peglem

Low dose IVIG is making things worse. We had my daughter in a relatively good place January through most of March. Agression, rages, SIBs were nearly absent...all her SIB wounds were healing, she was starting to work on her lessons at school....everything moving along nicely. March 24th we started low dose IVIG, standard dosage for immune deficiency, to be repeated every 3 weeks. Things got just a little worse, but improved again after 2 weeks. She had her 2nd infusion a week ago and has been going downhill ever since. I know you guys told me, and I should have listened...but she has an immune deficiency and so I thought correcting that may be the right thing to do. So yesterday I went surfing, and found LD IVIG increases inflammation...and that's what I'm seeing- huge pupils, photophobia. High dose IVIG decreases inflammation because of the higher amount of sialic acid. So, have a call in to her pediatrician to see if he'll rx some prednisone. Her immunologist has nothing available until June frickin 1st! But, I've got an appointment for monday with his brother who is an immunologist also, same practice. This is scary- it was a long haul getting her to where she was b4 IVIG.

Eosinophils are alsoassociated w/ parasites.

tarabeara, How is your son doing? I've been dealing w/ my daughter's infection triggered autoimmunity and have been worried about your little guy!

So, do they have any real evidence that it is allergy related, or did they decide that because they can't find another explanation? I would think that if PANDAS can cause speech motor interference, it could certainly affect the muscle coordination involved in swallowing. Kind of like chorea of the swallowing function.

What is the IfF?

Yes, they are, just like he is! Except they're doing something to help! I'll bet he expects to get paid for that office visit, even though he did nothing to help! Sounds like this doctor has been spending too much time at the NIMH PANDAS website!

We saw improvement the second day on a five day burst.

I really like this article, what I got was the following: Auto-antibodies mark a cell for consumption by macrophages When a Macrophage consumes the cell, it keeps the tag of the auto-antibody The tagged macrophage runs into an appropriate T-cell and activates the T-cell The activated T-cell runs into a B-cell and causes production of more auto-antibodies And the cycle repeats (got to step 1) What's interesting with GABHS (and some other diseases) is that the exotoxins to strep can activate non-specific T-cells (i.e., that the T-cells get activated whether the specific antigen is present or not). Normally, this isn't a problem because the antibodies don't find anything to bind to and die off. However, if they are anti-host and find a binding site, then this can cause the feedback problem where the immune system goes nuts again. The paper then indicates that IVIG works by either: Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die (a) makes the most sense to me -- but who knows. Buster Thanks, Buster. You made my fuzzy sort-of-understanding much clearer!

After about 3 months of almost no agressive, self injurious rages- this weekend brought a flare. Its scarier, once you think you're on the path to healing and have found the key, to then realize there is more to be done but you don't know what.

http://bloodjournal.hematologylibrary.org/...full/115/9/1663 I almost understand this one!

I think you are in good hands w/ Dr.K.

Its also possible that he had post infectious encephalitis, instead of an autoimmune disorder.

We did C-test before getting terribly aggressive. We only had prophylactic dose of zith prior to C-test, just because we really didn't know what to do about it before then. Pediatrician tried to get specialists to help, and even tried to get IVIG before that, but the C-test gave him some real information that we just didn't have before, that demonstrated there was more going on than a "carrier" w/ low ASO titers who was just autistic.

But, how can you be sure the URI is not viral? We've doubled up on abx in the past, too, but that was to try to eradicate intracellular strep.

Okay, I was under the impression that PANDAS/PITANDS was the immune system making an antibody(s) in error...ones that it should not even be making, or should be destroying if it is made.....but if it is antibodies that are appropriately made to an antigen on the strep cell (or whatever pathogen) then how the heck can "resetting the immune system" w/ high dose IVIG address that? Once your body resumes producing its own Bcells again, wouldn't they respond in the same way to the infectious agent? There really is no way to insure kids are not exposed to the causative pathogen (although chances of that are better w/ Lyme), most of which are so pervasive in the environment, there's just no avoiding them.

I wonder about the same thing. My child used to be sick almost all the time when she was younger. After about age 9, she stopped getting typical symptoms- no more fevers, runny nose once in awhile, But that's when her PANDAS symptoms seemed to amp and stay amped. She was more episodic before then. Very low ASO, AntiDnase very low. She is immune deficient, not just in IgG, but also IgA and IgE. And I've always wondered if that should be treated the same as the kids who get high titers. But also, I wonder why, if my child is so bad at mounting an immune response, why is she so good at making auto-antibodies? Makes my head hurt trying to figure it out! Edited to add: I wonder if this is why our kids seem to respond differently to treatment as well.

For my daughter I start her out at 30mg- 10mg every half hour, so it eases her in, then we give another 10mg every 2 hours. This is what her psychiatrist approved for getting her on the airplane (to see Dr.L) and this is what her pediatrician has authorized for IVIG. We still have a bit of a struggle, but we can manage on that. My daughter has been completely sedated (w/ anethesiologist) for dental procedures & MRIs.

I wonder why the children were institutionalized?

Well, no way you can hold her down for the duration of the procedure! At the dentists office, when my daughter goes in for cleanings, they have this big ol' papoose board with very strong velcro that they use to help her hold still. I hate it, but she needs the dental care and she can't hold still, even if she tries, and putting sharp objects in her mouth while she jerks around is a bad idea. How much valium did you try? My 100lb daughter does well on 30mg, which is a lot, but lower doses don't work for the really scary stuff. Can't the doctor who is ordering the IVIG order sedation for the procedure? Does she just need sedation to get hooked up, or throughout the whole procedure?

Vickie, Thanks for your help. I did try one dose of Ibuprofen and it did not help... do you have to give a couple doses for a response? I really don't think he has strep but is just reacting to it. We took Azith in the past for a couple of months and it did not control his symptoms. I am just confused that if his antibodies are up, is it time more than the increased Augmentin dose that will make the difference? Thanks for your response. Its the antibodies that cause the symptoms and abx does not kill antibodies. So, yes, it takes time for the antibodies to decrease even after the bacteria are gone.

We flew out from AZ to see her in January. We are not cured.

You can split them, as long as you take both halves at the same time (one right after the other). Splitting them to cut the dosage in half is what you should not do.

My carrier had tons of positive swabs, but low titers, and no symptoms of infection.

But then, how many PANDAS kids have been dx'd w/ bipolar, autism, ODD...other psych diagnosis? I think this is much bigger than anyone realizes, and I think before children are given psychiatric diagnosis they should be screened for infectious agents and treated accordingly.

What does the doctor want you to do? If your child does well on the zith, why not just continue on the zith? How did he do on the augmentin? I'm guessing not too well if you switched to zith.