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IOCDF Meet and Greet Tomorrow


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Reminder:

 

International OCD Foundation Conference

 

July 29th-31st in San Diego, CA

 

 

 

Meet and greet other parents connected with PandasNetwork.org

 

Saturday 9:30 am outside the lobby of Dr. Latimer's talk scheduled for 10:00 am.

 

 

 

An exhibit table regarding P.A.N.D.A.S. - P.I.T.A.N.D. Awareness will be found at the East Tower, Lower Level, Nautilus Foyer.

 

 

 

It was sponsored by PANDAS-PITAND Awareness and Research Support in an effort to raise funds for research.

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I'm East Coast time too and anxiously wiating for details. The conference is going on today too so we may have to wait a little longer. I, myself, was not able to go.

 

Hi Vickie:

 

I'll post a few things 'cause it's late here. These tidbits are from Tanya Murphy's (which was the clinician talk (same time as Latimer's :blink: but dh told me to go to it). Maybe others went to Dr. Latimer's?

These are some things Dr. Murphy had to say (lots of what she talked about was *very* basic stuff):

 

-Singular (leukotriene inhibitor) makes ocd worse

-strep titers don't change much over the course of 1-5 mo. (so don't check them so frequently)

-those with mild immune def. are perhaps at greatest risk of PANDAS

-"my child is addicted to augmentin" could be due to 1) decreased infections 2) immune modulating role of antibiotics 3) there are trial of clavulate for depression/anxiety 4)glutamate transporter (down arrow)

 

one thing that concerned me is that Dr. Murphy didn't make it really clear that strep titers can be low in PANDAS (sigh)

 

also, she is anti-tonsilectomy. She says she sees symptoms start after tonsilectomy. BUT....if you look at (was that your recent fb post re tonsilectomies Vickie?) , it wasn't clear if she was talking about already known PANDAS kids on antibiotics getting worse after T and A or kids with smoldering undiagnosed PANDAS/strep that become full-blown once things are stirred up with a T and A (kind of like a tooth extraction). ??? She does feel tonsils are important for the immune system.

 

Swedo's talk was great, but I didn't take notes (lazy). I saw another pandas parent take some pics of her slides so maybe that will get posted somewhere or others will chime in.

 

I might post more later...

 

Eamom

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-those with mild immune def. are perhaps at greatest risk of PANDAS

 

 

 

Any chicken/egg comments about this? Are they mild immune def. after PANDAS has been diagnosed, so can't determine which happened first? Any data on non-PANDAS siblings as base line that then turn PANDAS and then have a drop in immune system measurements? Guess that would be a longshot in terms of data, huh?

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no, i think the assumption was that the immune system problems lead to PANDAS.

 

IMO, it's also likely an "iffy" immune system leads to multiple strep infections (or strep infections that are otherwise assymptomatic, no sore throat, so the kids remain untreated)...and it is these multiple strep infections (esp. untreated) that lead to PANDAS.

 

 

-those with mild immune def. are perhaps at greatest risk of PANDAS

 

 

 

Any chicken/egg comments about this? Are they mild immune def. after PANDAS has been diagnosed, so can't determine which happened first? Any data on non-PANDAS siblings as base line that then turn PANDAS and then have a drop in immune system measurements? Guess that would be a longshot in terms of data, huh?

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My dd11 is the one who has had multiple ivigs, whose PANDAS symptoms were devastating/life altering, ect; my dd8 has presented with milder symptoms managed with abx, not at a level where we would consider ivig for her.

 

When measured in 3/2010, dd8's total IgG was twice that of her more severely symptomatic sister. Something like 1560 vs 720. Neither was caught early and even if I compare the two girls at the same age prior to dx, my older one has always been significantly more severe; both asymptomatic, no positive cultures, just high titers.

 

I wonder too, if that is another "downside" of T & A; not less likely to GET strep, but less likely to be symptomatic in the regular way (not behaviorally)?????

 

 

no, i think the assumption was that the immune system problems lead to PANDAS.

 

IMO, it's also likely an "iffy" immune system leads to multiple strep infections (or strep infections that are otherwise assymptomatic, no sore throat, so the kids remain untreated)...and it is these multiple strep infections (esp. untreated) that lead to PANDAS.

