Dad on Dr Drew rocked tonight!

[3boysmom]

Wow, I think the dad on the phone...was it Jim?....he did an excellent job explaining PANS/ PANDAS for being so new to all this! Sounds like an awesome daddy!!!

[EAMom]

Yes, he did a great job!

[Jv83]

i didn't even know dr. Drew had a show! Wow how sad...what channel is it on. This jv

[EAMom]

HLN (which is HN on my TV).

[thenmama]

Yep- he totally rocked it! Informed, tough, but diplomatic. He's clearly on the ball and fighting for his kid! Love that he pointed out that the Dent docs are misinformed about PANS, didn't perform sufficient testing to rule it out, and they don't have the expertise necessary to evaluate and diagnose these kids. Also- he pointed out that the symptoms don't match well with CD-- and mentioned that had previously been highlighted on Dr Drew's show.

 

I'm not convinced it'll necessarily be PANS-- there are so many factors and possibilities to investigate in this case-- but I'm convinced it's not conversion disorder (then again, I don't believe in Conversion Disorder). But, even Dr Drew admitted (to Dr Bowtie) that his "countertransference" radar was failing to pick up the Conversion Disorder vibe from many of the LeRoy kids. Hopefully he can repair whatever false signaled his CT radar for the other few girls:)

 

 

 

TH

Edited February 1, 2012 by thenmama

[nicklemama]

Finally, Mr DuPont was given enough time to actually speak. He did very well.

[T_Mom]

OK, I have searched all over the Dr. Drew website and I have watched about 10 clips on LeRoy but cannot find one where a Dad calls in -- anyone have a link to this?

thanks--

[PowPow]

T.mom, it was last night. Dr drew, the harvard guy and bowcock. The dad was great. I was at work trying not to start cheering at the tv:) if his kid does not have pans- he could still be our spokesman!

[concerned lady]

OK, I have searched all over the Dr. Drew website and I have watched about 10 clips on LeRoy but cannot find one where a Dad calls in -- anyone have a link to this?

thanks--

 

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

 

I searched and searched, but couldn't find the Le Roy father Jim DuPont's call to Dr. Drew. I WOULD LOVE TO HAVE A LINK TO THIS, TOO! CAN ANYONE HELP provide a link?

 

Dr. Drew is also leaning way too much towards accepting "conversion disorder" for some of the Le Roy girls. My hubby was so disgusted by Dr. Drew's NOT talking about PANS/PANDAS/PITAND, or about vaccinations, that he scolded Dr. Drew for this, out loud, while I was yelling at Dr. Drew on the TV.

 

I also very much liked the thread here, linking vaccinations & environmental insults, to PANS! here's a link:

http://www.latitudes.org/forums/index.php?showtopic=16283

 

Carol

http://cantbreathesuspectvcd.com

[EAMom]

OK, I have searched all over the Dr. Drew website and I have watched about 10 clips on LeRoy but cannot find one where a Dad calls in -- anyone have a link to this?

thanks--

 

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

 

I searched and searched, but couldn't find the Le Roy father Jim DuPont's call to Dr. Drew. I WOULD LOVE TO HAVE A LINK TO THIS, TOO! CAN ANYONE HELP provide a link?

 

Dr. Drew is also leaning way too much towards accepting "conversion disorder" for some of the Le Roy girls. My hubby was so disgusted by Dr. Drew's NOT talking about PANS/PANDAS/PITAND, or about vaccinations, that he scolded Dr. Drew for this, out loud, while I was yelling at Dr. Drew on the TV.

 

I also very much liked the thread here, linking vaccinations & environmental insults, to PANS! here's a link:

http://www.latitudes.org/forums/index.php?showtopic=16283

 

Carol

http://cantbreathesuspectvcd.com

 

Okay, I found the TRANSCRIPTS (not a video). Here's the link http://transcripts.cnn.com/TRANSCRIPTS/1201/31/ddhln.01.html (I copied and pasted some of it):

 

Now, we`ve got this whole toxic story here. I`m worried that that`s predisposing or causing or precipitating or contributing to this in some way, and that`s why we`re going to keep covering. Dr. Sharp, I`ve got Jim Dupont back on the line. So, Jim, what is your reaction to what`s going on the last few days?

 

VOICE OF JIM DUPONT, DAUGHTER SUFFERS FROM MEDICAL ILLNESS: Well, I am disappointed that the school would not allow Erin Brockovich`s lead environmentalist to start taking a few tests. I think that that was a big mistake, because it certainly made us lose faith in the school. You know, she said that she, you know, wanted the best interest of the kids, and what would it hurt to take a couple of soil samples.

 

So, she didn`t need to make such a big deal about that. I mean, obviously, she should have been more cooperative. And other than that, in the past few days, you know, right now, other than that, we`re waiting for the environmental team to show back up in a couple of weeks with the proper, you know, legal paperwork so that they can hopefully do a very stringent environmental test for us.

 

PINSKY: How`s your daughter doing now? Is she getting better? Is she OK?

 

DUPONT: In my case, she always was -- she started with a very heavy onset of similar symptoms that you`ve seen in other girls, and through the shots of muscle relaxers and increasing her dosages of her antidepressants, it, you know, makes it so that it`s tolerable. So, she definitely has milder symptoms than a lot of the other girls.

 

PINSKY: Now, Jim, you have said that you think this could be a combination of environment such as these toxic influences, and perhaps, even something like the PANDAS syndrome, which is infectious.

 

DUPONT: You know, one way or another, I do think that we have a combination of problems here. From all the experts and doctors that I talked to that have been good enough to come forward and offer advice, I mean, I learned more about this than I ever thought I wanted to know.

