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Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

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My husband, who does believe DS has PANDAS, but wavers on treatment (no meds preferred and frequently argues that I over react) was in tears and wants to watch it again tomorrow when he is more "awake". Also, already having texts and FB messages from friends and relatives in shock at what we've gone through after seeing it. I had already warned them that Sammy's story is much more intense than ours, but since Carter normally holds it together playing (since there is little structure) they don't see that much of it and they also didn't see him much in December/January when he was getting diagnosed as he was critical. I think this helped awareness for those around us. Hopefully it did so on a larger scale.

 

I am hoping that others that I'm not in such close contact with, our doctors, teachers, school nurse, etc... watched as well to get a better understanding.

 

I was surprised how much more info was in that short segment than the book! There was MUCH more similarity to our story than in the book actually.

 

As stated in the other thread though - I wish they'd knock it off with the "rare disorder" stuff. Of course, that is the basis for that show. I watch MD a lot :)

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I, too, liked it overall. Despite having read "Sammy" and hearing Beth speak, a few new pieces of info showed up in the piece that I either hadn't heard before, or that I'd forgotten having read or heard.

 

I have one major pet peeve about the program, though: How many times did that narrator have to call PANDAS "an extremely rare condition"?!?!?! :)

 

I've got to believe Beth didn't have a say in that, given the number of families with PANDAS she's come to know over the last year or so! Still, SO annoying!

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I thought it was well done and my husband, who does NOT read everything under the sun about PANDAS like I do, learned a great deal and saw so many similarities with our son. It was so good to hear him realize that the behaviors are/were NOT due to defiance. I was a little concerned over the emphasis on the possibility of permanent brain damage, as I do not know of any research on that.. but perhaps there is something I have missed.

 

If Beth or Sammy read this - thank you for doing this and for helping us all.

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How many times did that narrator have to call PANDAS "an extremely rare condition"?!?!?! :)

 

The first time they said "rare condition" both my husband and I said, "No, it's not" at exactly the same time. LOL

 

I thought it was fairly well done. I think I need to process it and see it again to really form an opinion. There are things that bugged me, but I haven't put it all together in my head yet.

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I thought it was well done and my husband, who does NOT read everything under the sun about PANDAS like I do, learned a great deal and saw so many similarities with our son. It was so good to hear him realize that the behaviors are/were NOT due to defiance. I was a little concerned over the emphasis on the possibility of permanent brain damage, as I do not know of any research on that.. but perhaps there is something I have missed.

 

If Beth or Sammy read this - thank you for doing this and for helping us all.

 

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness :) Some of the younger individuals HAVE diagnosed pandas.

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I found it extremely frustrating. It mentioned two weeks of anti biotics. Who on Earth gets better after only two weeks. Now doctors will give a two week prescription and when the kids aren't better will say it's not PANDAS. Also this made no mention that some kids don't have high strep titers. Half of our kids don't yet, through long term antibiotics have had relief from symptoms like Sammy. No mention that some kids need IVIG. I just feel that although it's great that the word is getting out there, still only half the kids fit the mold.

 

Nancy

 

Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

I haven't watched yet (not 10:00 here yet), but maybe if you exclude kids w/ low titers and those that need IVIG or PEX, it is a rare disorder!

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I thought it was well done and my husband, who does NOT read everything under the sun about PANDAS like I do, learned a great deal and saw so many similarities with our son. It was so good to hear him realize that the behaviors are/were NOT due to defiance. I was a little concerned over the emphasis on the possibility of permanent brain damage, as I do not know of any research on that.. but perhaps there is something I have missed.

 

If Beth or Sammy read this - thank you for doing this and for helping us all.

 

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness :) Some of the younger individuals HAVE diagnosed pandas.

Well, I'm still not sure it causes actual brain damage, even though I think it caused my daughter's severe autism. I think it does interfere w/ development, so if you get it young and it goes untreated, it can really mess you up good. We are beginning to see some of that early childhood development creep in now that my daughter is getting treated- I don't expect she'll lose the autism altogether, but I think the brain is still structurally intact.

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I found it extremely frustrating. It mentioned two weeks of anti biotics. Who on Earth gets better after only two weeks. Now doctors will give a two week prescription and when the kids aren't better will say it's not PANDAS. Also this made no mention that some kids don't have high strep titers. Half of our kids don't yet, through long term antibiotics have had relief from symptoms like Sammy. No mention that some kids need IVIG. I just feel that although it's great that the word is getting out there, still only half the kids fit the mold.

 

Nancy

 

Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

 

I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks.

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I found it extremely frustrating. It mentioned two weeks of anti biotics. Who on Earth gets better after only two weeks. Now doctors will give a two week prescription and when the kids aren't better will say it's not PANDAS. Also this made no mention that some kids don't have high strep titers. Half of our kids don't yet, through long term antibiotics have had relief from symptoms like Sammy. No mention that some kids need IVIG. I just feel that although it's great that the word is getting out there, still only half the kids fit the mold.

 

Nancy

 

I must have missed that about the 2 weeks - or perhaps I just filled it in mentally since I'd read the book. It would be ridiculous to state that he had 2 weeks of antibiotics, because he had them for a very extended period of time, and they had to keep upping the dose for a while... but I guess time does not permit all tohse details.

 

Regarding the high strep vs. low titers and IVIG issues - My son also does not fit the high titer mold... and we will likely be heading to IVIG at some point... but the show was about Sammy - and that was not Sammy's experience, so I can't really fault them there. I would love to see more info. out there on kids WITHOUT high titers, though!

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I found it extremely frustrating. It mentioned two weeks of anti biotics. Who on Earth gets better after only two weeks. Now doctors will give a two week prescription and when the kids aren't better will say it's not PANDAS. Also this made no mention that some kids don't have high strep titers. Half of our kids don't yet, through long term antibiotics have had relief from symptoms like Sammy. No mention that some kids need IVIG. I just feel that although it's great that the word is getting out there, still only half the kids fit the mold.

 

Nancy

 

Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

 

I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks.

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I found it extremely frustrating. It mentioned two weeks of anti biotics. Who on Earth gets better after only two weeks. Now doctors will give a two week prescription and when the kids aren't better will say it's not PANDAS. Also this made no mention that some kids don't have high strep titers. Half of our kids don't yet, through long term antibiotics have had relief from symptoms like Sammy. No mention that some kids need IVIG. I just feel that although it's great that the word is getting out there, still only half the kids fit the mold.

 

Nancy

 

Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

 

I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks.

 

My son has documented bilateral brain damage. This was evident on eeg after what we think was his first episode. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger.

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My son has documented bilateral brain damage. This was evident on eeg after what we thought was his first episode but in retrospect most likely was not. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger

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I thought it was well done and my husband, who does NOT read everything under the sun about PANDAS like I do, learned a great deal and saw so many similarities with our son. It was so good to hear him realize that the behaviors are/were NOT due to defiance. I was a little concerned over the emphasis on the possibility of permanent brain damage, as I do not know of any research on that.. but perhaps there is something I have missed.

 

If Beth or Sammy read this - thank you for doing this and for helping us all.

 

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness :( Some of the younger individuals HAVE diagnosed pandas.

 

The PANDAS docs I've spoken to have said PANDAS is analogous to a bad sprain that slowly heals and can take several months for full recovery. They specifically said sprain, not break (i.e. lesion or damage). I suppose one may never be completely as good as one originally was pre-sprain, but brain damage is an inflammatory term (no pun intended) that shouldn't be thrown around without any parameters, IMO.

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