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Why NO turning of the Pages with PEX


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Looking for knowledgeable answers or ideas on this one. If PEX removes antibodies, and we all know inflammation takes months to resolve, why do kids after PEX see immediate improvement with NO turning of pages or limited amounts? Some after IVIG have immediate symptom resolution, others have a turning back of the pages for an hour or two a day, OTHERS have complete set backs worse than expected for weeks after IVIG. If Cunninham is looking at several different antibodies, and I have been told that they think OCD and tics may be caused by different antibodies could't the IGG's we are downloading into the kids bodiies contain some of these antibodies????? Causing a set back???? The mouse model use mice with weak blood brain barriers and gave them IGG's. Are these the same IGG's in IVIG? If anyone can tell me which antibodies were given to the mice I would like to Know? Dr K says you will see many symptoms you haven't seen in a while come back after IVIG. No one says this after PEX. Thanks for your help.

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Looking for knowledgeable answers or ideas on this one. If PEX removes antibodies, and we all know inflammation takes months to resolve, why do kids after PEX see immediate improvement with NO turning of pages or limited amounts? Some after IVIG have immediate symptom resolution, others have a turning back of the pages for an hour or two a day, OTHERS have complete set backs worse than expected for weeks after IVIG. If Cunninham is looking at several different antibodies, and I have been told that they think OCD and tics may be caused by different antibodies could't the IGG's we are downloading into the kids bodiies contain some of these antibodies????? Causing a set back???? The mouse model use mice with weak blood brain barriers and gave them IGG's. Are these the same IGG's in IVIG? If anyone can tell me which antibodies were given to the mice I would like to Know? Dr K says you will see many symptoms you haven't seen in a while come back after IVIG. No one says this after PEX. Thanks for your help.

I think with Mady Hornig's mouse model, they gave the BBB weakened mice antibodies from mice who had produced an immune response to GABHS (antibodies to GABHS). This was how she demonstrated that the reaction was due to the antibodies and not the GABHS...The PANDAS mice didn't have GABHS, only the antibodies.

 

Susan Swedo said at one of her DAN conference lectures, that she thinks the difference is that PEX gets quicker results because it actually filters out, removes the offending antibodies, so sx's cease. With IVIG, she thinks the donor IgG recognizes the offending antibodies as foreign and destroys them...so it takes time for that to happen. But, your question makes me wonder about the nature of the IgGs in the IVIG...are they undifferentiated for antigens?

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Yes in IVIG they are undifferentiated, however they are from adult donors who tend not to get GABHs anymore and shouldn't have antibodies or at least a lot of antibodies against strep. But many have seen symptoms increase after IVIG and some have turning back of the pages up to 12 weeks. If it is decreased inflammation as Dr. K says why wouldn't this also be the case for PEX. Once the antibodies are removed the child still has inflammation. In theory, Cunningham is looking at 4 different antibodies and symptom correlation. Could IVIG be putting some of these back in and if the child at the moment has a weak BBB couldn't this be the symptom exaserbation?

 

 

 

te='Oct 10 2009, 12:34 PM' post='40633']

Looking for knowledgeable answers or ideas on this one. If PEX removes antibodies, and we all know inflammation takes months to resolve, why do kids after PEX see immediate improvement with NO turning of pages or limited amounts? Some after IVIG have immediate symptom resolution, others have a turning back of the pages for an hour or two a day, OTHERS have complete set backs worse than expected for weeks after IVIG. If Cunninham is looking at several different antibodies, and I have been told that they think OCD and tics may be caused by different antibodies could't the IGG's we are downloading into the kids bodiies contain some of these antibodies????? Causing a set back???? The mouse model use mice with weak blood brain barriers and gave them IGG's. Are these the same IGG's in IVIG? If anyone can tell me which antibodies were given to the mice I would like to Know? Dr K says you will see many symptoms you haven't seen in a while come back after IVIG. No one says this after PEX. Thanks for your help.

I think with Mady Hornig's mouse model, they gave the BBB weakened mice antibodies from mice who had produced an immune response to GABHS (antibodies to GABHS). This was how she demonstrated that the reaction was due to the antibodies and not the GABHS...The PANDAS mice didn't have GABHS, only the antibodies.

