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Lydiasmum

scary extract from Web Pediatrics re. antibiotics

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Stumbled across this tonight whilst searching for answers yet again. Scares me. DD been on prophylaxis just over a year with good results (95% better, 5% is manageable). Can anyone chime in and give me more hope? Thanks,

 

ADDENDUM: we have followed several patients in whom the initial antibiotic treatment resulted in complete resolution of symptoms for almost 6 years. Unfortunately ALL of these patients had recurrence and had to be treated with IVIG. Thus it is our experience that all patients with pandas will eventually become antibiotic non-responders......

Edited by lydiasmum

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For what it is worth--- that is dr k's website.

Not denying the accuracy of his report, just letting you know from where it comes...

 

And Dr. K. is a very big proponent of IVIG as THE appropriate response to PANDAS/PANS. He is speaking from his experience, which undoubtedly has depth; however, this is not reporting on the results of a clinical trial or anything beyond "professional anecdotal" information.

 

Anyone know when the NIMH's abx trial will be concluded and reported upon? I admit I haven't been keeping up; have they closed that trial, or are they still accepting participants?

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Yes, this is Dr. K. This is his viewpoint based on his medical hands on experience. We did experience this with my son. The first initial abx worked like magic. By the time we got to the 4th flare, abx stopped working to reduce symptoms 80-100%. When they stop working, it is then that he feels that IVIG is a possible solution.

 

That being said, it seems that there are the "responders" and the "non responders". I am sure you all have heard this before. The odd thing is that kids whom respond well to a steroid do well with IVIG. Kids whom do poorly on steroids seem to not benefit as greatly from IVIG. I do not think science has these answers yet, unless I have not read that particular part of research....Same thing with regards to why abx stopped being as effective.

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From personal experience, my son was on antibiotics for six years and did not become a "non-responder". He stayed on the same dose that worked for him and kept his symptoms under control. When he was 17 we weaned him off and he stayed symptom free.

 

All these children respond differently. It is very hard to make generalized statements. I have 3 PANS kids and they are all different in their presentation, and in how they have responded to treatment.

 

Dedee

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Very true Dedee, each case is unique unto itself too a certain degree.

 

One of the things that I think is great about the Pandas conferences that are held is that while each doctor may have a different opinion on certain aspects, they all come together and are respectful to one another in the united quest to understand and treat Pandas.

Edited by qannie47

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Is there a difference in abx response if you have PANDAS due to strep or PANS due to Lyme or some other infection? I was under the impression (I don't know why) that IVIG is not recommended for Lyme and co.

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Hi,

 

I was wondering the same thing.

 

Is it OK to do steroids or IVIG if have lyme? What if your just not sure if lyme or co-infections still exists?

 

This all started for my DS (24) because of lyme...all bands positive and RMSF. Two years after onset babesia now positive as well.

 

Fast forward to now: only 2 bands positive for lyme, babesia still high (1024) normal is 256.

 

The more test we do for lyme the more different results we get. Advanced labs says no lyme, Igenix says yes.

 

Neurologists wants to do IVIG...just not sure if we should....although I am seriously considering it....NOTHING as worked thus far.

 

Also what can happen is lyme DOES exists...will he get worse?

 

frikfrak

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I'm not well-versed in lyme, but I have been a participant on the forum for many years now.

 

I would search the forum for threads with "IVIG" in the title; I think you'll find at least some anecdotal answers there. It's my best recollection that there was at least one well-known PANDAS/PANS treatment provider -- an immunologist, in fact -- who felt that IVIG in cases in which lyme was the primary culprit, was not the best course of treatment. However, this illness and the treatment protocols certainly have evolved over time, and there are probably more contributing factors to the appropriate treatment method than the original "instigator," whether lyme, strep, myco p,, etc.

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Just my 2 cents, from what I have gathered while I have been here:

 

If the prophylactic abx is sufficient to address whatever infection is causing PANS/PANDAS, then you will see resolution.

 

If there is multiple infection involvement then 1 abx may not be sufficient, especially if the infections are of different types (intracellular, extracellular, or cyst formers) and more comprehensive treatment will be required.

 

A couple years back, quite a few people in the lyme community jumped on the IVIG wagon and seemed to find some short term resolution of symptoms. However improvement was often not lasting. I would imagine because any remaining infection would continue to produce the problematic antibody response.

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My experience has been that IVIG is not lasting. My son has never had a known tick bite. We found out last year that he was positive for ehrlichia and anaplasma. You don't get those without being bitten by a tick. This year, his Igenex was positive for lyme. IVIG did not make it worse. It justdidn't last. I never in a million years would have thought my son had lyme. However, he never tested positive for strep, so that explains it. We are 5 years in from his original episode.

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Before we found Lyme (and I've never seen a tick) we did 2 HD-IVIG's for dd, then 6 yrs. old, about 6-7 weeks apart.

1st one was rage city, 2nd one was a bloody miracle right out the gate- happy, content, wonderful play w/ sister, etc.

Until it wore off 4-6 weeks later.

Having said that, and after many treatments for infections 3 years later,

if we were offered a free (key word: free) high dose IVIG right now,

I'd do it for her. Although her IgA is a little low, and that scares me for IVIG.

We paid cash for the first 2, and even if insurance paid for a new one,

we'd have to pay 20% of it.

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