IVIG for young kids?

[AmberM]

I was wondering if anyone could give a link to any info specifying why IVIG would be dangerous or not recommended for children under the age of 4? We are getting ready to do our second IVIG with my 3 1/2 yr old dd and I've had a couple of friends voicing their concerns but I can't find anything to back up their concerns. We were only able to get half of the treatment done last month due to my dd's horribly tiny veins but we have only seen positives so far and absolutely nothing that seemed to be reason for concern. Any help or advice would be appreciated.

 

thanks,

Amber

[dcmom]

Amber-

 

Unless your friends are MD's or have children with pandas, I can't imagine how their thoughts could be relevant. Certainly, no one who has not been on the front lines of the fight against pandas, can have ANY idea how torturous this is to a child. I am sure you and your husband, along with your doc, have tried all other options, have agonized, and have come to a decision. I think I would have to distance yourself from these friends for a while, unfortunately.

 

Of course, there is risk to everything antibiotics, steroids, IVIG, PEX, vaccines, and even advil for goodness sakes... the key is to balance the risk of treatment vs no treatment. Personally, I think the risk of not treating pandas is super high- but I have seen pandas take SO much away from my kids....

[peglem]

Amber-

 

Unless your friends are MD's or have children with pandas, I can't imagine how their thoughts could be relevant. Certainly, no one who has not been on the front lines of the fight against pandas, can have ANY idea how torturous this is to a child. I am sure you and your husband, along with your doc, have tried all other options, have agonized, and have come to a decision. I think I would have to distance yourself from these friends for a while, unfortunately.

 

Of course, there is risk to everything antibiotics, steroids, IVIG, PEX, vaccines, and even advil for goodness sakes... the key is to balance the risk of treatment vs no treatment. Personally, I think the risk of not treating pandas is super high- but I have seen pandas take SO much away from my kids....

I started to reply earlier, but had trouble expressing it right- but dcmom said it just about right. If your friends can come up with scientific evidence of the danger to your child that you find compelling enough to influence your decision, then that's something. But if they are the ones who think its too dangerous, then I think the burden is on them to provide the evidence. I think what they're perhaps really expressing is that you are putting your child through an unnecessary procedure- not their call. I think many of us have had to deal with this attitude from those outside of the PANDAS realm (including from doctors). Just stick to what you think is best for your child and try to avoid the situation where you are put on the defensive- its unproductive and you already have your plate full dealing with the medical issues.

[LNN]

IVIG is used as a matter of course for Kawasaki's Disease - and KD typically appears in kids younger than 5. So not sure why it would be considered risky simply due to the age of the child.

[AmberM]

I appreciate all the responses. It's weird because both people expressing their concerns are parents of PANDAS kids and they've both done IVIG. But you guys are right, they should be able to show me some studies to back up their opinions. I talked to the nurse at the clinic as well yesterday and she said she has personally done IVIG on at least 6 kids with PANDAS under the age of 4 and only saw positives. I feel confident. And it's true, leaving my dd untreated would only lead us down the road of destruction and despair. Thanks for backing me up, I needed that.