 

Susan Swedo said at one of her DAN conference lectures, that she thinks the difference is that PEX gets quicker results because it actually filters out, removes the offending antibodies, so sx's cease. With IVIG, she thinks the donor IgG recognizes the offending antibodies as foreign and destroys them...so it takes time for that to happen. But, your question makes me wonder about the nature of the IgGs in the IVIG...are they undifferentiated for antigens?

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I think you need to read some of the post-pex postings. There are several families - Alex, mine and others I know - who did not see immediate improvements with no setbacks. Even MomMd posted about a saw-tooth recovery pattern. We are 8 weeks post-pex. Week one had only subtle improvement. Weeks 2-3 were way worse than before pex (not as bad as our worst exacerbation, but much worse than the day we went into the hospital). We then saw symptoms we hadn't seen in months. Finally by week 4-5 we saw symptoms greatly diminish and most even go away entirely. But then week 6 we saw a mild regression. Now things are good again. It's been up and down. Each down has been less severe than the one before it. and each up has been higher than the one before it, so it's an upward trend. But hardly without its nail biting moments. Hardly an instant recovery.

 

I've never really understood what "turning of the pages" means. So I can't speak to that. We've been told to expect 6 months of serious recovery, then another 6 months of more subtle healing. But it's not linear. It's more two steps forward, one step back.

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I think you need to read some of the post-pex postings. There are several families - Alex, mine and others I know - who did not see immediate improvements with no setbacks. Even MomMd posted about a saw-tooth recovery pattern. We are 8 weeks post-pex. Week one had only subtle improvement. Weeks 2-3 were way worse than before pex (not as bad as our worst exacerbation, but much worse than the day we went into the hospital). We then saw symptoms we hadn't seen in months. Finally by week 4-5 we saw symptoms greatly diminish and most even go away entirely. But then week 6 we saw a mild regression. Now things are good again. It's been up and down. Each down has been less severe than the one before it. and each up has been higher than the one before it, so it's an upward trend. But hardly without its nail biting moments. Hardly an instant recovery.

 

I've never really understood what "turning of the pages" means. So I can't speak to that. We've been told to expect 6 months of serious recovery, then another 6 months of more subtle healing. But it's not linear. It's more two steps forward, one step back.

Thank you LLM, I do need to look at those...I was completely going on what I'd heard from Swedo. I have to remember that she was working with some very distinct cases (hand picked for clarity), and there was probably less variability in her results because of that. She did have a case of PEX who needed a "do over" as well.

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(revised)

 

Could IVIG be putting some of these back in and if the child at the moment has a weak BBB couldn't this be the symptom exaserbation?

 

There are a couple explanations that seem to make sense to me on the "turning back pages"

  1. Inflammation? There is a theory that the anti-neuronal antibody causes inflammation of the basal ganglia. Under this theory, PEX reduces the antibody causing the inflammation, IVIG has significant anti-inflammatory effects and might get rid of the antibody, and prednisone has strong immunosuppresent behavior. So the theory here would be that as the inflammation goes down and the symptoms that emerged on the way up re-emerge on the way down.
     
  2. Concentration of antibody? A second explanation is that PEX and IVIG reduce the concentration of anti-neuronal antibodies in the blood and PEX, IVIG and prednisone all three are anti-inflammatory and help close the Blood Brain Barrier (i.e., preventing any remaining antibodies from getting to the neurons). So with fewer antibodies getting to the brain, eventually the antibodies stop binding to the dopamine receptors and the proper signals can get through. This is similar to having a lot of static on a radio and then having that static removed.

So turning back the pages could be either a result of reduced inflammation or a result in the concentration of the anti-neuronal antibodies.

 

What for me is interesting is that prednisone seems to have such an effect -- this seems to imply that inflammation (particularly of the BBB) is part of what is going on.

