browneyesmom Posted January 13, 2011 Report Posted January 13, 2011 Ok, so my DD11 had her first IVIG infusions 3 weeks ago while inpatient. The pediatric neurologist ordered 1g Thursday & 1g Friday, for a total of 2 grams over the two days. Today, we are back for her second set and she is getting 0.5g Gamunex (same med as before, but half the dose) today and again tomorrow - ordered by our Immunologist who found her IgA & IgG deficiencies. My question is.... do they usually cut the dose in half like this? What have other's experienced?
peglem Posted January 13, 2011 Report Posted January 13, 2011 Seems like there are a variety of protocols for IVIG, but I have not heard of starting high and going low. We started low and switched it up to higher dose. Let us know how that works for you!
Phasmid Posted January 13, 2011 Report Posted January 13, 2011 I'm no expert on this but I think what they are doing is first, "turn off" the autoimmune process by the high dose infusion. Then, "replace" the missing antibodies, thus making her body more capable of halting pathogenic bacteria, with the frequent, low dose. My son is only getting the low dose (.5/kg). I don't know yet if this will be the "fix" he needs, but so far we do see improvement in some things.
browneyesmom Posted January 13, 2011 Author Report Posted January 13, 2011 Thanks for responding, Peggy. Our Immunologist only first heard of PANDAS when I mentioned it to him myself at one of my own appts with him a couple years ago. He initially thought it was a psych issue, but no longer thinks that. Issue is that he has limited knowledge/experience in the area of PANDAS kids, so I'm concerned that he may be shooting low on her dosage and she may be in for a rough few more weeks before we see Dr. B. :/
norcalmom Posted January 13, 2011 Report Posted January 13, 2011 I thought ivig problematic for kids with Low IgA (unless you use a special kind?)
peglem Posted January 13, 2011 Report Posted January 13, 2011 I thought ivig problematic for kids with Low IgA (unless you use a special kind?) My daughter has very low IgA. Her immunologist uses gammugard with her because it has low IgA. She just had her 12th infusion w/o problems. I know this is an issue for some, though. I think they can check to see if the patient has antibodies to IgA.
Fixit Posted January 13, 2011 Report Posted January 13, 2011 but so far we do see improvement in some things. Cool!!!
browneyesmom Posted January 13, 2011 Author Report Posted January 13, 2011 My understanding is that it depends on what they use. They have her on Gamunex and she is tolerating it fine so far, but every child is different. Thanks for all the responses. I guess as with a lot of this, we'll have to wait and see how she does, hoping for the best while keeping our eyes open.
browneyesmom Posted January 14, 2011 Author Report Posted January 14, 2011 My daughter just told me that she is dizzy, but her head & throat (from strep throat) feel a little better!!! She noticed she felt a little better right after today's IVIG infusion. Yay!!! :'~)))))) Wow... last few days, she was getting so much sicker before this round of infusions. I know we have a long way to go with this still, but it is so good to see glimmers of her returning here and there, every few weeks!! ♥♥♥
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