 

And one thing that they make me clear on is that you can`t diagnose conversion disorder, unless, you have ruled out environmental and infectious disease. And they certainly have not because there are so many more stringent tests that need to be done medically as well as environmentally.

 

And as you said earlier, yes, if the girls are exposed to something toxic, and that could have been the predisposed part which leaves a window of opportunity for a PANDAS situation or there`s other diseases like that like (INAUDIBLE) where you basically the anti-bodies cause an autoimmune attack on the ganglia, and that`s the way it was described to me.

 

PINSKY: No, that`s right. That`s exactly what happens. That`s exactly what happens. And unfortunately, the biology of tic is not that well worked out. So, we have nowhere to look, you know, with great specificity in the brain. And then, there could be an overlay in some of the girls, it could be yet another layer, which is the conversion could actually be here in some of them.

 

DUPONT: Well, you know, I thought about that. And you know, you may have some kids that are definitely sick and have some infectious disease from a predisposed condition, and then, you may even have, you know, as you say some of them may have conversion disorder, but the only issue I have with that is that you outline through definition last night on the air that the symptoms don`t really match up.

 

So, I`m a little confused about that. And I think that we need to look further and get these very stringent environmental and medical tests back and go from there, so that we can, at least, find things or not find them to rule them out.

 

PINSKY: And I agree with you, Jim. My position is, you know, again, I haven`t taken care of a lot of conversion over the years. You just kind of keep looking just in case, I mean, why not. And we came upon this toxic spill, and my goodness, what a coincidence. You got to wonder if it has something to do with this.

 

Another question, Jim, is, do these girls -- do you know if anything that they have in common, the girls, that would sort of connect them socially or where they would know about each other`s tics or anything like that?

 

DUPONT: You know, I have organized a parental group which has more than two-thirds of all the families. And, we went down that road, and the ages, you know, range from 13 all the way up to 18. So, a lot of these girls do not have the same habits. They don`t even -- they don`t necessarily even know each other.

 

And we have not been able to really label a common denominator as far as their whereabouts or anything like that other than the school, itself.

 

PINSKY: Now, Dr. Meckler who treated some of the affected kids are diagnosing -- come up with the diagnosis conversion. You`ve seen him on some of -- he actually was on this show, too. He released a statement.

 

It states, quote, "We at the DENT Neurological Institute understand the concern and fear the patients and their families are having in regards to the diagnosis that has been established. We also appreciate the input of any credible expert as long as it is in the best interest of our patients. Their health and well-being has always been our primary goal." Jim, do you have any response to that?

 

DUPONT: Well, you know, as he`s checking up this the conversion disorder diagnosis, I`m only going to speak about my own situation, because I talked to DENT Neurological, his associate, Dr. (INAUDIBLE) on the phone, and basically voiced my concern about the stringency of the tests that were done. And, I said, you know, what about PANDAS.

 

Well, she told me, she says, well, we checked the stress levels, and PANDAS only occurs in younger children. If I hadn`t had so many doctors and other experts call me and advise me that they really need to take the P out of PANDAS, because it does happen in people that are up to 18 years old, and sometimes, beyond, and the fact that those tests are much more stringent than that.

 

As a matter of fact, strep may actually not even be a factor. It could be gone as the antibodies have taken over and caused the issue. So, basically, what I was told is those tests have to be done with negative DNA, strep antibodies, estrogen levels in girls, and some certain titers they look for.

 

And also, the person has to be an expert to be able to decipher the results of those tests. So, to be honest with you, I think that while they mean well, they just don`t know. This is not their expertise. That`s my personal opinion from the conversations I`ve had.

 

PINSKY: Well, Jim, I appreciate you talking to us. And again, our well wishes go out to your daughter. I`m glad she`s doing better. And by the way, I have read an extensive literature out there on other post- infectious causes of these strange movements and tics. There`s a lot of literature. It is very confusing, but I`m glad to see you`re arming yourself with information.

 

You certainly seem up on the topic, and we will continue to kind of pursue this and ask questions, and mostly, see if we can`t come up with some answers on the environmental influences, because that`s something that`s a little more discrete quality to it that might protect other people from problems down the line.

Edited February 3, 2012 by EAMom

[T_Mom]

Thanks EAMom-- Wow! The Dad did a GREAT job and he has a good understanding of the potential influences --

I certainly hope this is solved soon for the sake of the girls and their parents.

[smartyjones]

awesome EAmom -- again, thanks for being on this!

 

wait a minute -- who's the 'expert' on this show-- from reading this, sounds to me like Dupont is!!!

[trggirl]

Does anyone know what they are looking for in the Estrogen levels that the dad mentioned?

[Orion]

Does anyone know what they are looking for in the Estrogen levels that the dad mentioned?

 

Pure speculation on my part, but my daughter's movement disorder (PANS- she's positive for Lyme, Myco.Pn, strep and other pathogens) worsens just before her period, so I am guessing they are looking for low levels? One LLMD said "when estrogen levels are low, the germs come out to play".

 

I hope someone here has a more scientific answer to this question.

[EAMom]

Does anyone know what they are looking for in the Estrogen levels that the dad mentioned?

 

Does anyone know if Dr. T. has checked estrogen levels their kids (the younger ones, or the older ones).

 

I found this on a Sydenham's Chorea website http://www.wemove.org/syd/syd_cau.html re estrogen:

 

"Also, as mentioned previously, some investigators suggest that sex hormones (e.g., the female hormone estrogen) may be a contributing factor in some instances of Sydenham's chorea. This is based upon various findings, including the fact that females are more commonly affected than males, particularly in the years around puberty, and that recurrences have been associated with estrogen therapy or pregnancy."