 

I'll add a separate post about Treg cells as I think I confused folks enough with the above :-)

 

Regards,

 

Buster

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I think you need to read some of the post-pex postings. There are several families - Alex, mine and others I know - who did not see immediate improvements with no setbacks. Even MomMd posted about a saw-tooth recovery pattern. We are 8 weeks post-pex. Week one had only subtle improvement. Weeks 2-3 were way worse than before pex (not as bad as our worst exacerbation, but much worse than the day we went into the hospital). We then saw symptoms we hadn't seen in months. Finally by week 4-5 we saw symptoms greatly diminish and most even go away entirely. But then week 6 we saw a mild regression. Now things are good again. It's been up and down. Each down has been less severe than the one before it. and each up has been higher than the one before it, so it's an upward trend. But hardly without its nail biting moments. Hardly an instant recovery.

 

I've never really understood what "turning of the pages" means. So I can't speak to that. We've been told to expect 6 months of serious recovery, then another 6 months of more subtle healing. But it's not linear. It's more two steps forward, one step back.

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We have heard it more as "turning back the pages" and in our case this accurately expresses what was happening.

 

 

I've never really understood what "turning of the pages" means.

 

We keep a daily journal and plot symptoms from the week. Since IVIG, it has been like flipping backwards through the journal. Symptoms that were there over 6 months ago have suddenly emerged and then passed just as quickly. The only remaining symptoms are:

  • a slight verbal tic
  • some social anxiety
  • some separation anxiety

Even these are now substantially reduced.

 

Regards,

 

Buster

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Thanks for all the info to all. I understand that LLM has had some regression after PEX and I also recognize healing can take awhile. Many have a saw tooth recovery. I however am trying to understand why Dr. K expects a turning back of the pages, and says it is a reduction in inflammation and Dr. L says there is immediate improvment with PEX and does not MOST of the time see a turning back of the pages. I recognize some kids heal faster then others. I am however looking for answers as to why Dr. K actually sees regression and warns parents of this while PEX normally does not. Just more to think about. Could adding more antibodies provoke symptoms before healing happens?? And if so why? Buster, you lost me on this explanation??? Usually I can partially follow your science.

 

 

Swedo had 1 Pex and 1 IVIG that didn't respond to treatment (both had tics, no OCD btw). She also had 2 IVIG and 1 PEX that had to have a repeat treatment after exposure to strep (with increasing strep titers) despite pen prophylaxis.

 

http://www.latitudes.org/forums/index.php?...art=#entry38864

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Just as LLM said, my son never had any instantaneous recovery from his PANDAS symptoms post PEX. We had ups and downs for the first 5 weeks or so but every few days he would have a new 'best day so far'. About three weeks ago he got a tooth abcess/infected tooth and had a major regression. Today he was diagnosed with a sinus infection that we are sure has been festering for at least a week and again saw regression over that week with a major flare up of PANDAS symptoms today. He started Cefdinr tonite and we are hoping to get back on the road to recovery but are certainly very discouraged right now. Hope to post some better news soon. To those considering PEX, the results do take some time. Spoke to Dr. Latimer about this and she said that just like recovery from encephalitis, you need to give it time.

 

If I had my druthers he would be on full strength antibiotics for a long time because we have seen first hand how any infection, not just strep, can have serious consequences once PANDAS is already in place.

 

I also can't believe how bad our luck has been. I want to scream. A tooth infection followed immediately by a sinus infection. Ugh.

 

Alex

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Thanks Buster. IVIG definately lowers ANA my daughters was reduced from 1:2650 to 1:80.

 

Alex, I can't remember did your child have IVIG and then PEX?? Sorry about the tooth infection. Have you run another Cunningham test? My kids Cam Kinase has raised from 144 to 162 over the past 2 months. She had IVIG mid may. Two months post IVIG her Cam was 144 now its raising. She has had no infections or viruses. However her immune markers recently dropped off again and now she has PIDD.

 

Buster, you lost me on this explanation???

 

Sorry about that. I put too many things in the explanation :-(. I revised the post, see if it makes more sense now .

 

I'll post material on Treg separately.

 

Regards,

 

Buster

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Do any of the parents on here test positive for ANA antibodies? I am wondering if it is something we could have passed on to our kids....these antibodies are major indicators in autoimmune disorders........I have a positive ANA titer, although it is not considered to be significant. Anyone else been tested?

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