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Protocol for plasmapheresis/PEX


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I am a mom of an adult son with severe PANDAS symptoms and autism. I will follow-up with an intro. My son has been referred to a hematologist for plasmapheresis having had ABX and steroids. It seems that the docs use different protocols for administering plasmapheresis or plasma exchange as a treatment for PANDAS. DCmom states "Swedo did 5 pex treatments over 10 days in the study, my girls had 3 treatments over 4 days.". What factors into the decision to do pex v.s. plasmapheresis? Is there a recommended protocol for the the number of treatments and the length of the interval between each treatment and future sessions? Dr. K's website recommends IVIG following plasmapheresis./pex. Are most kids getting this? In addition to prophylactic antibiotics, what immune modulating therapies are used to control the reproduction of autoantibodies? Sorry for so many questions; I just haven't found that much published on this. Thank you.

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two of my children have had pex for PANDAS~

My daughters had their own plasma removed and replaced with a filler.

They each had their plasma volume (based on weight) x 4.5 exchanged over 3 days.

They each had central lines (one femorally and the other in her neck).

IVIG as not done until 4 months for one daughter. She had been sick with PANDAS for only abotu 18 months when it started and in that very severe exacerbation for about 6 weeks.

The other daughter had been sick for 3 years (& in severe PANDAS state for almost that long)It helped- but it took 4-5 weeks and then the success lasted for only a few weeks. She had her second pex 3 months after the first and IVIG was recommended 4 weeks post pex. She will be getting IVIG- but it will not be until 7 weeks post. There are several reasons for that- but our doctor does think IVIG post pex (and it was recommended monthly x 6) is key.

As far as immune modulating therapies... sign me up! I have gotten little hints of drs wanting to try rituximab or cellcept-- but no one in practice yet- as far as I know-- for PANDAS, anyway.

Autoimmune encephalitis- yes- but PANDAS, not yet!

How long has your soon been sick-- it is clearly PANDAS?

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My son had 5exchanges over 5 days. He gets ivig every 21 days and has for over 2years. I don't know if I see anything from the PEX as of yet 21/2weeks

He too has ASD. I don't know if there is any true answer to your question. I kind of think the answers will come from someone here.

 

Melanie

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" How long has your son been sick-- it is clearly PANDAS? It is autoimmune encephalitis. The strict definition of PANDAS excludes him by age although adult variants exist informally. He had elevated titers to strep, mycoplasma and pneumococcus. He had his first sudden onset of symptoms in June 2010. He gradually improved in the typical "sawtooth" fashion, though not to baseline. In July 2011 he had another acute severe exacerbation. It responded dramatically to prednisone but he relapsed when the prednisone was tapered away. He is now worse than at initial onset and the former dose of prednisone is not having any effect. It may need to be increased while we await plasmapheresis. When I look back, I am inclined to believe a set of symptoms he had at 15 years of age was probably its first occurrence.

 

 

two of my children have had pex for PANDAS~

My daughters had their own plasma removed and replaced with a filler.

They each had their plasma volume (based on weight) x 4.5 exchanged over 3 days.

They each had central lines (one femorally and the other in her neck).

IVIG as not done until 4 months for one daughter. She had been sick with PANDAS for only abotu 18 months when it started and in that very severe exacerbation for about 6 weeks.

The other daughter had been sick for 3 years (& in severe PANDAS state for almost that long)It helped- but it took 4-5 weeks and then the success lasted for only a few weeks. She had her second pex 3 months after the first and IVIG was recommended 4 weeks post pex. She will be getting IVIG- but it will not be until 7 weeks post. There are several reasons for that- but our doctor does think IVIG post pex (and it was recommended monthly x 6) is key.

As far as immune modulating therapies... sign me up! I have gotten little hints of drs wanting to try rituximab or cellcept-- but no one in practice yet- as far as I know-- for PANDAS, anyway.

Autoimmune encephalitis- yes- but PANDAS, not yet!

How long has your soon been sick-- it is clearly PANDAS?

