Today Show

[thereishope]

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Edited October 18, 2016 by vickie

[TiredMom]

I really have mixed feelings about the segment. I'm grateful for any attention PANDAS gets, and I cried with joy to see Sammy so healthy and happy. However, this felt like a "PANDAS Lite" segment. No mention of the fact you have to take antibiotics for a very long time, that sometimes they stop working, that sometimes you need steriods, IVIG, or PEX. That once this horrible process starts, ANY infection can be the next trigger - so only looking for strep won't help. NO mention of Swedo, Dr K or Dr Cunningham, just to name a few. How about mentioning the Latitudes support group, or PANDASnetwork.org? Everyone, including Dr Nancy, was acting like this was just discovered today, when Swedo's paper has been out for A DECADE.

[mama2alex]

I really have mixed feelings about the segment. I'm grateful for any attention PANDAS gets, and I cried with joy to see Sammy so healthy and happy. However, this felt like a "PANDAS Lite" segment. No mention of the fact you have to take antibiotics for a very long time, that sometimes they stop working, that sometimes you need steriods, IVIG, or PEX. That once this horrible process starts, ANY infection can be the next trigger - so only looking for strep won't help. NO mention of Swedo, Dr K or Dr Cunningham, just to name a few. How about mentioning the Latitudes support group, or PANDASnetwork.org? Everyone, including Dr Nancy, was acting like this was just discovered today, when Swedo's paper has been out for A DECADE.

 

I thought this was pretty good for the Today show. This is not a particularly "serious" show, but it does reach a huge number of viewers. You have to remember that the purpose of the segment was to promote the book, and I think they did a good job of that. Showing the video clips of Sammy, having the words "PANDAS," "OCD," etc flash on the screen so people would remember, all that was good. I think anyone watching that segment, who's child has had a sudden onset of OCD or tics will probably pick up a copy of the book and read it - then they'll learn all the details and hopefully be motivated to seek out more information. This is real progress.

 

I have to say I thought the doctor was not helpful. She obviously didn't know much about PANDAS, except that it's "controversial." It's too bad they didn't do a little more work and gotten someone like Dr. Swedo or Dr. Cunningham to respresent the medical point of view.

[ShaesMom]

It was definitely a very short segment and didn't go into any of the other symptoms other than OCD. I would have loved to have seen the separation anxiety mentioned and they barely mentioned tics. However, it not only flashed the word PANDAS but also the word STREP.

 

Let's all pray that this is just the beginning of something much bigger. Now is the time for every parent on this board to email NBC and tell them they have a ground breaking story that is much bigger than just Sammy.

[EAMom]

I thought the segment was great. It was short but you have to remember that the average american isn't necessarily going to sit down and pay attention to a really long video. Sometimes, shorter is better, to at least get the word out. If it is too complicated or too scientific, most people will just zone out. You have to remember that the average joe doesn't know what "autoimmune", "encephalitis", or "sydenham's chorea" means.

 

I agree that is would have been great to mention other possible symptoms (esp. separation anxiety).

 

I really liked that the author emphasized that her son didn't have any signs of strep throat. I also liked that she was angry b/c they suffered for a full year before anyone told her about a possible strep connection. And it was so great to see Sammy doing so well and I like that he was on the show with his mom.

 

I completely agree that the doctor on the video was really lame!

[ShaesMom]

I got to thinking some more about this after my last post and I feel really sad that her son was sick almost 10 YEARS AGO and here all of us are today still having a difficult time finding doctors and getting the treatment that our kids need. Look at how Dr. Nancy Liberman (i believe that is her name) down played the whole situation. Ten years later shouldn't the medical community be more on board--do they think that Sammy was an isolated case? It really makes me concerned about where Pandas will be 10 years from today.

 

That Doctor should have been saying "YES, this disease exists and is possibly effecting 100's of kids-many of them have been misdiagnosed with something else." She should have been telling parents to be your childs best advocate and to look further when given a dx of OCD &/or tourette's.

