IVIG reaction in Neurotypical child?

[Sinberg]

Hi! I'm new and I've been lurking for about 6 months now. Dd7 is a lyme/PANDAS patient with Dr. J and Dr. B. She completed her 2nd IVIG infusion about 4 weeks ago. We haven't noticed an improvement yet but we are remaining hopeful. It's challenging to stay positive because she's so much worse at the moment with lots of new and totally different symptoms. I'm starting to misjudge our decision and having one of those dark moments of doubt about the whole thing.

 

I wondered if anyone knew what the response of a neurotypical child or adult is to IVIG. Do they have flares of neurological issues or are they still neurotypical after they receive an IVIG treatment? I guess my strange logic at the moment is that it's PANDAS if it's responding in any way, positive or negative, to the IVIG. I get the feeling that many here are positive without a doubt that their child has PANDAS and it isn't another unknown/different cause. I keep doubting myself and hoping I'm not missing something. I know Dr.B told us it takes longer for a child with Lyme and Pandas to respond to treatment and that things could/would get worse before they get better. I guess I'm really looking for something to grasp onto at the moment that confirms we're headed in the right direction. Thanks for any insight.

[Iowadawn]

Sinberg-Glad you stopped lurking! Welcome, unfortunately. Our DS12 is a PANDAS/TBI. Our son really tanked after the 1st hd IVIG-about 4 weeks, before we started to see slow positive gains. Each HD one he didn't drop as far and didn't take as long to start in the positive direction. I am curious how often you are doing IVIG & at what dose. PM me and I can share more details.--Dawn

[Sinberg]

Thanks for the reply Dawn! Our daughter is receiving high dose IVIG and it was 8 weeks between infusions. Her next, third, HD/IVIG is scheduled 8 weeks from her second IVIG and will take place in June. This was Dr. B's recommendation. I've been wondering if she should possibly do them every 6 weeks or, alternatively, if we continue to see a worsening of symptoms maybe PEX is the way to go. I don't know.

[melanie]

I thought this might be helpful

When Danny started with the IVs Kris was an unbelievable reasource call her or email her

 

Melanie

 

 

 

 

(888) 469-9720 or email kmcfalls@igliving.com.

Kris McFalls

IG Living Patient Advocate

[sf_mom]

You might want to check out the recent thread on the Lyme Forum about this topic/herx responses. http://www.latitudes.org/forums/index.php?showtopic=13513

 

As you know many with Lyme/Pandas have had hdIVIG and for some it has helped and for some it made things worse.