Help: Anyone ever experience this IVig protocol?

[Pandasphilly]

Our Pandas Neurologist is recommending the following IVIG protocol for my son. Please weigh in if you have ever heard of or experienced this IVIG protocol, or please just share your opinion in general.

 

Month 1: IVIG 2gram/kilo over 2 days (we just received this)

 

Months 2 through 6: IVIG 1gram/kilo over 1 day

 

 

I am fearful he should be receiving 2g/k over 2 days. It seems like months 2-6 are only half a dose, albeit more frequently. Any thoughts????

[NancyD]

My DD did something similar back in 2008 for almost a year and the lower dose infusions were problemsome. I feel like they undid so much of what the HD infusion did for DD. We ended with a HD infusion and then stopped. In hindsight, if I had to do it all over again, I would have done one HD infusion and then repeated it after 3 mos (without any LD infusions).

 

It is normal protocol to do 2g/kg over 2 days.

Edited May 2, 2013 by NancyD

[Pandasphilly]

My DD did something similar back in 2008 for almost a year and the lower dose infusions were problemsome. I feel like they undid so much of what the HD infusion did for DD. We ended with a HD infusion and then stopped. In hindsight, if I had to do it all over again, I would have done one HD infusion and then repeated it after 3 mos (without any LD infusions).

 

It is normal protocol to do 2g/kg over 2 days.

 

Nancy, thanks for your reply. I'm wondering.... Do you consider 1g/k over 1 day to be low dose? That's where I'm confused. I guess I'm thinking its a half dose which is probably the same as low dose. Reaching our neurologist for clarification is near impossible.

 

I know our autoimmune doctors believe low dose to be .4grams/kilo.

[beeskneesmommy]

2g/1k was Dr. latimer's dosage for my son, age 6, 45 lbs, last Sept. We only did it once, without consecutive IVig's thereafter, but he tolerated it very well. We will be doing the same dose in a couple of weeks.

[Pandasphilly]

2g/1k was Dr. latimer's dosage for my son, age 6, 45 lbs, last Sept. We only did it once, without consecutive IVig's thereafter, but he tolerated it very well. We will be doing the same dose in a couple of weeks.

Hi B,

Tried to PM you and it says you cannot receive messages. Just an FYI, wasn't sure if you are aware.

[NancyD]

Sorry, I don't know if MDs consider 1g/kg to be low dose or not. We found 1.5g/kg worked well for DD. Anything lower did not. And we tried .4, .5, .75, 1, 1.5, and 2g/kg.

 

 

 

 

My DD did something similar back in 2008 for almost a year and the lower dose infusions were problemsome. I feel like they undid so much of what the HD infusion did for DD. We ended with a HD infusion and then stopped. In hindsight, if I had to do it all over again, I would have done one HD infusion and then repeated it after 3 mos (without any LD infusions).

 

It is normal protocol to do 2g/kg over 2 days.

Nancy, thanks for your reply. I'm wondering.... Do you consider 1g/k over 1 day to be low dose? That's where I'm confused. I guess I'm thinking its a half dose which is probably the same as low dose. Reaching our neurologist for clarification is near impossible.

 

I know our autoimmune doctors believe low dose to be .4grams/kilo.

Edited May 3, 2013 by NancyD

[SurfMom]

Yes, that is DD's protocol. She will be on month four of 1 g. in a few weeks. She deteriorated severely after the first treatment, has bottomed out and now making slow gains. I am not convinced that her decline or her improvement are tied to IVIG at this point.

[airial95]

We are doing 1.5/1kg over 2 days every 2-3 months. However, I know someone else here in FL that is doing 1g/1k over 1 day every month. Her daughter seems to be doing very well with it. He daughter had 2/1k over 2 days the first time she had IVIG, but that was over a year ago, and she regressed.
The 1/1k over 1 day was all she could get approval for this time around, but it seems to be working for her as long as it is monthly. So the protocol your doc is recommending may work - especially if they start with the higher dose.

[beeskneesmommy]

 

2g/1k was Dr. latimer's dosage for my son, age 6, 45 lbs, last Sept. We only did it once, without consecutive IVig's thereafter, but he tolerated it very well. We will be doing the same dose in a couple of weeks.

Hi B,

Tried to PM you and it says you cannot receive messages. Just an FYI, wasn't sure if you are aware.

@PANDASPHILLY: Not sure why it did not let me get messages. It is not disabled...

[T_Anna]

We did two IVIGS at 2/1kgHD over two days and will probably do another one after we draw blood for the Cunnigham test...hopefully next week.

T.Anna

DS15

[Hayley]

We did 2g/kilo once with no subsequent. That was five months ago. It was completely transformational. I'd say she really hit 100% recovery around two months after the IVIG. Is the plan for subsequent IVIG set in stone or is it an "as needed" type thing? I'm no doctor, but it would seem to me that if your child is on a good path with the single dose, it might be premature to do another (at any dose) at two months.