Possible PANDAS child on Oprah today

[kmom]

I started a topic on the Lyme board b/c I felt the same way. I was so stressed watching the show. It was a like a train wreck. It pained me to watch but I kept hoping there would be some major turn in the story about how they figured out there was an infectious trigger and they lived happily ever after...the show I've been dying to see on tv since no one seems to know about infections causing these awful symptoms. I wrote to the producers 2x. The 2nd times was just to urge them a bit more to at least pass info onto the mom so she can investigate and rule out an infectious trigger. I also commented on the message boards just now. I tried not to pinpoint one dx like only PANDAS or only Lyme b/c my kids' recovery was slowed down by me only focusing on PANDAS and not Lyme. They have both. So we never got the consistent gains w/ PANDAS treatment b/c Lyme Borrelia and Bartonella were overlooked w/ insensitive testing. I believe we wasted a lot of time, money, missed school & tough days as natural bacterial load die off cycled every 28-30 days w/ Borrelia and every couple days w/ Baronella so it was one big unidentifiable messs w/ PANDAS doctors saying, we're not sure why they are ramping up w/ symptoms but probably exposed to strep in school. But that wasn't it. Now we know it was the Lyme and having much better gains and a rather normal life! Hindsight is 20/20 though, right? If our experiences could help even just one more child, the letters to Oprah are very worth it!

[Guest TwinCitiesMom]

Should we choose 3 different news and or television programs to focus our efforts to expand pandas/lyme awareness? Once we have chosen 3 different programs, we could then begin a campaign to encourage these organizations to dedicate a news program to "Microbes and Mental Illness." This keeps the topic broad enough to encompass pandas and lyme. It would also be a topic of interest to all age groups since we know that lyme may cause neurological problems at any age. Should we do the leg work to provide the latest papers, dvd's, and major players to the producers of these shows? News and television programs that may fit the qualification could be programs like: Oprah, The Dr. Oz Show, The Doctors, Dateline, The View, etc... Any thoughts

[MomWithOCDSon]

Should we choose 3 different news and or television programs to focus our efforts to expand pandas/lyme awareness? Once we have chosen 3 different programs, we could then begin a campaign to encourage these organizations to dedicate a news program to "Microbes and Mental Illness." This keeps the topic broad enough to encompass pandas and lyme. It would also be a topic of interest to all age groups since we know that lyme may cause neurological problems at any age. Should we do the leg work to provide the latest papers, dvd's, and major players to the producers of these shows? News and television programs that may fit the qualification could be programs like: Oprah, The Dr. Oz Show, The Doctors, Dateline, The View, etc... Any thoughts

 

I think that's a great idea! I'd written 20/20 and Dateline already several months ago on the heels of stories they did regarding OCD. I also contacted Oprah's producers . . . probably a year ago now . . . but never heard any response their, either. I'm thinking it's going to take a "groundswell" to get anything going. So choosing and focusing, with each of us writing in, might be the best answer.

[Guest TwinCitiesMom]

A News program could also help provide patients for the IVIG study. Let's think about which television programs we should focus on. Maybe someone has a connection or suggestion. We should consider how we can best "sell" a show about microbes and mental illness. It is "Strep Season," although it is always strep season for pandas families. Lyme season is coming soon. Not sure, but I think PBS is going to air "Under our Skin" this spring. Let's think about what would help convince the producers to do a show. I am a health professional, not a media person so my knowledge is limited in this area. Any suggestions for the best approach in reaching the producers?

[kmom]

@ TwinCitiesMom--I'll PM in a bit. Another mom from Lyme board and I have been planning something similar. Her background is news reporter (air/print) and maybe we can make a collaborative effort. I need to talk to her. We have a ph. meeting scheduled today. I am think together we'll be stronger than separate.

[Guest TwinCitiesMom]

Sounds Great!! Yes we need to work together.

[SarahJane]

The mom from Oprah has a Facebook page (Saving Zach) and is launching a web site tomorrow: savingzach.org. (Sounds familiar, eh?) I've already posted comments on Oprah's FB page, Oprah's site, friended the mom on her FB page & sent an email to an address she had listed in a comment. Not sure what else I can do without her getting a court order to tell me to stop talking about PANDAS. I know that so many of us have mentioned PANDAS in our comments to the show & to the mom. I've also been mentioning Lyme & MP as possible infections. I hope they at least consider infections, since it seems that all the focus was on mental issues (surprise...not). It was a very hard show to watch. As someone else said on here, I hope it has a happy ending too. I seriously don't think the producers knew what they had on their hands, which is weird because of the research that goes into the shows. And usually they have medical experts out the wazoo...none on this show. I hope they do some kind of follow up. You have to think that it doesn't have to be on Oprah's show...she has OWN now too.