[pixiesmommy]

It makes me ANGRY. I read the book last night and finished it this morning. I watched the segment too and lo and behold if that dr that they had on the show wasn't EXACTLY the kind of doctor(s) she fired in the book because of their unwillingness to help her or even (loosely quoted) "run strep blood work on a kid who presents like yours because I don't believe in PANDAS no matter what the evidence."

 

ARGHHHH!!!!

 

The fact is, NOBODY wants responsibility. I think it comes down to legalities. No one wants to diagnose because then they have given you an answer and hold responsibility for either treating or referring you to treatment, and no one wants to treat because if they mess up then they're to blame for that. Again, ARGHHH!!! Do you know how many FIRM diagnoses we have for Pixie? NONE. But how many speculative?? Oh the list goes on and on. "It could be any number of things or it could be just the way she is." It COULD be ODD, ADD, SPD/SID, Bipolar....... on and on and on.... But what is it? Oh, no one knows. And they look at you like you are a bad parent and a distasteful person if you even raise and eyebrow in question about their theories or rather non-theories. Heaven forbid anyone actually LOOK at our children. I mean really take time and look at them. Pixie has a tremor. I've been noticing it for a month. In that month we have been to several various doctors, including a neurologist. Do you think any one of them has noticed?? If they HAVE, then they haven't told us. Most of them will hardly even make eye contact with her, let alone us, while we are in the appt.

 

I don't know what to do. It feels like there should be something to do. Write letters? March with signs down the street or in front of pediatricians who won't take us seriously?

 

And yes, 10 years ago and where have we gotten, exactly? We have, what, 2 or 3 doctors who are willing to do IVIG or PEX, which is GREAT, but what about the getting there? I don't mean the travel... which there is THAT too, but how did we all get here? Pixie has probably had PANDAS for years. When she was 16 days old she had her first unexplained fever, when she was 2 and 3 we had such ups and downs I thought I would not be able to handle her (I was a single mom too) and then at 4.5 she had her tonsils out and the ENT yelled at me, "How many untreated strep throats has this child HAD????" None to my knowledge. She was never diagnosed with strep because the pediatrician would roll his eyes at me when I would suggest any sort of test when she ran her random fevers, and when I mentioned her behaviors? Oh that was just "typical x(2,3, whatever) year old" and I was a bad parent, yet again.

 

Then at 5, she couldn't bear to be apart from me. She would cling to me in the bathroom, anywhere. I could not be a foot away. Then she started biting and rolling on the floor and spinning and talking in her made-up languages. What was fine to do/eat/say one day was tantrum-inducing the next. Then at 6, the fevers were so bad and frequent we were taking her to specialists constantly and coming up with nothing. Meanwhile she WAS getting strep, from rapid-tests, no less, and it was right there all along in front of us all. Then at 7, more of the same+ tics and refusal to do anything in school, then at 8 more tics and such rage that she was hospitalized in an out-patient facility for a week. At 8.5, I cried and mourned and broke down so often I thought that *I* would have to be institutionalized and then... by some chance, my husband typed into Google... "tourettes + rage attacks" and found this forum.

 

We had googled for years. But never those words in that particular combo. We had never come up with anything useful, but had traveled down every avenue to every specialist and come up empty. At two they could have taken a blood sample. At 6, when she was coming back positive on rapid tests, that could have been an AHA!! moment and we could have started treatment BEFORE the tics, before the rage attacks... but no.

 

And yet, when I said "PANDAS" to any doctor once we found this site? YES, they had heard of it! YES it was a possibility! Oh, but it was controversial and NO they could not help us find a doctor, no they could not do a throat culture, no they could not do ANYTHING to help and "bye bye" because you questioned something they didn't know much about and therefore you were bad news.

 

So I am angry. And I am heartbroken. And I feel defeated and yet somehow strong. And I want to help change it, but I don't know how and honestly CAN'T because of the lack of help we have RIGHT NOW while we are living this nightmare that one one believes is real. And sometimes I want to just scream.

