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Dr. T's latest


oivay

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Seriously, eamom, what does buster say, all girls. How do u get past that statistic???? I am so old and forget my statistics, but what are the statistical chances of no boys. Or one. I believe there are 23 girls now with this and one boy? Need math expert. I hope further investigation continues, hate to think our community will let this stand as either pandas or conversion disorder, these girls deserve more investigation, and support.

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Update: I thought I posted this on this thread already, but apparently it was in a dream.

 

Dr. Cunningham is in early stages of preparations for her CLIA approved lab, hoping to be open this summer. They will provide antibody testing for autoantibodies associated with:

 

• Tics

• OCD

• PANDAS

• CANS

• PANS, which encompasses all these conditions

• Sydenham chorea

• and other related brain disorders

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I'm a new member & my daughter is the first of the Corinth NY cases & a new patient of Dr T as of this week , very exited , been suffering since may 2011. I have heard the "why girls only/predominately" question frequently.I have copy & pasted from other forums & e-mails tHat I found interesting.

 

 

A: "If it is an estrogenic chemical, like pesticide, girls could suffer more because they would be filling that detox path up with detoxing their own estrogen and less room for the estro chemical to get thru that detox path. "

 

 

 

B: "Okay...remember when Swedo (in the Batavian article) was talking about how OCD is more common in boys, but after puberty "it" switches and is more common in girls? (And first we thought "it" meant PANDAS, but then decided she meant "it" meant OCD. And she also stated that PANDAS is more common in boys?

 

What if that is because PANDAS (not just OCD overall) truly becomes more common in females (vs. males) post-puberty ? This is a group that would have been previously ignored, PANDAS would have been prematurely dismissed (or not even considered) in this group, b/c they are "too old".

What if all these post-puberty PANDAS girls are being missed...diagnosed with OCD, anorexia, anxiety, conversion disorder (you get my drift)...

 

Or maybe PANDAS isn't really at all more common in boys (pre-puberty) in the first place. Maybe the girls are just getting missed b/c they don't have the tics or the titers?

 

I mean, SC is more common in girls, what is so different about PANDAS that it affects mostly boys? For the most part, the auto-immune diseases we see in adults are more common in women. Type 1 diabetes is more common in men, but doesn't type 1 diabetes start in childhood? So, maybe if the disease is going to start in childhood, it may be more common in males. If it's going to start after puberty, it's going to be more common in females?

 

 

http://autoimmune.pa...mi.edu/faqs.cfm

Q: Why are autoimmune diseases more common in women than men?

A: The answer to this question is not yet fully available. It is likely that hormones play an important role, but a number of other factors have been implicated. It should be noted that while most autoimmune diseases are more prevalent in women, a few such as Type 1 diabetes, ankylosing spondylitis and autoimmune myocarditis are actually more common in men. It seems likely, therefore, that there will be multiple reasons for the sex related bias in autoimmune disease.

 

http://www.aarda.org...utoimmunity.php

In all of these diseases, the underlying problem is similar - the body's immune system becomes misdirected and attacks the very organs it was designed to protect. The fact that women have enhanced immune systems compared to men increases women's resistance to many types of infection, but also makes them more susceptible to autoimmune diseases.

 

Taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women.

 

 

People on this site are very dedicated , intelligent & fully capable of making a DENT in solving the problems our children are suffering

Corinth dad

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Wow, that's interesting on the pseudo seizures and stuttering. My PANDAS/lyme DS8 had an incident that looked like a seizure just before an active strep infection. This was just before we discovered PANDAS, and this incident clarified the connection to strep and helped us to discover PANDAS. He went on to have 2 normal EEGs (done while in exacerbation), and it never happened again, despite several severe exacerbations.

 

Also, DS5 who has lyme, and some PANDAS-like features (mainly mild OCD and episodic anxiety), had a short episode of what I would call acute stuttering. He was 3 at the time, and started stuttering so badly he could hardly speak. It would take him several minutes to get out a simple sentence, and it was torturous to listen to. Then a few weeks later it just stopped. I completely forgot about that until I read this thread. Oh how I wish I could go back in time and see if it correlated with one of DS8's PANDAS's exacerbations.

 

Corinthdad - DENT - bahaha. :lol: Glad you have a sense of humour in the midst of this! Welcome!!

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Corinthdad, thanks for sharing your thoughts.

I like your theory alot.

 

It is nice to have some fresh eyes on this and see it from a different perspective.

At the same time i'm sorry your child is in need.

 

This is a great site with alot of great parents.

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welcome Corinthdad!

 

you might be also interested in this (I added the bold) from http://cmr.asm.org/content/13/3/470.full#xref-ref-509-1

 

Sydenham's chorea is a neurological disorder causing involuntary movements, muscle weakness, and emotional disturbances. After puberty, chorea is seen only in females (507).

