » Wed Aug 05, 2009 2:34 pm

My son's IVIG treatments lasted 15 hours each. I am a nurse, and I am shocked that that treatment was run in so fast! I hope he's okay now!

Mylies mom
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Re: question about IVIG treatment

Post by Mylies mom » Thu Aug 06, 2009 5:26 pm

My daughters IVIG treatment went like this- First treatment was horrible had to be stopped after 2 hours. Her blood pressure dropped to 50/30, her resp dropped and o2 dropped into the 80's and her temp spiked. Don't even remember what it was. Dr. then decided to try again the next night. They gave her more steroids, more benadryl, and tried a different batch number . Infused it at a slowere rate and gradually increased it. Took it like a champ that night and they then continued it for three more doses the next 3 nights. Hope they know what they are doing here in SD. Treatments took about 8-10 hours each. Cathy

maxlipman
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Re: question about IVIG treatment

Post by maxlipman » Sat Nov 05, 2011 2:05 pm

My name is Max and I am 14. This week I had 3 steroid infusions that lasted 2 hours each, on Wednessday, Thursday, Friday. On monday, I will have my first IVIG infusion that will last 9 to 16 hours. Can someone please give me advise? I am nurvous with all the side effects and how that it will take so long. Thanks

P.S. They are treating me for an auto-immune disease.

liquidambar
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Re: question about IVIG treatment

Post by liquidambar » Sat Nov 05, 2011 6:21 pm

Maxlipman;
My sister in law had steroids and the long drawn out IVIGs.
She said she got cold during them, so maybe you could bring your own blanket and if you have a favorite pilow?
Also audio CDs with earphones would be helpful to take your mind off of things and help you relax. Pick an audio book that you like - I suggess any of the Harry Potter books.

It helped my sister-in-law a great deal, she felt, and did better after she had them by far --- than before.

Good luck with it. I am truly sorry you are having all this at such a very young age, but try not to worry, when so little is really in your control.

Do you know what auto immune disease that you have?

Momcat
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Re: question about IVIG treatment

Post by Momcat » Mon Nov 07, 2011 1:31 am

My daughter had 3 IVIGs and they last a while, but no real side effects, she also had pulsed steroids and the worst part seemed to be that it leaves a nasty taste in your mouth. You'll probably have a TV in your room, so grab on DVDs and a good channel!

toffeegirl
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Re: question about IVIG treatment

Post by toffeegirl » Tue Dec 13, 2011 7:31 am

My daughter had 2 rounds of IVIG and both were given over a period of around 4 hours. I read the side of the bottle on the drip (not that I don't trust anyone :) ) and the dosage and rate she was getting it was right according to that.

beth27
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Re: question about IVIG treatment

Post by beth27 » Tue Dec 13, 2011 11:43 am

My daughter had two rounds of IVIG. We were told it would infuse for about 8 hours. She had a horrible reaction to it as well, tremors, temperature spiked, uncontrollable vomiting, it was so scary!!! They started it again later that night, but predmedicated her and ran it for a longer period of time, I think around 10 hours or 12 maybe, and she did fine. The second treatment they knew to premedicate her and run it at a slower rate, and thankfully she did fine then as well.

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