 

 

-those with mild immune def. are perhaps at greatest risk of PANDAS

 

 

 

Any chicken/egg comments about this? Are they mild immune def. after PANDAS has been diagnosed, so can't determine which happened first? Any data on non-PANDAS siblings as base line that then turn PANDAS and then have a drop in immune system measurements? Guess that would be a longshot in terms of data, huh?

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Well, that wouldn't matter if the child is already known to be asymptomatic to strep infections. But, yes, if the child gets white spots and pus on their tonsils when they have strep, that may be a good reason to keep them. they act as an indicator.

 

I think there are some children that benefit from having t and a , it's just also hard to pin point having tonsils removed as the reason for having less strep.

 

I know I,as a child, had NUMEROUS bouts of tonisilitis (may have been strep but never tested, just given penicillin) and never had tonsils removed because that was the time when tonsils were kept because they deemed it an intergral part of the immune system. Now, as an adult, I wish they were taken out.

 

I think if/when a PANDAS child goes for t and a, one really should weigh the time of year, what kind of stress the child may be under after surgery in terms of school and similar and how their PANDAS symptoms are. With my child's PANDAS symptoms in mind, I could not see putting him through even a consult whne at his worst or early on/mid way into recovery.

 

 

I wonder too, if that is another "downside" of T & A; not less likely to GET strep, but less likely to be symptomatic in the regular way (not behaviorally)?????

 

 

Edited by Vickie
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I also think another possible reason for "my child is addicted to augmentin" is that these kids have poor immune systems against strep (or strep "hiding out" like lyme, intracellular or ?) and the strep isn't totally clearing after 10 days...thus long term dosing is needed to keep symptoms down (as strep slowly is released into the child's system from wherever it is hiding).

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The whole concept of tonsils and the immune system is so complex.

 

My son was addicted to augmentin for 7 years and then he reached a point where NOTHING helped his PANDAS symptoms and he went into total exorcist syndrome. When the pediatrician suggested putting my nearly 7 year old son on prozac I knew I needed to do something desperate. We saw a non traditional allergy doc who thought this may be due to yeast (yes - that was probably some of it)... so we stopped all antibiotics and in a few days his tonsils (which were always enlarged and vascular and gross looking) were white. We put him back on augmentin and then had the tonsils removed a couple weeks later - and after that he came off antibiotics all together (in retrospect, I don't know if I would take him off abx again).

 

So - in his case, I think the tonsils WERE harboring bacteria (don't know if it was strep - we did not test when they were white), and I think the addiction to augmentin just kept the bacteria at a low enough level that he had a low level of autantibodies acting on his brain and he was able to function.

 

HOWEVER - it is interesting because his IgG and IgA levels were fine from birth through age 7. Not a problem - and we did measure regularly to try to figure out why he was sick all the time. About 3 years after his tonsils came out, though, a doctor decided to check immune levels again and he had dropped below protective levels in several of the pneumococcal titers. The doctor did not tell me this at the time - figuring his overall IgG was OK. (obviously, before I became an educated PANDAS MOM with binders and copies of all tests). That was in 2007. By 2010 he was very sick with a sinus cyst and chronic sinusitis, and was below protective levels in 10/14 IgG pneumococcal titers. By August, 2010 his IgA was below protective levels.

 

Was he always immune deficient and that was why he had the bacteria in his tonsils? Did allergies and postnasal drip cause crypts in his tonsils allowing bacteria to fester? Did his titers drop because he was fighting infection for so long? Did they drop because he no longer had his tonsils? Did they drop because he was genetically pre determined to have immune deficiency and he just reached a point where it was showing up?

 

I don't have answers to this, but I am so grateful that SOMEONE is interested in looking at it.

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Do they (immunologists) have standard IgG levels for infants and toddlers?

 

I wonder, too,if there are malfunctioning parts of the immune system that are not detectable with lab tests. Can they test how well the Tcells(?) that are supposed to clear autoantibodies are functioning? It just seems like there are so many components to the immune system that its too much to sort out.

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