increased symptoms post-IVIG

[susieq22]

My 11 year old daughter is experiencing a significant increase in PANDAS symptoms post-IVIG (2 weeks post). We are still giving ibuprofen which takes the edge off, but it's still really rough. OCD thoughts and tics are increased over baseline. She's also depressed which is a new symptom for her.

 

Any experience with what has helped your kids would be very much appreciated.

 

 

[dasu]

Interesting. I think it was LLM who reported that her child did worse after IVIG due to a herx from Lyme. Have you tested?

[susieq22]

dasu,

Yes, we've tested via labcorp, Igenex and iSpot- all negative. I've read old posts that for many kids the 4-6 weeks post-IVIG can be rough as the immune system heals. I've seen the term "turning back the pages" used to describe old symptoms re-surfacing and worsening of everything.

[LNN]

Yes, it was my son who had a horrible recovery from IVIG and it was due to undiagnosed Lyme. I do hope for your daughter's sake it is just a part of recovery.

 

My son tested negative on a Quest western blot pre-IVIG. We re-tested thru Igenex 10 weeks post-IVIG and he was positive or indeterminate on 6 or 7 bands. He had been sick with Lyme and strep for so long (2.5 yrs) prior to the first test that his immune system wasn't creating antibodies against the Lyme. The half-life of IVIG antibodies is 3 weeks, we waited 10 to make sure the Igenex test wouldn't pick up donor antibodies. But the IVIG strengthened his own immune system enough that the post-IVIG Lyme test produced antibodies against many bands. The 10 weeks of was a long herx.

 

You can talk to the IVIG doctor to see what anti-inflammatories might be an option. But if she's still struggling 2 months later, you might consider a follow-up Igenex to compare results to the first test.

[susieq22]

Thanks for sharing your story.

 

Anyone have specific advice on how long to keep a kid home from school after IVIG? She'll be on Zithromycin when she goes back and I have some hand sanitizer that supposedly lasts for 24 hours, but I don't want to send her back too early and then have to wonder if it was too soon.

[dasu]

Somehow I missed the "2 weeks" part of your first post. We were told that we would experience a bump in symptoms at the 2 week mark and sure enough we did.

 

We tried to keep the kids away from people for 4 months, but they got coxsackie from their grandparents about 2 months in and flared miserably for a month. We went about 5 months my daughter was exposed to strep on her soccer team and that started the decline again. Looking back I wish we would have kept them out for longer in hopes their immune system would calm back down. When their immune system is dysfunctional each exposure ramps up symptoms.

 

BTW, we are in similar straights. All tests say now Lyme and co-infections.

[Sirena]

Our ds7 had flaring post ivig --some symptoms improving but others worse. Our doc prescribed 3 days of Solumedrol IV which helped.