[ShaesMom]

It makes me ANGRY. I read the book last night and finished it this morning. I watched the segment too and lo and behold if that dr that they had on the show wasn't EXACTLY the kind of doctor(s) she fired in the book because of their unwillingness to help her or even (loosely quoted) "run strep blood work on a kid who presents like yours because I don't believe in PANDAS no matter what the evidence."

 

ARGHHHH!!!!

 

The fact is, NOBODY wants responsibility. I think it comes down to legalities. No one wants to diagnose because then they have given you an answer and hold responsibility for either treating or referring you to treatment, and no one wants to treat because if they mess up then they're to blame for that. Again, ARGHHH!!! Do you know how many FIRM diagnoses we have for Pixie? NONE. But how many speculative?? Oh the list goes on and on. "It could be any number of things or it could be just the way she is." It COULD be ODD, ADD, SPD/SID, Bipolar....... on and on and on.... But what is it? Oh, no one knows. And they look at you like you are a bad parent and a distasteful person if you even raise and eyebrow in question about their theories or rather non-theories. Heaven forbid anyone actually LOOK at our children. I mean really take time and look at them. Pixie has a tremor. I've been noticing it for a month. In that month we have been to several various doctors, including a neurologist. Do you think any one of them has noticed?? If they HAVE, then they haven't told us. Most of them will hardly even make eye contact with her, let alone us, while we are in the appt.

 

I don't know what to do. It feels like there should be something to do. Write letters? March with signs down the street or in front of pediatricians who won't take us seriously?

 

And yes, 10 years ago and where have we gotten, exactly? We have, what, 2 or 3 doctors who are willing to do IVIG or PEX, which is GREAT, but what about the getting there? I don't mean the travel... which there is THAT too, but how did we all get here? Pixie has probably had PANDAS for years. When she was 16 days old she had her first unexplained fever, when she was 2 and 3 we had such ups and downs I thought I would not be able to handle her (I was a single mom too) and then at 4.5 she had her tonsils out and the ENT yelled at me, "How many untreated strep throats has this child HAD????" None to my knowledge. She was never diagnosed with strep because the pediatrician would roll his eyes at me when I would suggest any sort of test when she ran her random fevers, and when I mentioned her behaviors? Oh that was just "typical x(2,3, whatever) year old" and I was a bad parent, yet again.

 

Then at 5, she couldn't bear to be apart from me. She would cling to me in the bathroom, anywhere. I could not be a foot away. Then she started biting and rolling on the floor and spinning and talking in her made-up languages. What was fine to do/eat/say one day was tantrum-inducing the next. Then at 6, the fevers were so bad and frequent we were taking her to specialists constantly and coming up with nothing. Meanwhile she WAS getting strep, from rapid-tests, no less, and it was right there all along in front of us all. Then at 7, more of the same+ tics and refusal to do anything in school, then at 8 more tics and such rage that she was hospitalized in an out-patient facility for a week. At 8.5, I cried and mourned and broke down so often I thought that *I* would have to be institutionalized and then... by some chance, my husband typed into Google... "tourettes + rage attacks" and found this forum.

 

We had googled for years. But never those words in that particular combo. We had never come up with anything useful, but had traveled down every avenue to every specialist and come up empty. At two they could have taken a blood sample. At 6, when she was coming back positive on rapid tests, that could have been an AHA!! moment and we could have started treatment BEFORE the tics, before the rage attacks... but no.

 

And yet, when I said "PANDAS" to any doctor once we found this site? YES, they had heard of it! YES it was a possibility! Oh, but it was controversial and NO they could not help us find a doctor, no they could not do a throat culture, no they could not do ANYTHING to help and "bye bye" because you questioned something they didn't know much about and therefore you were bad news.

 

So I am angry. And I am heartbroken. And I feel defeated and yet somehow strong. And I want to help change it, but I don't know how and honestly CAN'T because of the lack of help we have RIGHT NOW while we are living this nightmare that one one believes is real. And sometimes I want to just scream.

