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Does PEX only work once?


Guest pandas16

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I believe so..or atleast that is what I have heard from Janice Zuilli. Her daughter was in the original Swedo study in the late 1990's. She received PEX and improved dramatically. She remained well until they gave her an immunization (forget which one....I believe it was the s. pneumonia vaccine...name escapes me right now...but I do know it was for recurring sinusitis) Anyway, she deteriorated badly after the immunization and Janice requested PEX again. Swedo informed her that it would not work the second time around.....they did it anyway, and Swedo was right...it did not work at all. Her daughter had to be managed with a "cocktail" of meds (as Janice put it)......until she got her period. Janice said it "just stopped" then. She is currently doing well...off all meds, but does deal with residual anxiety. Just like Dr. K says...the anxiety sticks.

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I cannot imagine a scientific reason pex would only work once. I think each case is individual, that pex will remove the circulating antibodies, but if you have not stopped the creation of antibodies- you will not have success. I also think that sometimes a major anti inflammatory treatment along with pex would be a great idea.

 

My dream treatment, for a severe episode (after testing thouroughly for infection), would be IV abx, then pex, then IV steroids.

 

I think if we really had the resources (interested docs, cooperative hospitals and insurance companies) we could stop most exacerbations by a combo of thorough testing

and aggressive treatment.

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PEX helped rid her daughter of debilitating OCD...she didn't have tics. The anxiety sticking is Dr. K's observation............doesn't mean it is true for everyone. However, in many of the cases of PANDAS kids who are now older...even adults....many deal with anxiety issues. Dr K explained the opposite to me (again, doesn't mean it is the gospel)....that the out of control OCD, tics, rages, intrusive thoughts that the kids experience, and don't know why or why they can't control it, is the fuel behind the anxiety.

 

DCmom.....all I know is that is what Swedo told Janice and it was true in her case. The PEX only had effect once. That would lead me to believe she (Swedo) had scientific reason to believe it. That would be a good question to have asked Swedo in the recent coffee talk. I can contact Janice and see if I can get more info. about it. She has always been so nice and helpful.

 

Does anyone have her (Janice's) web-site bookmarked or anything? I know many of you may not of ever had the chance to see it. I found it years ago but can't find it now. Bummer...her daughter has to be about 18 or so now...I'd love to chat with her and see how things have been going. Let me know if any of you can find it or have contact info.

thanks!

Edited by P.Mom
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Guest pandas16

It does make sense that PEX didn't work twice in Janices's case though. If you have a vaccine you're stimulating antibody production and there's nothing to do to stop it. Clearing out the antibodies won't do anything if you're body keeps producing more. I meant originally would PEX work in the event of getting strep twice? With strep, you know the cause of the antibody production (an infection) and you can stop it.

Edited by pandas16
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I agree with this statement Pandas16, to an extent, and this is where my confusion comes in. If truly just getting rid of the strep antibodies by getting rid of the strep infection would work, then antibiotics alone should do the trick. The problem, as I understand (and I may be TOTALLY wrong here), is that because of molecular mimicry, the strep antibodies start to attack the nerves in the basal ganglia, which it is seeing as strep. Then there are the B cells, which remember this, and I know the basal ganglia isn't going anywhere, so it seems like the anti-host antibodies would just continue to be produced??? I mean, it's not JUST the strep antibodies that are the problem. Everyone makes antibodies to strep when they have it. The problem is that in pandas kids, there is a snaffu, and the antibodies wrongly attack the b.g. and not just the strep. I don't know if that made a lick of sense, but that is what I wonder about why PEX or IVIG would be a cure, if the antibodies are still being produced....

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Pandas16---thanks for that explanation. I wonder then how you make IVIG/PEX work, other than keeping your child in a bubble, away from any source of infection??

Also, you seem to have a great source of info.....when you talk about inflammation, do you just mean inflammation FROM infection, or could food sensitivities have an impact? OR is that totally different? Our pandas-doc seems to poo-poo food/environmental allergies or sensitivities.

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It does make sense that PEX didn't work twice in Janices's case though. If you have a vaccine you're stimulating antibody production and there's nothing to do to stop it. Clearing out the antibodies won't do anything if you're body keeps producing more. I meant originally would PEX work in the event of getting strep twice? With strep, you know the cause of the antibody production (an infection) and you can stop it.

 

Well, I'm not sure I know what I'm talking about enough to comment, but I agree with what pandas16 is saying. I am familiar with Janice's case and it does seem that the second PEX was different because her daughter had a vaccination. Perhaps if her daughter had just had another strep infection the second PEX would have worked. But what is confusing to me is that it seems that there are people on this forum who have had PEX and it has not worked, even the first time. What would be the reason for this? Could it be because they still had an infection when they went in for PEX? Or would there be other reasons?

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PEX and IVIG have never been advertised as cures (well, except from one doc...but, personally, I believe that claim is totaly false) I like how Dr. Trifiletti put it....if your child is having a rough time, IVIG or PEX provides a strong, fast "cooling off". So, if your child is not getting back to where they can function well, then IVIG or PEX can bring them around to that point and put them into remission. But, proph. antibiotics are critical afterward to keep them doing well because, in my opinion, another strep infection, mycoplasma, vaccination, etc., will most likely bring back PANDAS symptoms. However, they may not be as severe and, your child may not react to as much "stuff" after IVIG or PEX.

 

I am not sure I am getting the difference of an immunization and strep with PEX. Both stimulate the immune system and produce antibody production......wouldn't PEX remove the antibodies from the vaccination just as it removes the antibodies from strep? Confused.

 

I think failure of PEX with many kids is that the immune system just replaces the bad guys after they are removed. Or maybe, some kids have too many antibodies and they aren't all successfully removed with PEX? Dunno....just guessing. But, I think it is pretty clear that IVIG and PEX are no cures, but, very helpful tools to put your child in remission...or atleast a better state.

 

 

 

Interesting stuff I found about Guillian-Barr syndrome....an autoimmune atack....in many cases has been induced by vaccination. It states that treatment is with IVIG or PEX. So, I think that PEX should be just as effective with vaccine induced problems as it is with strep. Don't know why Janice's daughter didn't respond the second time, although I'd love to know how Swedo knew that...maybe it was the time frame. Note what it says about the effectiveness of treatment after two weeks from onset of motor symptoms. (I know these are different disorders, but, same kind of mechanism...interesting to me)

 

 

 

"Once the patient is stabilized, treatment of the underlying condition should be initiated as soon as possible. Either high-dose intravenous immunoglobulins (IVIg) at 400 mg/kg for 5 days or plasmapheresis can be administered,[19][20] as they are equally effective and a combination of the two is not significantly better than either alone. Therapy is no longer effective two weeks after the first motor symptoms appear, so treatment should be instituted as soon as possible. IVIg is usually used first because of its ease of administration and safety profile, with a total of five daily infusions for a total dose of 2 g/kg body weight (400 mg/kg each day). The use of intravenous immunoglobulins is not without risk, occasionally causing hepatitis, or in rare cases, renal failure if used for longer than five days. Glucocorticoids have not been found to be effective in GBS. If plasmapheresis is chosen, a dose of 40-50 mL/kg plasma exchange (PE) can be administered four times over a week."

Edited by P.Mom
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