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New Story Regarding Leroy 12


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Sounds like Dr. T., doesn't it?

 

Get a load of the statement from this Dr. Mechtler at the end of the article. Rule out strep? How 'bout other triggers?

 

Parent Speaks Out

 

 

I just tried to write a response about the fact that strep can be anywhere in the body...not just the throat (and that's taught in medical school), plus the fact that it's not just in pre-pubescent children. But, it appears that I can only comment on facebook, and I don't have (and don't want) a facebook account.

 

So, if anyone want to respond, feel free to use my comments above.

 

Mechtler is a complete idiot!

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It is Dr. T. And thank God for that.

 

Dr. Mechtler is a complete idiot. And his sidekick, that woman, doesn't even look like she herself believes what she's saying.

 

12....literally twelve girls with conversion hysteria? and conversion hysteria has often occurred in young women throughout history?

 

Yikes..........

 

If you check their website, it appears that Mechtler's specialty is cancer. And McVige only recently took her boards (9/2011).

http://www.dentinstitute.com/directory/people/show/jennifer-mcvige

Gupta is also listed on their staff.

 

If any of their (Rochester Dent neurologists) kids were experiencing this, I sincerely doubt they'd be swallowing the conversion disorder koolaid.

Edited by oivay
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Wow wow wow. This doc is an idiot! In the blurb on the bottom of the article it says he ruled out PANDAS b/c only 1 girl had a throat infection (I assume he cultured all the girls he saw?) and "furthermore PANDAS only occurs in prepubescent children." Yikes, so this big deal neurologist doesn't know that:

 

1) strep can occur in non throat locations

2) non-strep bacteria and viruses can trigger exacerbations

3) if many of these girls already had pre-existing tics ( and who knows what else) this wasn't their sentinel PANDAS episode, and onset may was likely prepubescent

4) if onset wasn't prebubescent both Dr. T. and Dr. K. have described a teen (adolescent) variant (in papers or online).

 

But what really makes me crazy is that there is no mention of Sydenham's Chorea! With SC tic/movement symptoms can show up several months AFTER a strep infection, so you woudn't necessarily expect to see elevated titers or a positive culture once movement symptoms have started.

 

Dr. T, please come to the rescue SOON! ! I can't stand this "Mass Hysteria" nonsense any longer.

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Have been trying to hammer this exact point for some time now - enough with this PANDAS and Strep tune.

For some time I have said it is harmful not to use the name PANS and have PITANDS and PANDAS follow it, as they are the ones people are familiar with.

Have said again and again that when doctors do not care to read and learn and educate themselves, we end up with patients denied proper diagnosis and treatment and getting wrong treatment which may well be harmful. We do not even know if leaving a patient untreated for too long may be harmful for life!

Have been having it hard with Beth Melony lately over her insistence on telling the entire world about PANDAS and Strep and her son's great recovery - and asked her to use her campaign and acquired popularity to preach PANS (PITANDS of which PANDAS seems to be just a sub-group and all triggers we know of including bacteria and viruses) but she would not.

 

Read this one more time

"Dr. Mechtler told 2 On Your Side's Melissa Holmes by phone that he ruled out Pandas because it's associated with Strep and only one girl had a throat infection. Furthermore, he says, Pandas only occurs in pre-pubescent girls."

and help me drive in the right message - it is time we all used the best name available - PANS (PITANDS / PANDAS) and have Strep listed as one of the various assumed triggers and make it clear one need not have an actual infection, esp. not in one's throat!

 

If we want to ensure patients receive serious treatment by doctors who care about treating and not about talking and having an ego trip, we should speak correctly.

 

I have heard this very same sentence about my Sandra from similarly prominent doctor (in Finland) some 5 years ago, (and throughout the past 7 years).

This made her try Psychiatric Drugs which made her worse, this delayed her antibiotics treatment by more than 2 years. This denied her additional IVIG treatment. this most probably has crippled her for life!

I hope I can still save her and bring her back to normal functionality level.

Now, so many years later, not in backward Finland but in the promised land for PANS, the USA some doctor (and not one, a good few of them) go on TV and speak irresponsibly, just because they have a medical degree. When writing and talking we need to remember what really goes on in the medical realm - not only research and treatment and care but also competition, internal politics and ego trips.

What we need to understand is that we can change this. These doctors read what parents write, not only what other doctors write, they also listen to what some parents speak - and they repeat.

Whenever we speak and tell our own story, we must remember that it is not the only one and that the more we learn about the condition the more complex it seems to be.

No one of us has the right to harm the chance for any patient to receive proper treatment!

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Bat-Sheva I so agree with you on the terminology -- The reference to strep in the term dissuades doctors from making the diagnosis--

(we have all been there!)

 

 

Like so many of our kids on this forum, who "flair" with tourettes-like tics and/or OCD, when exposed to strep, or illnesses, etc., our daughters did not "test" positive for strep...and initially, like many others, we mistakenly thought that meant that the "PANDAS" issue was not it--how WRONG we were!

 

Thankfully we found a caring doctor willing to TRY a PANS treatment -- (steroids at the time, and antibiotics) and the tics and OCD subsided.

 

These dear parents--

 

I wonder if anyone has asked the t.v. doctors just how long THEY think these tourettes-like symptoms would continue IF it was not a true ticcing disorder!?!

 

I mean, just how long do they think a high school girl would wish to continue these behaviors--15 minutes, an hour? 3 months or LONGER???!

 

GIVE ME A BREAK.

Conversion is another term for: "I have no idea what this is--must be them!!"

Edited by T.Mom
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I would like to know if that one girl with a throat infection had classic strep symptoms.

 

 

 

Me too. And I also wonder ...

 

if they didn't even didn't culture the other girls "because their throats didn't look sore.". Who knows? And did they treat that 1 girl with antibiotics and then recheck her a few weeks later to make sure she really cleared?

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Just something that popped into my head: What in the heck does a neurologist have any business making a psychological dx? That is a pretty big leap in fields. Kurlan & Singer have indoctrinated this dude as far, as I am concerned. Dawn

 

My dh thought the same thing. However, I believe there are also psychiatrists (or psychologists) at Dent, so maybe they are covered from that respect.

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I watched this and at 1:37 secs the volume goes out!!! what does the dad say after the second opinion comment? I am so curious.

can anyone hear it?

 

 

Same thing happened to me?? I could not hear it either.I tried to reply- can only use facebook. Don't have it, don't want it. The article stated they are suffering from ticks NOT tics. C'mon people- if you can't even proofread and edit responsibly enough to get THAT right- how can you expect educated people to take the rest of what you have to say seriously?

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Just something that popped into my head: What in the heck does a neurologist have any business making a psychological dx? That is a pretty big leap in fields. Kurlan & Singer have indoctrinated this dude as far, as I am concerned. Dawn

 

 

A local neurologist here did the same with my DS last year when he suddenly developed Parkinson's-like tremors and his balance was so bad that he couldn't walk heel-toe even in the doc's office. This doc actually suggested PANDAS as a dx (I didn't tell him the dx at first, but did tell him the whole hx, including treatments to date.) He also knew that we had seen a prominent psychiatrist at the same hospital. After he brought it up, I told him that she said it was not psychiatric. A week later, he told me it was "conversion disorder." Personally, I think they could get into a lot of medical malpractice suits with trying to make diagnoses like that.

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