IVIG-How LONG Does It Work For?

[welshfam]

We are seriously considering doing IVIG for our daughter with Dr.K but have been reading all of these forums and are not finding any people stating that IVIG worked permanently the first time. Everybody seems to feel IVIG is worth it, but we are wondering why when most children are having to do it over and over again? Are there any children out there where IVIG worked the first time and their child has been in remission for an extended amount of time?? Any info is greatly appreciated!

[T_Anna]

How many IVIGs probably depends on many variables: your child's age, how dysfunctional they are, how long they have had PANS/PANDAS untreated, etc.

 

Our DS14 was diagnosed in late November (Strep, Mycoplasma, Coxsackie), we started anti-virals and abx, but he kept sinking further and further into the illness and finally stopped going to school or leaving the house. We tried IVIG#1 in February and he started to "wake-up" a bit, but still wasn't functioning (maybe 10% better). Last week we did IVIG #2 and he seems a bit better(20% so far?), we will continue with this until (and abx/meds) until we have our son back.

 

My understanding is that IVIG can bring them back, but really only works for a few months, the hope is that you can keep from sliding ALL the way back once your child is healthy (with CBT, Meds, supplements).

 

We did both IVIGs at home (same nurse who was wonderful and keeping her schedule open in 4 weeks). At first I was concerned about doing it at home because of the risk of anaphylaxis shock. But my son does not have Asthma and is averse to going out, so we are very happy that we did it at home, it was great.

 

According to Dr. T it can take "a few" IVIGs.

 

HTH,

T.Anna

[T_Anna]

Btw, before jumping into IVIG, try abx, and steroid burst & taper. The steroids showed improvement and gave us the confidence that IVIG may help. He is much better after the IVIG (and abx) than he was with the steroids.

T.Anna

[Hayley]

IVIG made a dramatic diffeence for my daughter. We're only a little over three months out from doing it so I can't say whether it will work for her long term, but for me it was worth it to get her back (she had gotten much better on abx alone, but the IVIG got her to 100% -- with the exception of a few days where she's off for a couple of hours but bounces back) and I'd do it again in a heartbeat to sustain the progress. One thing I do think is a factor in whether the IVIG needs repeating is immune system function. My daughter has Common Variable Immune Deficiency which, itself is often treated with IVIG. If her body can't jump in and start producing immunoglobulins on its own, she will be very vulnerable to illness and will likely get sick, end up back in a flare and need repeated IVIG. Other more experienced folks may know better, but from what I've gathered, I think a lot of kids with CVID or other immune deficiency issues have this issue and the better protected a child is naturally from infection, the longer gains from IVIG will be sustained.

[nicklemama]

There are many variables in each child's case. You cannot predict if your child will be the one that has lasting results. We've done two ivigs with Dr K. There were two other children getting IVIG at the same time as DS. They have done really well and it will be two yrs in May. DS caught pneumonia in Nov and he had IVIG two this past Nov.