any luck with a second IVIG?

[croatianmum]

Is there anyone who had verry little or no improvement with a first IVIG, but a second one made a different?

My son is 13 allready..

 

Really need some encouregement..

[bigmighty]

DS's 1st IVIG resulted in about 10% of areas improving, but about 10% of new behaviors and worsening in different areas - so sort of a wash, overall. After the 2nd IVIG, I'd say he was at 85% improved within about three weeks. Yes, sometimes the 2nd has more benefit.

[T_Anna]

We had a second IVIG 3 weeks ago. DS 14 showed some improvement, maybe 5%, but we still have hope.

 

T.Anna

[ptcgirl]

This is what I've learned through the IVIG process. My DD13 just had her 6th one. Some of the IVIGs were hugely successful and others were kind of blah. I've finally figured it out although it will seem obvious when I state it. When she had an active infection that was not being treated the results were not as good (still an improvement, but nothing in comparison). When she was infection free, the results have been glorious and amazing. IVIG is a reset button for her.

 

I like to think of this analogy: if you have a vacuum that has a clog that you don't (or can't!) remove, no matter how many times you hit the reset button (a button designed to tell the vacuum it is okay to start trying again) it still isn't going to suck up your dirt/work properly. Now, if you take the clog out, AND hit the reset button , then the vacuum starts to work well again. It may still have a few bumps along the way of course because dirt is always coming at it, but it still functions and works. Until the next clog.....

 

This is just the way I view it from our experiences. I'm hopeful that we are building up her immune system so she doesn't get so clogged. She just got over a virus and seems to be okay, so I think (praying!!!) that she's finally getting to a point of not having to get the IVIGs (or at least as often). They have been a true life saver for my daughter. She had PANDAS since just before age 7 and we were really afraid nothing would work. She is about 90%. So worth everything we've paid ($ we had to ask family for), the travel (we 2000 miles each IVIG), homeschooling, etc. We have our beautiful, sweet daughter back. I worry all the time that we will lose her again, but I cannot over state how much they've helped.

[croatianmum]

Oh, that's so great to hear.You all gave me hope.

 

We are preparing for the second IVIG, before we do that whe also needs a tonsilectomy (sorry for my english writting).

 

Can You maybe tell me for which infektions I need to look? His ASO titer is 270 for the last few month; and since we live in Europe; it would be helpful to know where and what kind of infektions are most coomon in PANDAS children?I'm reading here about bartonella; mycoplasma pneumonia, Lyme ecc. Is this engough?

 

What would You suggest? Wich tests do we need to make? We are lucky that the doc. here would prescribe all the neccesary testings as far as know wich ones?

[Hopeny]

For Lyme and bartonella testing infectolab in Germany seems to be very knowledgable