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[colleenrn]

Thank you for posting! I would like to know of few things:

 

1. When they said they "took duplicate throat swabs simultaneously" did they mean that literally? B/c if so, they did not get a good sample. Putting two swabs together does not allow each swab to collect the best sample. They should know this. And, did they vigorously swab both tonsils each and every time?(sometimes one tonsil cultures positive while the other cultures negative)

 

2. How long did they grow it out? If it was not grown out for a full 72 hours it could be a false negative.

 

3. Did it occur to any of the clinicians that the throat is just one place that strep can live? Did they search the child's skin on a regular basis for any signs of strep infection on the skin (impetigo)? Did they do regular perianal swabs? Did they look for strep in the gut? Did they do sinus xrays to look for strep in the sinuses? How would they know if the strep was in the adenoids (can be in adenoids and not tonsils)?

 

When study said, "Remarkably, three of the six observed hits occurred in the same non-PANDAS case, an 11-year-old boy diagnosed at entry with TS, OCD, ADHD, and generalized anxiety disorder. At his baseline (entry) assessment, no association between prior GABHS infections and tic worsening was documented. At each of these exacerbations, his OC symptoms increased, but there was no sudden increase in his YGTSS, Multidimensional Anxiety Scale for Children, or Child Depression Inventory–Short Version scores.it made me really wonder if that child has PANDAS (TS, OCD, anxiety, and ADHD). This child was in the non-PANDAS group.

 

Colleen

[Iowadawn]

I haven't read through all your input, but I am going to throw out my thoughts. I believe it is no coincidence on the timing of the release of these various papers and the study. That's my first thought. My second is that Leckman is making the case that "It ain't just strep causing these exacerbations." I think there is a method to their madness. I think they are wanting to get all their ducks in order before they change the name. Bus----sterrrr!!!!!!! MHO. Dawn

[Iowadawn]

A lightbulb just went on in my head. Just tel me if I need to shut it off----Could this paper being published be the way for the naysayers to get to save face??----"See there was never PANDAS, it was really XYZ Disease. We didn't believe in PANDAS but,We believe in this. That is all we were ever trying to say." Hmmmmm?? I really think there is an ulterior motive, here. Tell me if you think I'm all wet. Dawn

[browneyesmom]

Nope Dawn, I don't think that's so off the radar. Frankly, I'm suspicious what the deal is too and why they are releasing this right now.

[nevergiveup]

Politics, but in the meantime, how many pediatricians whom do not know the history or politics behind all this will discontinue abx and show paper to parents as justification that Pandas does not exit. Why can't the naysayers just admit they were skeptics, short sighted, and just plain wrong in not investigating and treating this as an autoimmune condition. They still owe many parents an apology for their lack of care. Changing the name, they maybe able to fool their patients with this, but they cannot fool themselves.

[butterflymom]

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Edited October 5, 2015 by tampicc

[eljomom]

I didn't read the whole paper, as reading the abstract pretty much let me know it was a "remake" of the Singer Kurlan paper.

Could it be that what we take out of this is that these kids (pandas kids) are reacting to way more than just strep, and that the tunnerl-vision focus on strep has really tied the hands of doctors, researchers, etc.??

[nevergiveup]

I do not think any of these guys needed more papers published, Gilbert, Leckman, Singer, no not really. This data has been around a year or longer and I am not sure what the study is trying to say, other than abx is not necessary for pandas. That kids with positive throat cultures do not have symptoms flair. Seems odd to look at only throat cultures, last time my dd was in er they wanted to do a blood culture on her, said immune deficient kids don't test positive always on throat culture. All this about strep, proving the strep cnx. Reminds me of autism, all studies funded were to prove vaccines were safe rather than finding treatments for autism. If these guys agree this is autoimmune let's move it on, and start studies that look at the immune system, not throat cultures. Its like trying to find the trigger for RA, LUPUS or MS all have multiple infectious triggers, but no one really cares too much about that. Ok so tics and ocd are triggered by herpes, myco, strep, staph , sinus infections, flu, lyme....All this genious, our best neurologists, I think we should expect more.

[eljomom]

EX-ACT-LY!!!!!!!!!!!! Could not agree more! They are spending all their time on the wrong thing, in my opinion. Take the blinders off Okay, that wasn't nice, but you do start to want to beat your head against a wall.

[Iowadawn]

I'm just a bit cynical---like George Carlin likes to say: "It's a conspiracy, man!" I would agree these guys don't need more publishing. The temp in the room at the gathering of PANDAS docs & the naysayers was not exactly amicable I was told. The changing of name seems to be key to them saving face. I'll stick with my original feeling that what is occurring is "an alignment of all the planets." I really think it is going to be for the best--never fast enough--in the end for this disease & all those suffering, whatever it will be called. I am going on nothing but my gut instinct. I could be all wet, but I truly think there is a method to the madness. We'll just have to wait--some more. Dawn

[nevergiveup]

I think they may start aligning, but many r going to go down kicking and screaming!!! Gilbert last week diagnosed a child with pandas but told mother to try and get abx from pediatrician. Would not prescribe himself, talk about going down kicking and screaming, diagnosing but not treating. Life is totally different now than 7 yrs ago, many now know of pandas. But I think identifying, diagnosing, and treating will still be done very reluctantly by our main stream neuros. CBT will be pushed, even though finding a doc who truly specializes in CBT is very hard, abx will be denied, and ivig will be reserved for the most severest sudden onset cases. We will need to keep fighting for proper care. I do believe though, and I think u are so right, first they must discredit pandas before renaming. Its done all the time in medicine, nothing new. CYA or politics. I love the internet though, it is truly challenging the way docs do business. Information is now available with a push of a button, we can challenge them and they better get use to it cuz the educated patient is growing in numbers.

[thereishope]

If you know the mom, tell her to ask to see her child's med file and make sure he put the dx in it and marked the "right box". Trust me on ths one.

 

I think they may start aligning, but many r going to go down kicking and screaming!!! Gilbert last week diagnosed a child with pandas but told mother to try and get abx from pediatrician. Would not prescribe himself, talk about going down kicking and screaming, diagnosing but not treating.

[colleenrn]

So Gilbert confirmed a diagnosis of PANDAS and confirmed the need for antibiotics, yet won't prescribe them himself. So what if that mom cannot get antibiotics from her pediatrician? IMO, it then becomes malpractice. Dr says kid needs antibiotics. Dr. won't prescribe antibiotics. Child has untreated strep and possibility of dangerous, even life threatening outcome. Then what? Who takes responsibility for that child then?

Colleen

[nevergiveup]

Oh, he's smarter than that, verbally says Pandas, but writes as diagnosis tic disorder and ocd.

[thereishope]

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Edited January 23, 2011 by Vickie