IVIG Brands

[wornoutmom]

Does anyone know the brand of IVIG that Dr K uses/recommends? We are headed to another doc appt. to discuss IVIG after my son's positive PETscan result, and while I've done research enough to know the various brands, I'm wondering if there is one in particular recommended or used more often for PANDAS?

 

For those who have used IVIG - what should my son expect for side effects?

 

Do you have any regrets about doing IVIG?

[Worried_Dad]

Dr. K always used Gamunex for our son and recommended it if we were to arrange for local IVIG.

[faith]

worried dad,

I know you are one who has not really had a great response from IVIG...may I ask how long ago was that now? your son was under the care of Dr. K.?

[Pandas_chicago]

Wow - fate works in strange ways ....I didn't even see this post! I am actually going to see Dr. K today for this specific reason, to find out the brand and dosage that he used on my son 4 years ago and if he is still using the same today or has he refined the process.

 

When I return form the meeting tonight - I will post my findings for you!

[mom2gsd]

We use GammaGuard; been at it monthly for a year. Have not had miraculous improvements, just slow and steady. No poster child here.

[Worried_Dad]

Hi, Faith:

 

Yeah, we've done 3 full rounds (2 days of gamunex each round, 1.5 g / kg) with Dr. K. The 1st round (Oct 2008) was awesome for 2-3 months: our son improved about 70% in that time and we even got him back to school. But it didn't last; he kept catching infections (even while on 500 mg augmentin daily), and a couple of them triggered flares and then the worst exacerbation ever (in March 2009).

 

In Summer 2009 we were getting very desperate and did 2 more rounds (same dose as above) in June and July (28 days apart). This helped some, but not as dramatically as round 1; after 4 months, we'd seen maybe 20-25% improvement.

 

So at that point we were really desperate (our son was utterly crippled by OCD, tics, lability, etc.). We begged Dr. K to try the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) and he agreed. Almost immediately (within a week), our son started shedding OCD behaviors rapidly. After 5 months of XR, he's at 85% or so... best he's been in 3 years!!!

 

So IVIG round 1 made a big difference but didn't last. Rounds 2 and 3 made some difference, but slow and subtle and disappointing until we added the XR. What I can't honestly say: did the 2 rounds of IVIG last summer set the stage for the high-dose abx to maximize its effect? Not sure. Beth Maloney told me that Sammy's progress was saw-toothed, but our son (knock on wood) has seen pretty steady progress without any real setbacks. Is IVIG the difference? Wish I knew....

 

 

worried dad,

I know you are one who has not really had a great response from IVIG...may I ask how long ago was that now? your son was under the care of Dr. K.?

[dcmom]

worried dad- What is Dr K's take on why your son didn't respond to ivig?

My girls have done pex, one is improving, and one doing well. Neither is perfect.

I am considering IVIG, although will wait until at least the 1 year mark from pex, but just need to see that it REALLY works for more people.

[Worried_Dad]

You know, honestly, I'm not sure. Dr. K still seems to attribute at least some of the improvement to IVIG, but he definitely agreed at the time we started augmentin XR that we should have seen much more progress by that point. He's told us candidly that our son is one of his "most recalcitrant" cases, and he was very worried about our son's prognosis for a while. But he didn't give up, god love 'im, and he's been writing us refills for the XR for 5 months now because it's working!

 

Dr. K always says that he learns something new from every patient. I think our son convinced him of the value of higher-dose abx, at least for some non-responsive patients; I noticed via posts here that he started other kids on the high-dose XR not long after our son responded well.

 

But that doesn't work for everybody either. There are always more questions than answers with this bloody disorder, eh?

 

 

worried dad- What is Dr K's take on why your son didn't respond to ivig?

My girls have done pex, one is improving, and one doing well. Neither is perfect.

I am considering IVIG, although will wait until at least the 1 year mark from pex, but just need to see that it REALLY works for more people.