timing of IVIG treatment

[junkyardjean]

When to do IVIG treatment? I have followed some of your stories through past posts, and am wondering if you have any advice. My DD4 is just starting on her journey - January 2012 was the first time her PANDAS symptoms got to the point of interfering with her day to day life. The next was March, then a couple of other blips, but not like Jan & March. Now she is doing relatively okay. I'm sure the summer will be okay as the "bugs" tend to lay low, but I am worried about Oct/Nov when they all wake back up again... She is currently reacting to any virus/bacteria/strep that is around her.

 

Is there benefit to us pursuing IVIG now? Should we wait until her symptoms are bad again? Will having IVIG when she is doing okay have any benefit?

 

There is so much experience on this board - because dd is 4 and we are just starting this journey, I am so thankful to have a place to ask my seemingly millions of questions....

[NancyD]

Have you ruled out any other underlying infections, such as Lyme (through IGeneX testing, not standard WB), Bartonella, Babesia, Ehrlicliosis, MycoPlasma, XMRV, etc.? If not, I would do that first before considering IVIg. Even with IVIg your DD's remission could be short-lived if there are other underlying infections.

 

Have you seen one of the PANDAS experts (i.e., Dr. L, B, T, K, M)? Or checked into the NIH IVIg study?

 

When to do IVIG treatment? I have followed some of your stories through past posts, and am wondering if you have any advice. My DD4 is just starting on her journey - January 2012 was the first time her PANDAS symptoms got to the point of interfering with her day to day life. The next was March, then a couple of other blips, but not like Jan & March. Now she is doing relatively okay. I'm sure the summer will be okay as the "bugs" tend to lay low, but I am worried about Oct/Nov when they all wake back up again... She is currently reacting to any virus/bacteria/strep that is around her.

 

Is there benefit to us pursuing IVIG now? Should we wait until her symptoms are bad again? Will having IVIG when she is doing okay have any benefit?

 

There is so much experience on this board - because dd is 4 and we are just starting this journey, I am so thankful to have a place to ask my seemingly millions of questions....

[LNN]

I second Nancy's advice to make sure there are no underlying infections. When my son couldn't sustain remission, it was because he had lyme as well as pyroluria (which is a genetic zinc/B6 deficiency). I would also make sure underlying methylation issues have been explored. My kids both found remission by looking at this.

 

As for timing, when I was doing as much research as I could prior to my son's HD IVIG, it seemed that the published research was focused on using IVIG to halt a current flair, not as a cure or way to prevent future episodes. It was more of a tool to end the flair. I know that some doctors use the word "cure" and feel repeated IVIGs can eventually stop the body from having an autoimmune response. Based on a recent thread, it seems a mixed bag as far as this goes.

 

So I think it depends on what you hope to accomplish from IVIG. The only research I ever found suggested it be done during a flair (of course, kinda hard to get insurance approval and schedule an appt ahead of time if you don't know when the next flair will be). I think different doctors have different views on the subject.

[junkyardjean]

We have connected with Dr. K - he was leaning toward IVIG. He said that Zith would help provide temporary, effective relief (she can't do aug as it is amoxil based and we most likely had serum sickness after amoxil - not worth the risk), but that symptoms would return. He also said that we have time to decide as she is doing okay now.

 

She falls out of the study as she has a past diagnosis of RF from november (which dr. k thinks was actually serum sickness, but the RF diagnosis is currently on her file until we can get through further assessments as directed from Dr. K.)

 

I am going to ask family dr to rule out some of the possible co-infections - some have already come back negative, but there are some in your list that have not been checked yet.

 

I guess my main thought is this - if she has the IVIG treatments now (after ruling out other infections), will that help save her from future relapse? Or is IVIG more about helping current symptoms? Would IVIG help stop things from getting worse in the long run?

 

i guess I'm struggling with the when question - does IVIG make sense to prepare to do now as more prevention, or do we wait until she is incapacitated again, and then look into getting it done?

 

We are in Canada, so going the IVIG route will be expensive (have to do in states and pay out of pocket). We are also working with ND, so we haven't ruled those options out either. Million dollar question we all ask ourselves as parents "what is the right thing to do???"

[junkyardjean]

Thanks for the replies!

 

I was typing my next response and posted it and then realized LLM replied and answered my questions! Well done....

 

That really helps to clarify - I will be writing down all of the possible co-infections listed on this thread and will research other posts to get as complete of a list as possible to take to family dr. tomorrow.

[NancyD]

I'll PM you a list of tests to rule in/out.

 

Thanks for the replies!

 

I was typing my next response and posted it and then realized LLM replied and answered my questions! Well done....

 

That really helps to clarify - I will be writing down all of the possible co-infections listed on this thread and will research other posts to get as complete of a list as possible to take to family dr. tomorrow.