tics worse after low dose IVIG

[anonymous0121]

Hi all, I am at wits end, my son finally got IVIG last week, all be it only 40 g, not the HD I was wanting but replacement dose for his immune deficiency. so now his tics are like twice as bad, could be from the stress of it all but I am worried we made his encephalitis worse. He has had these terrible explosive barking/grunting noises that happen non stop, it hurts him so much and stressed him so bad it makes the rages worse also. anyone else experience worsening of tics after IVIG and what helped, nothing I try is helping...

 

 

[qannie47]

Did not experience that. It makes sense though that the stress of the IVIG could have brought it on. What did doc say about this?

[LNN]

My son got way worse from IVIG - tics, rages, OCD... in his case, he had undiagnosed lyme and the HD IVIG response was probably a really bad herx. But my son also tics when his body can't get rid of toxins quickly enough and/or when he has a leaky gut, so that the toxins re-enter his blood stream. Detox, diet, gut support (glutamine, digestive enzymes, nystatin, fiber and daily BMs) are helping.

 

I see tics as the canary in the coal mine. They're a symptom that something's amiss. If IVIG strengthened his immune system, it could be he's killing something and the tics are a result of the war within. Is he on abx? Have you explored detox and/or gut health or yeast? There's no single answer, unfortunately.

[airial95]

I know a mom in FL (not on these boards) whose daughter got MUCH worse after LD IVIG. It made all of her symptoms worse, including her OCD and tics. She just started monthly HD IVIG a couple of months ago and her daughter is doing leaps and bounds better.

[Hrosenkrantz]

ariel95 -- why would someone do a low dose ivig vs a high dose?

[JoyBop]

Insurance will sometimes pay for ld for certain autoimmune disorders. In some states they aren't allowed to balance bill you so you only get coverage at approved dosage.

[anonymous0121]

My son got way worse from IVIG - tics, rages, OCD... in his case, he had undiagnosed lyme and the HD IVIG response was probably a really bad herx. But my son also tics when his body can't get rid of toxins quickly enough and/or when he has a leaky gut, so that the toxins re-enter his blood stream. Detox, diet, gut support (glutamine, digestive enzymes, nystatin, fiber and daily BMs) are helping.

y

I see tics as the canary in the coal mine. They're a symptom that something's amiss. If IVIG strengthened his immune system, it could be he's killing something and the tics are a result of the war within. Is he on abx? Have you explored detox and/or gut health or yeast? There's no single answer, unfortunately.

my son has lyme and coinfections too, detox is huge for my son, we did dr data liver detox test and when he is on a bunch of meds his phase II liver pathway is too slow, major issues. he cant seem to tolerate any meds or anything. do you mind sharing what you do for detox? we are about to try nystatin, cause diflucan that use to do wonders is making his rages just worse, he cant handle any ABX, they make his stress response rages worse too, just mess up his gut neurotransmitters bad and he becomes psychotic. have been limping along with colloidal silver but that isn't helping anymore either.

[anonymous0121]

Did not experience that. It makes sense though that the stress of the IVIG could have brought it on. What did doc say about this?

he just said it may take a few infusions to see any benefit and to keep going with current low dose.... he didn't really answer me about the increase in tics.

[anonymous0121]

ariel95 -- why would someone do a low dose ivig vs a high dose?

Stanford immunologist wanted us to run t and b cells to help decide if he needed LD or HD ivig. I didn't want to poke him for just that little testing so we just took blood before the ivig and am waiting to see if quest ran the right test, I pray so... then need to schedule consult with Stanford doc again I guess to find out.

[airial95]

basically - insurance. She couldn't get HD covered, and her immuno while supportive of PANDAS (but not that well versed at the time) thought that extended LD treatments may over time have the same effect that HD had. (She had already had one HD treatment prior with fantastic results - the LD came 9 months later after re-infection). She did 4-5 monthly LD treatments and it sent her daughter into a downward spiral. She is now doing HD monthly - and her daughter is recovering well.