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Adult PANDAS info?


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There was an adult woman who posted on here last week about the dissapearance of her OCD after tonsillectomy. Here is the link.

http://www.latitudes.org/forums/index.php?showtopic=16392

I'm suprised it didn't get more attention then it did.

 

Here is a link to two articles by a psychiatrist who treats PANDAS, including adult PANDAS, with tonsillecomy/adenoidectomy. Some interesting reader comments to the second link as well.

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

The psychiatrist recently did a couple of video blogs on PANDAS as well. Here is a link to the most recent.

http://beverlyhillsshrink.blogspot.com/search?updated-min=2012-01-01T00:00:00-08:00&updated-max=2013-01-01T00:00:00-08:00&max-results=1

 

I think there is enough evidence to at least explore the tonsillectomy approach for any adult with OCD, especially if there is a history of strep.

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There was an adult woman who posted on here last week about the dissapearance of her OCD after tonsillectomy. Here is the link.

http://www.latitudes.org/forums/index.php?showtopic=16392

I'm suprised it didn't get more attention then it did.

 

Here is a link to two articles by a psychiatrist who treats PANDAS, including adult PANDAS, with tonsillecomy/adenoidectomy. Some interesting reader comments to the second link as well.

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

The psychiatrist recently did a couple of video blogs on PANDAS as well. Here is a link to the most recent.

http://beverlyhillsshrink.blogspot.com/search?updated-min=2012-01-01T00:00:00-08:00&updated-max=2013-01-01T00:00:00-08:00&max-results=1

 

I think there is enough evidence to at least explore the tonsillectomy approach for any adult with OCD, especially if there is a history of strep.

 

T/A certainly seems worth considering. Some kids flare with T/A, so it would be important to give IV abs during and good doses of abs before and after T/A.

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Thanks to all, have found this so helpful and inspiring. Need more than 24 hours in the day to keep up with researching, though! Son has started zith (getting the acronyms, and yes, nocturnal enuresis), although it is a short term prescription. DS already wants to try ivig or PEX but we are meeting with speculation and resistence moving forward from the ID doc, rheumatologist and neurologist coming up though. Not sure if I mentioned earlier that he also had a full seizure last summer. Nothing conclusive, chalked up to an aberrant drug interaction......although it is being looked at anew now. Luck to you and us all :)

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This thread has some info. on older kid/teens that may pertain to adults:

http://www.latitudes...showtopic=16485

 

and

 

Here's a Turkish study with adult men:

http://www.turkpsiki...=article&id=592

 

Thank you :)

 

I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections.

 

If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients?

 

Is removing a reservoir of strep bacteria the more important factor?

 

Thanks in advance, for explaining.

 

Carol

fsds@rkymtnhi.com

 

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I had a T & A as an adult, 21 yo. Dr. T thought that was telling although as far as I know I never had strep. In 2010, Dr B ran titers on the whole family and we all had elevated titers and none of us had typical strep sick symptoms.

 

We've all had them out; our whole family, our brothers, sisters and our parents. Most of the girls' younger cousins have gotten them out or soon will. We have some immune deficiencies, but over produce many antibodies as well.

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I had a T & A as an adult, 21 yo. Dr. T thought that was telling although as far as I know I never had strep. In 2010, Dr B ran titers on the whole family and we all had elevated titers and none of us had typical strep sick symptoms.

 

We've all had them out; our whole family, our brothers, sisters and our parents. Most of the girls' younger cousins have gotten them out or soon will. We have some immune deficiencies, but over produce many antibodies as well.

 

Were your titer raised before and after the surgery? What changes did you and family members experience post-surgery?

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This thread has some info. on older kid/teens that may pertain to adults:

http://www.latitudes...showtopic=16485

 

and

 

Here's a Turkish study with adult men:

http://www.turkpsiki...=article&id=592

 

Thank you :)

 

I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections.

 

If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients?

 

Is removing a reservoir of strep bacteria the more important factor?

 

Thanks in advance, for explaining.

 

Carol

fsds@rkymtnhi.com

 

 

It seems that in many situations removing the "nidus" of infections (if strep is lurking in the tonsils) is helpful. It definitely helps some kids, and perhaps helps some kids get less strep. But, there are also kids that have T/A that continue to get strep and have PANDAS problems.

 

Dr. Tanya Murphy (at the IOCDF conf in San Diego) is somewhat cautious about T/A. She also (like you) points out that tonsils have an immune function, and that she has seen kids whose PANDAS becomes full-blown with a T/A. I don't know if those kids were on abs before/during/after their sx however.

 

I have heard that Dr. Latimer (usually?) recommends T/A for PANDAS kids.

 

It's something we haven't done. But our PANDAS dd has always had small tonsils and doesn't get pharyngitis with strep. I don't think anyone in our area would agree to do it frankly. But, it's hard to know. Bc I have heard of kids who have had T/A with small tonsils, but when they're out, the docs say the tonsils are shrivelled and infected.

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This thread has some info. on older kid/teens that may pertain to adults:

http://www.latitudes...showtopic=16485

 

and

 

Here's a Turkish study with adult men:

http://www.turkpsiki...=article&id=592

 

Thank you :)

 

I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections.

 

If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients?

 

Is removing a reservoir of strep bacteria the more important factor?

 

Thanks in advance, for explaining.

 

Carol

fsds@rkymtnhi.com

 

 

It seems that in many situations removing the "nidus" of infections (if strep is lurking in the tonsils) is helpful. It definitely helps some kids, and perhaps helps some kids get less strep. But, there are also kids that have T/A that continue to get strep and have PANDAS problems.

 

Dr. Tanya Murphy (at the IOCDF conf in San Diego) is somewhat cautious about T/A. She also (like you) points out that tonsils have an immune function, and that she has seen kids whose PANDAS becomes full-blown with a T/A. I don't know if those kids were on abs before/during/after their sx however.

 

I have heard that Dr. Latimer (usually?) recommends T/A for PANDAS kids.

 

It's something we haven't done. But our PANDAS dd has always had small tonsils and doesn't get pharyngitis with strep. I don't think anyone in our area would agree to do it frankly. But, it's hard to know. Bc I have heard of kids who have had T/A with small tonsils, but when they're out, the docs say the tonsils are shrivelled and infected.

 

-------------------

 

Thanks for this, EAMom!

 

Above, I also saw this reply:

 

For those wanting the tonsils out to clear out of infection, but also still wanting tonsils to do their job later on, remember, there is kryo therapy available, so far as I know just available in Germany, where tonsils are frozen off but then regrow.

 

---------------------------

 

Wow! Maybe this could be a win-win choice? Does anyone do this in the U.S.?

 

And, in a "doctors" thread (docs who help PANDAS patients), "Hootie" talked about homeopathic remedies, and I am waiting for his reply as to which ones he used, etc.

 

Carol

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