 

which is particularly relevant since Swedo has hypothesized that PANDAS may be a "forme fruste" of Sydehnham's Chorea. http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf (yeah, I didn't really know what that meant: forme fruste (froost) pl. formes frustes an atypical, especially a mild or incomplete, form, as of a disease )

 

 

The children with SC reported that the obsessive-compulsive symptoms

began 2 – 4 weeks prior to onset of the adventitious movements, leading

the investigators to hypothesize that the neuropsychiatric symptoms

might represent a forme fruste of SC and be manifest by children with

a history of (untreated) GAS infections, even in the absence of chorea

[6,7]. Dozens of post-GAS cases were subsequently identified and their

unique clinical characteristics served as the basis for the diagnostic

criteria for the PANDAS subgroup [1]

 

 

SO this is all so intertwined...if PANDAS may be an attenuated or altered/atypical version of Sydenham's Chorea...and SC is more common in females (in fact Chorea happen ONLY in females post puberty)...so what happens with PANDAS in terms of sex ratios, if the onset is post-puberty? hmmm.

 

Does anyone know if the boy affected in Le Roy had hit puberty yet? was he younger (junior high) or older? it would be interesting if he were one of the younger ones.

 

PS

here's a case report on PANDAS and stuttering https://www.aacp.com/pdf%2F1110%2F1110ACP_Letters_Agarwal.pdf

Edited by EAMom
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The girls do not have chorea, so why r we comparing this to SC. Little to none says dr T. Also statistically impossible to have this many girls without boys. I think further investigation is needed, and completely irresponsible for all of us to start supporting this as pandas. More plausible to compare encephalitis lethargica than SC.

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The girls do not have chorea, so why r we comparing this to SC. Little to none says dr T. Also statistically impossible to have this many girls without boys. I think further investigation is needed, and completely irresponsible for all of us to start supporting this as pandas. More plausible to compare encephalitis lethargica than SC.

 

I bring up SC b/c it is a close cousin of PANDAS, and b/c Swedo hypothesises that PANDAS may be a forme fruste of SC. This Le Roy illness is PANDAS-like...but also SC-like in the respect that it affects girls post-puberty.

 

I do agree that any further investigation, esp the Cunningham test would be great.

 

I also wonder if any of the affected teens have younger siblings (male or female) that had any behaviour changes during this time (tics, OCD, anxiety, mood changes, tantrums, ADHD, sensory stuff, urinary frequency)?

 

I don't know much about encephalitis lethargica ... is that more common in females vs. males?

Edited by EAMom
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As far as I know, there is zero cognitive decline in these girls. None. I would bet that the Cunningham test would be normal. Just my guess. But my theory is that out of control autoantibodies cause cognitive decline of some sort. Just like most autoimmune diseases with neuropsychiatric symptoms( ie. NMDA encephalitis).

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As far as I know, there is zero cognitive decline in these girls. None. I would bet that the Cunningham test would be normal. Just my guess. But my theory is that out of control autoantibodies cause cognitive decline of some sort. Just like most autoimmune diseases with neuropsychiatric symptoms( ie. NMDA encephalitis).

 

 

1) First of all, welcome CorinthDad

 

2) PhillyPA, I agree that everything needs to be looked into more carefully. I do suspect, though, that we do not have all the information about these girls, because it would be inappropriate and, I think, unethical of Dr. T. or any doctor to share all details. So, is there cognitive decline...we don't know. I do suspect, though, that Dr. T. is looking carefully at all symptoms, and I do trust him to do a thorough workup on these girls (if for no other reason than the world is watching ;) I do believe that this could be SC, and Dr. Swedo said (at the post-infectious conference in October) that if it looks like SC, treat it like SC.) Regardless, though, there's no question that something is going on with these girls (and at least 1 boy), we all know it's doubtfully "conversion disorder" (after all...how many of our kids were diagnosed with that absurd diagnosis, before we resesarched more, banded together, shared information, found our kids symptoms improving with biomedical treatment....ok...you can all put your hands down now.)

 

Here's another theory...and just mine of course, but maybe the boys have more of the neuropsych issues (OCD, anxiety, depression, etc., and they and their parents haven't recognized it as such.) Maybe they already had some symptoms, like ADHD, Asperger's, etc, and when they got sick last fall, fell through the cracks, because no one recognized them as having these symptoms. Personally, we would never have known that DS(now 19) was sick with PANDAS...if his brother hadn't had more classic symptoms, I met Diana Pohlman online who passed on a paper to me by Dr. K that mentioned the kind of symptoms he was having, I got my dr. to give him a single course of abx (the symptoms went away overnight,) and then this played out 3 more times! It was only after diagnosis, and pure luck that we stumbled upon it that we found evidence dating back to at least 1st grade (major handwriting changes) that verified this had been going on for years (and then we thought back on all the times he was having problems, but we didn't know it was anything more than ADHD/Asperger's/bad behavior. So, again, are there actually more boys involved, too, but they aren't being recognized?

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Dont' get me wrong. I think the girls have something. By all means treat with an antibiotic. Treat with steroids. Do what works. I just don't think its PANDAS. Could be a mutation of some strain of something. I have no idea. Just doesn't present as pandas. Keep moving forward and find out what works for the girls' healing.

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I don't even believe that my son has pandas. After being 100% sure that it was pandas, I have come to the conclusion that I know nothing. I believe it was LLM that said something like we think we are 100% sure about something and then it turns out we are not. That is where I have been for a while. I believe that if my son had pandas he would be better by now. I think my son falls into the category of "something else".

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