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Can IVIG alone successfully treat pandas/pitand?


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Our son has just been diagnosed and I have wondering this question as well. He is on zithro. but I believe he has had this too long for it to be helped by abx alone.

 

Has anyone here successfully treated Pandas with regularly scheduled IVIG and no antibiotics? How many treatments did it take? What gram/kilo ratio? What was the frequency of IVIGs (monthly?)?

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Personally, I don't think this will work, based on our son's experience. He didn't have regularly scheduled IVIG, but we did 3 rounds with Dr. K. First round helped tremendously for 2-3 months, but then we had another severe exacerbation after reducing abx to a low prophylactic dose (not eliminating completely). Rounds 2 and 3 (28 days apart) did very little (20-25% improvement, max) for 3-4 months until we added the Saving Sammy dose of augmentin XR. We've since discovered that the whole family has elevated ASO, so that might explain why IVIG didn't work as well in isolation for our son.

 

So my fear is that IVIG is ineffective or temporary unless underlying infection is eradicated. I wonder if that's why some folks (besides us) have reported underwhelming results from IVIG?

 

If you were certain that the PANDAS child and whole family are definitely infection-free, then maybe IVIG alone would do the trick. Strep is so ubiquitous, though, I don't know how you shield the post-IVIG child from re-exposure. And, as others (and Dr. Swedo) have pointed out, after the autoimmune response is set in motion, any viral or bacterial infection can cause symptoms to resurge.

 

Just one (paranoid) parent's perspective. Take it with a grain of salt! ;)

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I've gotta agree with Worried Dad...

 

even if you assume that your child (and household) is completely infection (no carriers, no infection lurking in sinuses, tonsils, intracellular) at the time of IVIG...by foregoing antibiotics, you risk getting another strep infection from school (or elsewhere) which has the potential to bring you back to square one.

 

 

I suppose you could also look at it from a purely economic point of view:

Even with insurance (we've had 2 high dose IVIG's), we've paid more than a couple grand for each IVIG . Certainly it would have been a lot more, if insurance hadn't covered most of the costs (which is still the case for many PANDAS parents). Plus, when you add in the stress, 2 days in the hospital (time off work/school), travel (if not local)...IVIG isn't a "cheap" procedure (not to mention that IVIG is a somewhat limited resource). It makes sense to me to give the IVIG every chance at long term success, and if antibiotics help you achieve that, I think they are a pretty good investment.

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In our case we are convinced that the antibiotics are doing more then just "keeping strep away" -- It truly seems to have a treatment effect, anti-inflammatory, or whatever, it has a direct correlation with the ramp up of OCD/ticcing.

 

After over a year of being free and clear while continuing on full strength abx for our older d I tried to cut back this summer and she flaired--it has continued now since late July. It is no fun. We put her back on full strength right away, switched her to Augmentin XR 2000mg, and now trying a steroid burst-- but she is struggling--and it is painful to watch.

Edited by T.Mom
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In our case we are convinced that the antibiotics are doing more then just "keeping strep away" -- It truly seems to have a treatment effect, anti-inflammatory, or whatever, it has a direct correlation with the ramp up of OCD/ticcing.

 

After over a year of being free and clear while continuing on full strength abx for our older d I tried to cut back this summer and she flaired--it has continued now since late July. It is no fun. We put her back on full strength right away, switched her to Augmentin XR 2000mg, and now trying a steroid burst-- but she is struggling--and it is painful to watch.

 

 

did your dd have IVIG?

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did your dd have IVIG?

 

 

Full-long-term abx and steroid bursts (2) have been enough up to now. We are waiting to see if they will be enough again, or if more is needed (such as IVIG.)

 

I share our experience with full strength abx as these were very much a part of the entire healing process and maintenance of her health, much more then "just" preventative I believe--

 

There is no doubt that full-on antibiotics controlled OCD and ticcing for our child.

Edited by T.Mom
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That seems to correlate with our son's experience, too. He's been on Saving Sammy dose of aug XR for almost a year now. We haven't had the guts to try lowering the dose yet, and don't know when we will, because he's so much better.

 

did your dd have IVIG?

 

 

Full-long-term abx and steroid bursts (2) have been enough up to now. We are waiting to see if they will be enough again, or if more is needed (such as IVIG.)

 

I share our experience with full strength abx as these were very much a part of the entire healing process and maintenance of her health, much more then "just" preventative I believe--

 

There is no doubt that full-on antibiotics controlled OCD and ticcing for our child.

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In our case we are convinced that the antibiotics are doing more then just "keeping strep away" -- It truly seems to have a treatment effect, anti-inflammatory, or whatever, it has a direct correlation with the ramp up of OCD/ticcing.

 

After over a year of being free and clear while continuing on full strength abx for our older d I tried to cut back this summer and she flaired--it has continued now since late July. It is no fun. We put her back on full strength right away, switched her to Augmentin XR 2000mg, and now trying a steroid burst-- but she is struggling--and it is painful to watch.

 

This is very true for us as well. Frustrating, but true. If we ever find the underlying cause of the inflamation that seems to lurk beneath the surface, we will be thrilled. We use Azith. So far, blips are managed by immediate use of Advil, increase in Abx, and relious adherence to use of Omega 3's and prevacid on an everyday basis. We have prednisone in the fridge, at the ready, but have not needed to go that far in the last year. We know it is a fragile peace. I would be hard pressed to change it, and I worry at every doctors appt that we will not get the renewal.

 

So sorry to here that she is still struggling. Hope the burst puts her back in a good place.

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In our case we are convinced that the antibiotics are doing more then just "keeping strep away" -- It truly seems to have a treatment effect, anti-inflammatory, or whatever, it has a direct correlation with the ramp up of OCD/ticcing.

 

 

 

 

We, too, believe our dd receives a "treatment" benefit from her abx. She is 3 months post IVIg and we have noticed that since school started increasing her abx dose on a challenging day brings significant improvement in behavior and disminished tic and OCD interference. I have read anecdotal reports of this effect repeatedly on this forum. Dr K has prescribed the prophy dose of abx for our dd for one year post IVIg. He has called in treatment dose rxs for us when we have asked, which we did last night as a matter of fact. But is there a scientific body of literature to explain this effect? Is anyone reseraching what we are all observing?

Mary

from Michigan

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