 

AMEN SISTER!!!!!

[bronxmom2]

I agree, that doctor's strange reluctance to speak freely about PANDAS was very telling (and frustrating)

 

But the boy Sammy is so adorable, so happy and healthy, I wept anyway just looking at his face... oh please please let my son grow up and look like that one day! I keep going back to the clip just to look at his smile.

[ShaesMom]

I sent a copy of the link to everyone in my addresses including my kids' principal. The principal emailed back saying that a friend of hers' daughter was part of a study 10 years ago on the East Coast because of her Chorea!! She continues to take a monthly dose of abx. She is going to check into it further and she if she was part of the original Swedo study.

[mom md]

Maybe if we all band together and collectively write the show...along with People magazine, Good Morning America, Dr. Phil, etc...at least the drama seeking news shows will get it out and maybe the medical profession will have to pay attention. I have to say it makes me embarrassed for my profession on how this whole thing has been handled. As a physician, I am happy to tell my struggle and journey to anyone who will listen. I don't want to expose my child but I would do it if I could save another.

[melanie]

Maybe if we all band together and collectively write the show...along with People magazine, Good Morning America, Dr. Phil, etc...at least the drama seeking news shows will get it out and maybe the medical profession will have to pay attention. I have to say it makes me embarrassed for my profession on how this whole thing has been handled. As a physician, I am happy to tell my struggle and journey to anyone who will listen. I don't want to expose my child but I would do it if I could save another.

 

 

me too!!Im in!!

[thereishope]

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Edited October 18, 2016 by vickie

[Stephanie2]

Peg, I am right there with you. I wouldn't say that my son is as bad as Sammy. He does eat and he can function (unless he is at his very worst), but I would say my son's case is up there. And I agree that when it hits young (I believe it started with my son at the age of 20 months) it is almost impossible to dx. He has received so many dx's along the way: developmental delay, cognitive disorder, Sensory Processing Disorder, Auditory Processing Disorder, Bi-polar Disorder, Oppositional Defiant Disorder. It wasn't until he was 4 and he started having tics and then our OT mentioned that he acts quite OCD and then a few months later we got a positive throat culture than I suspected PANDAS. And even THAT took 9 months of research to come up with. There was no doctor who handed that dx to me. What complicated getting a dx further was the fact that my son was on Singulair and Zyrtec through much of his little life. Those drugs did a number on his behavior, so we were not able to pick up on the extreme difference (waxing and waning) in behavior between strep infections. He went off of Singulair and Zyrtec and became a different child overnight (he must have been non-PANDAS at the time). We couldn't believe it! Then 2 months later he fell apart out of the blue when he developed a throat infection. That's when I was able to pick up on a waxing and waning pattern. I could go on and on, but the point is that a little public awareness really could have saved my family 3 years of trauma. We have spent so much money along the way and my marriage has really suffered. I really pray that this book changes things. I really hope she ends up on Oprah. When the public becomes more aware, the MD's will be forced to follow suit.

 

The flip side is...my child has it much worse than Sammy and it does not make it easier to get treatment. And if it starts young enough, the connection to strep is harder to find because it disrupts development. So you don't have this picture of a "normal" kid spiraling into madness. You have a kid with abnormal development who goes through hellish periods of regression.

[Alex]

My wife went to see Beth Maloney give a talk at a Library here in Maine yesterday. She says it was a great lecture. Lots of crying as you can guess from lecturer and attendees. Anyway, she spoke a little about the Today show appearance and said that prior to the televised segment she had not spoken to Nancy Snyderman, the Today Show doctor, one iota. I find that mind boggling that the Today show would let Dr. Snyderman appear as the medical authority on this topic when she hadn't even spoken to the author or the boy who had the disease, and obviously new nothing about PANDAS.

 

Her skeptical attitude is exactly what you get when someone in the medical profession gets theiir first exposure to the idea that a mental illness could have an indentifiable medical cause. Very frustrating.