How long do you wait between IVIG's?

[Joan Pandas Mom]

For those that have had more than 1 IVIG what time frame did you wait between the two? Thanks.

Joan

[fuelforall]

For those that have had more than 1 IVIG what time frame did you wait between the two? Thanks.

Joan

 

 

Dr K says three months to give the antibodies time to settle down.

[melanie]

we do it every 21 days(1g)

[momaine]

I thought I had read on this forum previously that when Dr's B and K talked, they agreed that between 8-12 weeks would be optimum time at 1.5g/kg.

 

That said, Dr. B has scheduled us 8 weeks apart between numbers 1 and 2. That will be next week for us. I will say that the last two weeks or so have been pretty much the same daily. I don't know if that means things have settled down or not.

 

It's hard to choose a percentage of improvement, but if I had to choose a number at this point and be a bit on the concervative side, I would say that at this point, my dd is 60-70% improved. That means, i am leaving room for 30% more improvement, but really if I had to compare how she can interact with the world NOW, compared to when she was in her worst exacerbation, the difference is night and day.

 

Dr. B told me a second treatment should bring her further relief.

[PhillyPA]

Dr. Latimer prescribed three ivig's for my son. In between 1 and 2 was 8 weeks. In between 2 and 3 there are 25 days. His third one is next week.

 

I am curious as to why there are three ivig. Any one know why?

[Worried_Dad]

Hmmm... interesting. Sounds like Dr. K is evolving his stance on this, or maybe just adjusts it based on the individual patient's situation?

 

Last summer, when our son was utterly crippled by PANDAS, Dr. K specifically advised us to do 2 full-strength IVIG procedures (1.5 g/kg over 2 days each time) 28 days apart (in June and July 2009). He said this was to make sure that we "really knocked the PANDAS out" of our son.

 

The rules are pretty gray, eh?

 

 

I thought I had read on this forum previously that when Dr's B and K talked, they agreed that between 8-12 weeks would be optimum time at 1.5g/kg.

 

That said, Dr. B has scheduled us 8 weeks apart between numbers 1 and 2. That will be next week for us. I will say that the last two weeks or so have been pretty much the same daily. I don't know if that means things have settled down or not.

 

It's hard to choose a percentage of improvement, but if I had to choose a number at this point and be a bit on the concervative side, I would say that at this point, my dd is 60-70% improved. That means, i am leaving room for 30% more improvement, but really if I had to compare how she can interact with the world NOW, compared to when she was in her worst exacerbation, the difference is night and day.

 

Dr. B told me a second treatment should bring her further relief.

[Priscilla]

we are giving 2gm/kg every 30 days, 4 total doses. Had 1st dose July 31. Next due Aug 29.

[philamom]

We are doing ivig every 8-12 weeks at 1.5g/kg.

[Joan Pandas Mom]

We are 12 weeks post IVIG on August 19th. I wonder if Dr. K. is going to recommend another IVIG then. I'm curious because my son really didn't receive a lot of relief from the first one. It did get rid of the head tic, but OCD remained OFF THE CHARTS. I'ms wondering if because he didn't receive a lot of results that he might not recommend another IVIG. Are there others who didn't see a whole lot of results from ivig #1?

[EAMom]

We are 12 weeks post IVIG on August 19th. I wonder if Dr. K. is going to recommend another IVIG then. I'm curious because my son really didn't receive a lot of relief from the first one. It did get rid of the head tic, but OCD remained OFF THE CHARTS. I'ms wondering if because he didn't receive a lot of results that he might not recommend another IVIG. Are there others who didn't see a whole lot of results from ivig #1?

 

That's interesting that tics improved but not OCD, since I've heard most folks find tht opposite, that OCD is more responsive to IVIG than tics.

[EAMom]

Is Dr. Latimer starting to recommend more IVIG now (but multiple doses)? Last year it seemed more folks were getting plasmapheresis from her.