[VickyLH]

The mom from Oprah has a Facebook page (Saving Zach) and is launching a web site tomorrow: savingzach.org. (Sounds familiar, eh?) I've already posted comments on Oprah's FB page, Oprah's site, friended the mom on her FB page & sent an email to an address she had listed in a comment. Not sure what else I can do without her getting a court order to tell me to stop talking about PANDAS. I know that so many of us have mentioned PANDAS in our comments to the show & to the mom. I've also been mentioning Lyme & MP as possible infections. I hope they at least consider infections, since it seems that all the focus was on mental issues (surprise...not). It was a very hard show to watch. As someone else said on here, I hope it has a happy ending too. I seriously don't think the producers knew what they had on their hands, which is weird because of the research that goes into the shows. And usually they have medical experts out the wazoo...none on this show. I hope they do some kind of follow up. You have to think that it doesn't have to be on Oprah's show...she has OWN now too.

 

I just had a look at her webpage and her child is being helped by energy therapy. The entire website seems devoted to sharing how this has helped him.

 

-Vicky

Edited February 22, 2011 by VickyLH

[pixiesmommy]

This is bothering me on a far deeper level than Saving Sammy, etc. ever did. I really need to step away from it. I did not watch the show, by the way, just the previews online that I was linked to.

 

I have such a hard time swallowing the fact that someone would just STOP at energy therapy (not that it doesn't work- it totally may, but look for an underlying cause!!!!) and not go on to try to help their child. I hope that she will take our PANDAS/Lyme, etc comments to heart and her son gets some help.

[kmom]

I agree. It bothered me to pieces all weekend. I wrote to the producers immediately...not once but twice over the weekend. I suggested the mom exhaust other avenues by looking into chronic infection whether that be strep, Lyme co-infections, Mycoplasma, yeast, etc. I didn't want to slap a specific dx on the kid b/c I often scold myself for pidgeon holing my 2 kids into only a PANDAS Dx early on and spent a lot of time and money seeing top PANDAS specialists who really didn't know how to Dx Lyme simultaneously...hindsight is 20/20 though so I focus on the fact we got clarity in time. I also wrote on the Oprah board yesterday. Then I realized as the day went on, a lot of people gave Oprah and the mom a lot of food for thought and w/ that, the mom needs to make the concious decision to open her eyes and rule out other possibilities. I have found along the way some parents are so grateful for some improvement that they aren't willing to rock that boat to get to the other bugs lurking in their kids to get closer to that 100% recovery because 75% better is their new normal and good enough compared to the horrible place their kid was before. So maybe that is this mom's perspective...energy therapy and him being at a special school has made their life livable so why rock the boat? It isn't my definition of fair or a good life when I hear that poor kid talk but I realized some people aren't going to entertain the thought of infection causing these neuropsych issues b/c their doctors have convinced them otherwise. Dr.'s, therapists and pharm co. are going to make a heck of a lot more $ on a lifelong mentally ill patient than they will on a person treated for chronic infection who actually gets off abx in time. Sounds harsh but I think there's that componenet to look at too.

 

What bothered me the most was that I started to get upset yesterday b/c for the 1st time I started 2nd guessing my own kids' treatment--thinking, how could all those on the forum (small amt of people compared to the world), myself and the small amount of doctors we all know and see for PANDAS and Lyme have the answers and other parents and doctors not entertain bacteria being the root cause for these bizarre behaviors. My mom put me back into reality by saying, "Are you kidding me? You have clear proof your kids are so much better. Don't let this situation make you 2nd guess all the work & healing thus far. It wasn't luck that they are in the good place they are in." She told me to go back to my home video footage that isn't pretty from summer and fall and that will clearly remind me how far my kids have come since the start of this mess. Sometimes we just need our moms to straighten us out even when we are moms! So Pixiesmom, I get it. I had to put in my 2 cents to Oprah and then put it out of my mind b/c I get too upset to think the mom will dismiss our info.

[LNN]

I'm not sure any of us are inclined to re-think our points of view as long as those beliefs work for us. I was told about lyme for 6 months before I was ready to consider it - and then only as a last resort. Even now, I still feel more comfortable on the Pandas forum because of the conversations regarding behaviors, even tho strep hasn't been in the house for a long time. It's part of who I am. So as long as this mom feels things are working for them, I think all you can do is plant seeds and offer small amounts of information that she may return to later if she needs to look beyond what's working today. Sometimes we shift our beliefs in seismic ways and other times they shift slowly if at all.

 

I think we can all relate to a mom who was faced with a stark and awful reality of raising an emotional train-wreck of a kid. She found something that has been really powerful and feels compelled to share it and helps others. At this moment, in the wake of national interest and "fame", I doubt anyone would be open to being told they needed to keep digging. Perhaps put her facebook url on your calendars for later this year. Check in with her next fall when infections ramp up in school. That might be the time for new information to be absorbed.

 

Her son did strike me as having an awesome tool for coping with his emotions and I have to give him a lot of credit. Whether he calls it negative energy, anxiety, OCD...the ability to talk back to those feelings and control your own energy is an amazing tool that will serve him well throughout his life. It's a tool I could stand a little more of on those days I get overwhelmed...

[T_Mom]

KMom--You have one wise mom! I think all of us ponder the diagnosis, the treatment, etc. constantly--I know I do.

 

I too go back to the symptoms at their worst...Crippling sudden-onset OCD, writing/academic issues, mild ticcing, raging, etc. ...and then the effects from abx or steroids.

 

To read about PANDAS/PITAND is one thing--to live it and see it is another.

 

Hug your mom for me--