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Dr T on Dr Drew tonight


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Mono...as in Epstein Barr Virus. The virus my beautiful

DD 12 surcumbed to last spring that caused such a devastating surge of pans symptoms. Extreme contamination fears, hiccup tic, OCD, anxiety, irrational weather fears, rages and lets not forget the anorexia nervosa (both presentations). She almost died after refusing to eat for. >20 days. EBV is ugly! The worst possible scenario with a subseptible PANS child. It moves in and stays put. No wonder these girls have issues.

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I am thankful that Dr.Drew is covering this and said he would continue to cover this story.I am disappointed that they didn't give Dr.T. time to discuss treatment if it is PANDAS/PANS. Dr. Drew also made a comment about antibiotics,steroids,IVIG as a treatment but said it doesn't work very well. I disagree about this and wonder how he would even know! I am not sure how many more broadcasts I can watch about this being stress related.

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My god! My jaw dropped too. Did they say she had a pre-existing seizure disorder or did that all start because of CONVERSION DISORDER?

 

I know!!!! My jaw literally dropped when she said that.

 

 

fyi...Dr T will be on Dr Drew on HLN at 9 pm eastern time.

 

Oh my gosh - Thera had tics after mono in the past... HELLO!! Can you say PITAND??

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My god! My jaw dropped too. Did they say she had a pre-existing seizure disorder or did that all start because of CONVERSION DISORDER?

 

I know!!!! My jaw literally dropped when she said that.

 

 

fyi...Dr T will be on Dr Drew on HLN at 9 pm eastern time.

 

Oh my gosh - Thera had tics after mono in the past... HELLO!! Can you say PITAND??

 

That was my theory when I heard early on that many of the girls had preexisting "medical problems", I thought Ughh, the girls are misdiagnosed PANDAS/pitands/pans (which may have started before puberty) and now this most recent trigger (whatever infection this is, strep, mycoplasma, mono) has sent them into a major exacerbation.

 

That lady doc from Dent talked about how they did extensive testing MRI's, EEGs, etc. and didn't find anything. And I'm going nutty thinking DID YOU EVEN FRICKEN TEST ALL THE GIRLS FOR STREP? (did you notice any kind of strep test was NOT mentioned?) Maybe they only tested the 1 girl who had a sore throat (remember, PANDAS was ruled out "because only 1 girl had a throat infection")... maybe they are in club of idiot docs who won't do a throat culture if there is no pharyngitis. What is wrong with these stupid docs who spend thousands on tests and can NOT think to do a simple throat culture?

 

That doctor also said the EEG showed the seizures weren't "real". And I'm thinking geesh, by saying that it makes it sound even more that the girls are "making it up". Pseudoseizures are seen with Sydenham's Chorea and PANDAS!!! http://jnnp.bmj.com/content/75/6/914.full

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I am thankful that Dr.Drew is covering this and said he would continue to cover this story.I am disappointed that they didn't give Dr.T. time to discuss treatment if it is PANDAS/PANS. Dr. Drew also made a comment about antibiotics,steroids,IVIG as a treatment but said it doesn't work very well. I disagree about this and wonder how he would even know! I am not sure how many more broadcasts I can watch about this being stress related.

 

Yes!!!! What a dolt! and I'm thinking, "how is that treatment for Conversion Disorder going? Does that work very well? with Lydia Parker who is on 9 medications and now blacks out (b/c of the meds?) and who is obviously not doing great at all.

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Mono...as in Epstein Barr Virus. The virus my beautiful

DD 12 surcumbed to last spring that caused such a devastating surge of pans symptoms. Extreme contamination fears, hiccup tic, OCD, anxiety, irrational weather fears, rages and lets not forget the anorexia nervosa (both presentations). She almost died after refusing to eat for. >20 days. EBV is ugly! The worst possible scenario with a subseptible PANS child. It moves in and stays put. No wonder these girls have issues.

[/quote

 

Could not agree more....I follow EBV in research blurps whenever I can. My brother-in-law has Type I DM- Juvenile Onset and MS (another poorly understood autoimmune disease).He is the poster child/man for being an autoimmune specimen:) He and I joke about it all the time, actually.One of the more recent findings is those that have had Mono in the past are at greater risk for MS later in life......hhhhhmmm. EBV connection.Often takes 10 years for accurate diagnosis of MS due to oddity and waxing and waning of symptoms. Almost makes you wonder if those suseptible PANS kids move right from EBV to MS on a continuum.

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One of the moms on the Dr Drew show said strep was never mentioned to them, so the Health Dept. dr saying they had ruled out any source of infection is "garbage". I honestly believe these DENT drs know it is something other than the very bogus definition of conversion disorder.

 

Colleen

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http://wnyt.com/article/stories/S2468945.shtml?cat=300

 

This article says there are 17 teens affected now, one of them does not even live in Leroy (she lives in Corinth), but traveled to Leroy last year.

 

 

From article:

One of those girls is 17-year old Lori Brownell, who had been a top scholar athlete, excelling in both softball and field hockey, before her symptoms began showing last year.

 

Lori has been posting regular YouTube videos intent on giving the disease the attention she believes it deserves so that she can help others learn to cope with it.

 

It just so happens Lori traveled through LeRoy last year with her softball team. And perhaps by coincidence, one of her teammates, Alycia Nicholson, is now also experiencing Tourette's symptoms that include twitching, convulsions, and joint pain.

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