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My son had Plasmapheresis in early May. Since then the rages and violence have subsided - but still flare up if we try to make him go anywhere - like a doctors appointment. Now he does everything by Skype and basically does not leave the basement. It is not clear to us whether he is calmer because of the plasmapheresis or because we just don't make him do anything - he just sits in the basement playing video games, has not showered or brushed teeth in ages, doesn't leave the basement at all. He he is still very depressed and suicidal, and has anxiety though the roof, but he used to plead with me daily or hourly to let him die and that has decreased to the point that it is pretty rare. It only crops up when he thinks of school - which he has not been to since January and which we have given up on making him go to this month. Dr. L is now recommending Rituxin/Rituximab. We are scheduled for a Georgetown consult on Monday.

I am nervous because I have heard that it could make him flare up again - the way they do with IVIG, before starting to get better about 8 weeks after the last treatment. It has only been three and a half months since the plasmapheresis and some people say that can take longer - like 5 - 6 months. I am wondering if we should be waiting a little bit to so the Rituxin - especially if it could cause a flare up which I am not sure I have the stamina for right now.

 

At the same time - if Rituxin is unlikely to make things worse even temporarily and could get him better faster, I can deal with forcing him to the hospital (that will not be easy).

 

We have been told little to nothing about what to expect.

 

Has anyone had experience with Rituxin/Rituximab? Thoughts on waiting or going ahead with this right away?

Edited by michelleb
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Very sad for you and your son dear michellb

What is the PANS trigger of your son? Did you check for Lyme and co infection through a safe lab? ( like Igenex) Seems to have some bacteria from tick bite

PEX take out an amount of that but that returns

Before Rituxin check for Lyme and co infection

I don't know what the Pandas dr say that Lyme and co infection can be initial trigger for PANDAS and or they don't check for that or when they check they sent you in Lab with false negatives response

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Pex took about one month to help my very ill child. That happened both times she had it. Physiologically, the way it works, it should not take 5-6months.

Does your son have confirmed autoimmunity? Labs? Positive response to steroids?

If so, then yes, continuing on to the next line of tx would be appropriate and rituximab would be the next lin of tx .

I don't believe there is any true reason why there should be a flare after rituximab. Unless just anxiety for the multiple infusions causes problems! We were explained, by our doctors, that the mechanism of action does not even really do anything for a few weeks anyways.

My daughter may be getting ready to have her third round of it this month.I have very little hesitation doing it, as it did not seem to cause anything negative. And in fact it is probably a key player in her recovery.

Of course it does have some long term, very serious Associated problems, including increased risk of cancer, but at this point the risk vs benefit is worth it.

I have heard some pandas parents say that it's not a big deal to have it, And there's nothing potentially dangerous about it. That is not true. You must know That there is autoimmunity involved.

My daughter's Particular antibody is known to be responsive to rituximab.. So I guess she just got "lucky "

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Thanks both of you.

I was not able to get my son to let us take any blood by the time I suspected Lyme - but we went ahead and treated him with 90 days of Doxy. Not sure if that or the PEX, or just not making him go anywhere at all (eliminating as much stress and anxiety as possible) is what calmed the rages and violence.

I am still waiting to talk to Dr. L to get a better idea of how to proceed but hearing that this won't necessarily cause a flare is making me feel better. If it is the only way to get better I can deal of course - but we are so tired, i would need to really brace myself and the whole family to be able to deal with the violence and pleading for death to return.

 

As for his triggers - we are not sure. He did have strep antibodies but titers we're not abnormally high, he also had mycoplasma which I think is the main culprit - and massive allergies which mostly went away with the PEX. He has been on Zithromax (in addition to the 90 days of doxy) since March

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