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powpow-

 

I had a doctor (of course an adult rheumy who "can't" treat my kids, yet was interested and met with us with another doc) suggest low dose cellcept. He said they are having great luck with it for kids with lupus. He thought it would be a way to get out in front of the illness and prevent dramatic episodes, rather than chasing it and putting out fires.

 

Never found another doc even interested in discussing.

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HI dcmom! It was a rheumatologist who recommended Enbrel for my child, once we finished treating her infections (known lyme & very high EBV). This was even before we ever saw our PANDAS doctor. Our PANDAS doctor and another doctor who we spoke with (parent to parent, not as patient/doctor relationship) both think this is a great avenue, but as yet, no one really seems to go for it yet.

I did see a youtube video by Dr Jory Goodman (I think that was his name) called the Evil Scourge of PANDAS and he mentioned interferons as treatment. Sounds good to me!

 

momofadult-- your child (with the prednisone effect and worse than inital onset presentation) sounds similar to mine, though she is only 13 now & strep was not a known factor. My other child had clear strep onset & strep with exacerbation.

Have you read about anti-NMDA receptor encephalitis? That usually progress to hypoventilation and seizures, but not always. Where do you live?

We are a month post pex and we are seeing big improvements- my daughter is also on small dose valium BID and riluzole now.

I have found steroids have been so helpful to my children.

Best Wishes to you. Feel free to PM me if you want.

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Melanie, I hope you will see benefits for your son very soon!

 

 

My son had 5exchanges over 5 days. He gets ivig every 21 days and has for over 2years. I don't know if I see anything from the PEX as of yet 21/2weeks

He too has ASD. I don't know if there is any true answer to your question. I kind of think the answers will come from someone here.

 

Melanie

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Thank you for the mention of anti-NMDA encephalitis. My reading of this doesn't seem to fit his profile. Good? We see the hematologist tomorrow and I am hoping he can set up the PEX for my son asap since he is continually worsening. I am glad the PEX was a big help for your daughter. I am praying for the same for him. This is an awful illness! BTW, we live in Northern California.

 

 

HI dcmom! It was a rheumatologist who recommended Enbrel for my child, once we finished treating her infections (known lyme & very high EBV). This was even before we ever saw our PANDAS doctor. Our PANDAS doctor and another doctor who we spoke with (parent to parent, not as patient/doctor relationship) both think this is a great avenue, but as yet, no one really seems to go for it yet.

I did see a youtube video by Dr Jory Goodman (I think that was his name) called the Evil Scourge of PANDAS and he mentioned interferons as treatment. Sounds good to me!

 

momofadult-- your child (with the prednisone effect and worse than inital onset presentation) sounds similar to mine, though she is only 13 now & strep was not a known factor. My other child had clear strep onset & strep with exacerbation.

Have you read about anti-NMDA receptor encephalitis? That usually progress to hypoventilation and seizures, but not always. Where do you live?

We are a month post pex and we are seeing big improvements- my daughter is also on small dose valium BID and riluzole now.

I have found steroids have been so helpful to my children.

Best Wishes to you. Feel free to PM me if you want.

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My daughter had 6 plasmapharesis treatments, twice weekly for 3 weeks on an outpatient basis. They had originally said possibly 5 treatments, then after the 5th one, they said six. They explained to me how they calculated how many treatments were necessary, but I wasn't really focused at the time. It has to do with body weight, blood volume etc.... There seemed to be a lot of math involved as the nurses were constantly using calculators and recording data from the plasma machine.

 

By the second treatment, it was a noticeable difference. She has been symptom free since March, and is still on prohpylactic abx. She has never received IvIg and there aren't any plans to do so.

Edited by oivay
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" How long has your son been sick-- it is clearly PANDAS? It is autoimmune encephalitis. The strict definition of PANDAS excludes him by age although adult variants exist informally. He had elevated titers to strep, mycoplasma and pneumococcus. He had his first sudden onset of symptoms in June 2010. He gradually improved in the typical "sawtooth" fashion, though not to baseline. In July 2011 he had another acute severe exacerbation. It responded dramatically to prednisone but he relapsed when the prednisone was tapered away. He is now worse than at initial onset and the former dose of prednisone is not having any effect. It may need to be increased while we await plasmapheresis. When I look back, I am inclined to believe a set of symptoms he had at 15 years of age was probably its first occurrence.

