getting worse with HD IVIG

[anonymous0121]

hi all, my son just got his 3rd HD IVIG and he has gotten worse and worse over the past three months, it is just unbearable, tics have become so severe and non stop, rages more violent and OCD/fears worse.... was hoping the IVIG was going to turn around the PANS and get his immune system working right, he has CVID and low igM. He has chronic lyme and bart and just found out roundworm, blastocycstis (protozoa) and major yeast going on and chronic chlostridia and reoccurring other infections in the gut along with I think major yeast overgrowth and virus's.... been treating all these for so many years I have lost track ..... any recommendations, I cant stop crying I am so heartbroken for him. psych meds have just made things worse too. I don't know whether to continue with the IVIG or not.

 

deborah

[Hrosenkrantz]

Deborah, im so sorry. What does your doctor, out of curiousiity, say you should do?

[SSS]

I usually don't share this, and have no idea if it will help,

but my (our) heart goes out to you.

 

After our 1st HD- IVIG, we had rages. About 2-3 weeks after, I was doing a phone consult with

another treating PANS MD I was using as a 2nd opinion with phone consults,

and this Dr.s opinion was that the rages meant bacteria, and recommend 3 weeks of Vancomycin.

I had said, we just had an OAT test done,

no clostridia came up-

nonetheless, we did the 3 weeks of vancomycin (she'd never had it before)

and it did work.

I know you said you've been treating your son's gut infections for years,

keeps coming back-

Have you looked into fecal transplant?

I don't suggest that lightly,

but re- occurring clostridia....

I'd consider it in that case.

Hang in there---

[HT's Mom]

Has your son been tested for lyme? My understanding is that where pandas patients have had bad reactions to IVIG it is very often because there was undiagnosed lyme. LLM had this experience with her child. You can pm her or look for her posts about this.

[SSS]

At the time we did our 2 HD IVIG's (6 weeks between), we did not know about Lyme and Bartonella infections.

As I said, after the first HD IVIG, we had rages, that calmed with 3 weeks Vancomycin (maybe it killed off Lyme.)

She then got exposed to a classroom full of strep, and it all seemed to amp up again, so did another IVIG.

 

And, after the 2nd HD IVIG, immediately after, we were GOLD. My dd was happy, content, no OCD, playing, joyful.

And 6-8 weeks later, it all seemed to wear off, as the IVIG wore off and left her body.

She was not re-exposed to anything, I kept her home from school/ turned into summer.

It's hard to figure out-

was there magic antibodies in the 2nd IVIG?