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Hi,

 

I am looking for feedback from those familes who have children that have received long term IVIG treatments and then made deicsion to stop or take a break.

 

How/Why did you make the decision to stop? Did you start increasing space in between infusions or cut it cold turkey?

 

If things went well, what do you think contributed to the continued upward trajectory even though you stoppped IVIG? Or vice versa....if symptoms flared again, what do you think contributed to that?

 

Thanks for any input.

 

Kim

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my daughter has been receiving monthly infusions since August 2013. 2 or 3 times we have tried to space infusions to every 6 weeks, and each time she started to decline at about the four to five week mark.

she received her second course of rituximab in December, and we are hoping, by this summer that she will be able to stop her IViG. She also gets one gram solumedrol with her IVIG. We have also tried at different times to lower that dosage and there was also a decline. She's doing fairly well now, and her next infusion in March will only be with 500 milligrams of solumedrol.

Also, she gets 1g/kg ivig once a month

Edited by powpow
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