IVIG Booster

[TxPANDAMom]

For those of you that have had IVIG treatments - how many have had a second round and how soon after the first did you decide to do this....what were the signs of needing a second round.... and did you see results from booster. We had out first IVIG in May - it is now October. We have DEFINITELY see improvement since the treatment. In the last month we have seen some FLIPPING as Dr. K calls it. The old symptoms come back for short periods...sometimes just for a few hours. We are still seeing signs of improvement though very slow in coming and the flipping always makes you nervous....Any signs out there that a booster might be beneficial?

THANKS for feedback in advance!

[PhillyPA]

My son got his first ivig in May. He had one 8 weeks later and then another one 4 weeks after that (in August). We are now in a wait and see mode until December. I don't know what to tell you. I guess if you are still seeing improvements that is good. I guess everyone is trying to figure out right now if more is better or is it better to wait.

[norcalmom]

We are asking ourselves same question TxPanda. had ivig in early August. We are still seeing healing. Since some docs now doing 3 +ivigs every 4-8 weeks right off the bat, wondering how that will compare to just one. Or how the timing might effect it. I'm thinking of doing one and then waiting 6 mos - year to do next. I think there is alot of evidence that there is still healing going on 3 mos - 6 mos. post ivig. I'd say we are 80%-90%. we are 10 weeks post ivig...and noticed some stuff just in last few days that tels me he's still getting better.

[GraceUnderPressure]

My impression has been that the longer the child has had it, the more likely they are to do repeat treatments?

 

Can someone tell me if that's correct? My ds18 has had sx's since 4 so if his tests come out positive (we go to Dallas Thursday for followup results - I'm a mess of anxiety & dread), and we end up going this route, well, it's looking a bit daunting (though nowhere near as scary as having the results come out negative and still having a son who is a dysfunctional mess without even the hope of some sort of treatment).