 

 

I was going to ask you if you were certain this was truly his first onset or that maybe it was not as severe in the past, and you didn't realize what was going on, and then I read your comment that it may have started at 15 years of age. I'm truly wondering if it maybe started even before that, as my DS was diaganosed at 15 when he became suicidal...the 2nd time we realized it might be PANDAS and tried abx...it was a miracle! The only reason we recognized it as PANDAS at that time was because his younger brother had more classic onset (that still took 4 years to get a dx), and we had additional information at that point. Otherwise, we would still not know, and I hate to think if he would even still be alive!

 

But, I came across a writing journal of his from 1st grade about 2 years ago, and sure enough...there was the evidence...major changes in handwriting overnight. Then, I thought back about separation anxiety that I didn't think about at the time as being anything more than just a very sensitive kid. And then there was the time when I left him and his father at a restaurant (he was maybe 2 1/2 years old) to go to a meeting, and my DH said that he screamed and cried inconsolably for hours.) He also had an allergic reaction to the MMR vaccine...could that have been the start? And, he was born with ABO incompatibility (got my blood and his mixed in utero), and he was born was terrible jaundice. Could that have been it? Who knows, but I am certain it did not start at 15, even though that's when we put 2 and 2 together.

 

In answer to your question, both my boys have had PEX and IVIG, and both have helped a lot. PEX helped longer, and I would recommend it if you can get it. PM me if you want more information.

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My daughter had 6 plasmapharesis treatments, twice weekly for 3 weeks on an outpatient basis. They had originally said possibly 5 treatments, then after the 5th one, they said six. They explained to me how they calculated how many treatments were necessary, but I wasn't really focused at the time. It has to do with body weight, blood volume etc.... There seemed to be a lot of math involved as the nurses were constantly using calculators and recording data from the plasma machine.

 

By the second treatment, it was a noticeable difference. She has been symptom free since March, and is still on prohpylactic abx. She has never received IvIg and there aren't any plans to do so.

Hi oivay,

 

so happy to hear that ur dd is doing well, but i am curious, why did u go right to plamapharesis and not try ivig first? How old is she?

 

thx,

mom2yo

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Thank you for your response. It appears as though the post-PEX protocol varies with the child (as it should)and the treating physician. I am hearing: PEX followed by no other treatment, PEX on an interval basis, PEX followed by prophylactic antibiotics, PEX followed by IVIG, PEX followed by immunosuppressive therapy and combinations thereof. Well we know what worked for your daughter! I am glad she is doing so well. What a joy it must be to have her back.

 

 

My daughter had 6 plasmapharesis treatments, twice weekly for 3 weeks on an outpatient basis. They had originally said possibly 5 treatments, then after the 5th one, they said six. They explained to me how they calculated how many treatments were necessary, but I wasn't really focused at the time. It has to do with body weight, blood volume etc.... There seemed to be a lot of math involved as the nurses were constantly using calculators and recording data from the plasma machine.

 

By the second treatment, it was a noticeable difference. She has been symptom free since March, and is still on prohpylactic abx. She has never received IvIg and there aren't any plans to do so.

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I'm not quite sure why we didn't do IvIg. Her regular doctor was totally against IvIg (her exact words were "I don't care how safe they tell you it is, it's a pooled blood product.), and the others (neuros) didn't even suggest it. Maybe it was the cost? It was about $11,000 per treatment for the PEX. Maybe it had something to do with her dual diagnosis? She was dx'd with both Pandas and Sydenham's, and her symptoms were predominantly severe chorea and tics, although the Cunningham test showed Pandas.

 

Thankfully, the PEX worked, and it was pretty obvious by the second treatment that it was helping and all movements had stopped before the third treatment. So far it's been almost nine months and she's been pretty much normal(aside from normal 12 year old girl drama).

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