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From Dr. Trifiletti


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I just wanted to let the community know that I am scheduled to appear tomorrow 12/8 on TV as follows:

 

1. On the NBC "Today Show" at approximately 8:09-8:13 AM EST with Lauren and her mom. I am supposed to be interviewed by Dr. Nancy Snyderman and Meredith Viera.

 

I've been told I have 30-60 sec to explain PANDAS and its treatment ....

 

2. On the "Dr. Nancy" show on MSNBC at approximately 12:30pm EST. This is supposed to be a longer segment.

 

I'm going to try my best to paint a "fair and balanced" picture of things. What "textbook PANDAS" is, possible variants, things parents should look for, and areas for research. The idea is to disseminate good information and that many valid treatment options are possible depending on many factors.

 

 

Please let me know how you think things went, what we can do in the future.

 

Dr. T

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I just wanted to let the community know that I am scheduled to appear tomorrow 12/8 on TV as follows:

 

1. On the NBC "Today Show" at approximately 8:09-8:13 AM EST with Lauren and her mom. I am supposed to be interviewed by Dr. Nancy Snyderman and Meredith Viera.

 

I've been told I have 30-60 sec to explain PANDAS and its treatment ....

 

2. On the "Dr. Nancy" show on MSNBC at approximately 12:30pm EST. This is supposed to be a longer segment.

 

I'm going to try my best to paint a "fair and balanced" picture of things. What "textbook PANDAS" is, possible variants, things parents should look for, and areas for research. The idea is to disseminate good information and that many valid treatment options are possible depending on many factors.

 

 

Please let me know how you think things went, what we can do in the future.

 

Dr. T

\

Good luck Dr T

 

me and danny are wishing you luck

dont forget us now that you are famous

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This media attention is great news for PANDAS sufferers and their families. Dr. T we appreciate you speaking out for our group. One important message is that PANDAS is a spectrum and not all cases look alike and the treatments differ also. Finding a great Dr. is the first obstacle for PANDAS families. A Dr. who is willing to try treatments and stick by these PANDAS kiddos and give them personal treatment. Just getting the medical community behind us would be a huge plus! A generalized statement such as antibiotics will take symptoms away is not always true nor is IVIG or PEX or steroids always going to help. Sammy was blessed to be cured from PANDAs with antibiotics. PANDAS needs more research and documentaion such as Dr. Cunningham has done and NIMH and Sweedo to get the right information out there. Many Dr's are still unwilling to help and it will take the NIMH to make an up to date statement and give some clear cut direction for them to follow. I look forward to your segment. It is an exciting time for PANDAS patients. I am sorry this happened to Lauren but admire them for putting themselves out there.

 

This is great! Can't wait to see. Gee... explain PANDAS and its treatment in 30-60 seconds. No pressure there! Ha!

 

I'm so excited to see knowledgeable doctors in the news talking about PANDAS!

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I just wanted to let the community know that I am scheduled to appear tomorrow 12/8 on TV as follows:

 

1. On the NBC "Today Show" at approximately 8:09-8:13 AM EST with Lauren and her mom. I am supposed to be interviewed by Dr. Nancy Snyderman and Meredith Viera.

 

I've been told I have 30-60 sec to explain PANDAS and its treatment ....

 

2. On the "Dr. Nancy" show on MSNBC at approximately 12:30pm EST. This is supposed to be a longer segment.

 

I'm going to try my best to paint a "fair and balanced" picture of things. What "textbook PANDAS" is, possible variants, things parents should look for, and areas for research. The idea is to disseminate good information and that many valid treatment options are possible depending on many factors.

 

 

Please let me know how you think things went, what we can do in the future.

 

Dr. T

Thank you, Thank you, Thank you

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I'll have to TiVo this. We've been battling PANDAS unsuccessfully for 2 years now.

 

Dr. Trifiletti, any advice for a kid who didn't improve with IM Bicillin, Zithromax, Omnicef or 16 IVIG treatments?

 

Hey Ratlenhun, that's a lot of IVIG's! Worried Dad's son had several IVIG's, high dose Augmentin is what finally eventually made a big difference. Did your child have a good workup with an immunologist? (I don't remember much about your situation except that your child is autistic!) The other autistic kids on this forum (Peglem's, Melanie's) were found to have immune defiencies. Also, did you ever send blood work into Dr. Cunningham and what were the results? What dose of Azith. did you use and for how long and how much does your child weigh? What dose of IVIG did your child get? Was there any improvement at all with IVIG? Or was there improvement that just wasn't sustained? Have you noticed any improvement with Advil? How "sure" is the PANDAS diagnosis? How old is your child and what symptoms are your dealing with?

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Dr Triflilett, thank you. Thank you so much for bringing this to the media. I almost cried when I saw the video of Lauren and a professional in the medical field supporting the PANDAS "theory." Obviously, it is not a theory. My son has struggled with severe tics for 5 yrs after a strep infection. Tics set in within 24 hrs of beginning his antibiotics. Every doctor we have seen has wanted to put him on meds. I've watched him struggle every waking moment for 5 yrs. I don't think he has relaxed any of that time. God bless you and your effort.

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Dear Dr. T.,

 

Thank you for letting us now. I had hoped to be on TV this week talking about PANDAS. I have a 12 year old son that I am taking to Colorado next week for IVIG. I live in Southern California (Diana Pohlman mentioned my son to you).

 

Beth Maloney (Saving Sammy author) asked my son's pediatrician, Dr. Thomas Lin from Irvine, California to appear with her on the Bonnie Hunt show which is taping this Thursday, December 10th and airing on Friday, December 11th.

 

Dr. Lin, contacted me and asked me to join him because he felt that I had so much up to date information on PANDAS and that I knew more about it than him. He asked me to contact the producer of the show to see if I could join him.

 

I decided to ask Beth Maloney first since it is her book and her appearance. She responded back to me telling me that the producers had decided to just air the segment with her, no doctors or other parents.

 

I was so dissapointed because I wanted to talk about IVIG and PEX because it seems that Beth is talking so much about just antibiotics.

 

Please try to add that into your 60 seconds.

 

Thank you,

 

I just wanted to let the community know that I am scheduled to appear tomorrow 12/8 on TV as follows:

 

1. On the NBC "Today Show" at approximately 8:09-8:13 AM EST with Lauren and her mom. I am supposed to be interviewed by Dr. Nancy Snyderman and Meredith Viera.

 

I've been told I have 30-60 sec to explain PANDAS and its treatment ....

 

2. On the "Dr. Nancy" show on MSNBC at approximately 12:30pm EST. This is supposed to be a longer segment.

 

I'm going to try my best to paint a "fair and balanced" picture of things. What "textbook PANDAS" is, possible variants, things parents should look for, and areas for research. The idea is to disseminate good information and that many valid treatment options are possible depending on many factors.

 

 

Please let me know how you think things went, what we can do in the future.

 

Dr. T

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