How to prevent complications from IVIG

[writergal]

We're currently talking with two different doctors in Michigan about doing IVIG for our son. One does 1.5g/kg over 2 days and the other does 2.0g/kg over one day.

 

Is anyone aware of any other doctors doing IVIG using 2.0 g/kg in just one day? And also does anyone know what steroids, etc. have been ordered to prevent the child developing aseptic meningitis? 2.0 g/kg in one day seems fast and we're concerned. Our doctor has assured us that this hospital does IVIG all the time, etc., but I still have many questions that have not been answered to my satisfaction.

 

Thanks in advance for any insight!

 

Julie

[momaine]

We're currently talking with two different doctors in Michigan about doing IVIG for our son. One does 1.5g/kg over 2 days and the other does 2.0g/kg over one day.

 

Is anyone aware of any other doctors doing IVIG using 2.0 g/kg in just one day? And also does anyone know what steroids, etc. have been ordered to prevent the child developing aseptic meningitis? 2.0 g/kg in one day seems fast and we're concerned. Our doctor has assured us that this hospital does IVIG all the time, etc., but I still have many questions that have not been answered to my satisfaction.

 

Thanks in advance for any insight!

 

Julie

My dd gets 1.7g/kg dripped slowly over 2 days. (like 6 hours first day and 5 second day) They also pretreat with Motrin, Benedryl, and prednisone. (40mg of prednisone and she weighs 115 lbs) I only do the prednisone on the days she gets ivig but he suggests a few days longer. Dd also has lyme so I use as little as possible to prevent the migraines.

 

2 g/kg in one day would very possibly cause serious migraines. I would not recommend it no matter how many times the hospital has done it before.

[writergal]

Thanks for your input. I'm highly irritated at the doctor that wants to do it all in one day. He's taken over a week to get back to me, the nurse couldn't answer any of my questions and he just doesn't seem to get that we are concerned about our son- and the hard part is this hospital will likely have more success with getting the IVIG through our insurance company. Aghhh!

[writergal]

Does anyone know if Dr Bouboulis does 2mgs at a time? Has anyone had experience with his protocol?? How was your child?

[missjo]

My 16 Yo son had 2g/kg over two days. They began infusing at a rate that would take about 4 hours per day, but about an hour and half in he had VERY SUDDEN(one minute fine, started coughing and within one minute struggling for breath) breathing difficulty so they stopped gave him a breathing treatment, more benadryl and waited about 30 minutes. His breathing recovered quickly but they had to decrease infusion rate to about 6 hours. Day two was also done slowly. I dont think he would have done well if they had tried to do it all in one day. He had no history of asthma or other breathing problems.

[kimballot]

I believe 1.5 or 2.0 grams per kilo are generally used for PANDAS, but I think most (if not everyone) infuses over 2 days at this rate. My son gets 1.5 grams per kilo and he is an adult-sized person. It takes about 6 hours per day - any faster and he gets a migraine.

[peglem]

We get 1.5g/kg every 2-3 weeks. About 6 months in we began doing 1 day infusions and my daughter tolerates it very well. The infusion takes about 6 hours. That being said- they do begin the infusion very slowly and do gradual increases- checking continually to make sure she is handling it okay. I think the 1st infusion at least, should be planned for 2 days since you do not know yet how well he will handle it.