How many days should I insist to spread out IVIG?

[parents4eyes]

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Edited September 9, 2010 by parents4eyes

[Worried_Dad]

Hi, May:

 

I'd try to make sure they do this over at least 2 days, and with a sufficiently slow infusion rate (6+ hours each day vs. the standard 4 hours). We tried to have a 2nd round of IVIG done locally for our son - it was disastrous. Only got through half of day 1 of 2: they were supposed to be using Dr. K's protocol, but they didn't and infused 50% faster, even though I repeatedly mentioned that Dr. K did this much slower at OBSC in Chicago during our 1st round. In the end, they cancelled the procedure and refused to reschedule because they said our son had an "adverse reaction" to the Ig.

 

We later discovered from multiple sources (Dr. K, web resources) that our son's issues - dizziness, shortness of breath, headache - are a very common side effect of a too-rapid infusion rate. Dr. K starts with a very slow rate and gradually increases it over the 6 hours of infusion each day; our local clinic insisted on doing a steady rate (no "ramp-up") over 4 hours maximum, just saying "that's how we always do it." Most documented adverse reactions to IVIG, especially in children, are directly related to the infusion rate!

 

Here's an article from Pediatric Nursing that discusses recommended infusion rates for children, based on the dose of Ig they are receiving:

 

http://findarticles.com/p/articles/mi_m0FSZ/is_n4_v22/ai_n18607140/

 

Hope that helps, and best of luck!

 

(P.S.: Our son ended up having 2 more IVIG's with Dr. K in Chicago after this aborted local IVIG and he had no adverse reaction whatsoever. The right infusion rate makes all the difference!)

Edited August 21, 2010 by Worried Dad

[momaine]

  On 8/21/2010 at 5:02 PM, Worried Dad said:

Hi, May:

 

I'd try to make sure they do this over at least 2 days, and with a sufficiently slow infusion rate (6+ hours each day vs. the standard 4 hours). We tried to have a 2nd round of IVIG done locally for our son - it was disastrous. Only got through half of day 1 of 2: they were supposed to be using Dr. K's protocol, but they didn't and infused 50% faster, even though I repeatedly mentioned that Dr. K did this much slower at OBSC in Chicago during our 1st round. In the end, they cancelled the procedure and refused to reschedule because they said our son had an "adverse reaction" to the Ig.

 

We later discovered from multiple sources (Dr. K, web resources) that our son's issues - dizziness, shortness of breath, headache - are a very common side effect of a too-rapid infusion rate. Dr. K starts with a very slow rate and gradually increases it over the 6 hours of infusion each day; our local clinic insisted on doing a steady rate (no "ramp-up") over 4 hours maximum, just saying "that's how we always do it." Most documented adverse reactions to IVIG, especially in children, are directly related to the infusion rate!

 

Here's an article from Pediatric Nursing that discusses recommended infusion rates for children, based on the dose if Ig they are receiving:

 

http://findarticles.com/p/articles/mi_m0FSZ/is_n4_v22/ai_n18607140/

 

Hope that helps, and best of luck!

 

(P.S.: Our son ended up having 2 more IVIG's with Dr. K in Chicago after this aborted local IVIG and he had no adverse reaction whatsoever. The right infusion rate makes all the difference!)

 

I know someone whose children had it with a 4 hour drip and they felt quite miserable afterwards for days. My dd had it done with Dr. B at the slower rate and did just fine with some prophylactic drugs. (prednisone, motrin, benedryl, and a bad of iv fluids)

[philamom]

Worried Dad-

Good article. Thanks for posting it.

[parents4eyes]

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Edited September 9, 2010 by parents4eyes