Reference to PANDAS in author's talk around country

[mom md]

Wendy Mogel is a New York Times Times best selling author of The Blessing of A Skinned Knee and The Blessing of a B Minus who just came through Charlotte and came and spoke at two private schools. It was a big deal. Tickets were $150 a piece. I did not go but several people I know did. After living through PANDAS, I already know the blessings of a B minus and even a C minus. She made a very interesting reference in her talk. Now remember, I did not go and this is just what I heard. She was making a reference to how parents now have access to the internet and worry about everything above and beyond what they should. They hear about children being abducted and worry about their children even biking down the street. Their child gets strep and then starts washing their hands more often , and they worry their child will get PANDAS, and extremely rare and controversial disease. She apparently said it sort of jokingly, bad enough that a friend of one of of the other moms who kid is really debilitated now almost walked out. Now this is after I have spent hours trying to educate the teachers of Charlotte and this PhD comes in and makes an off the cuff statement that she has probably no experience about. There have been three children at this school alone, debilitated by this disease. There are probably more, they have just been put on meds and given the wrong diagnosis.

I am not sure what I should do. Part of me thinks, hey she is spreading the word. She is speaking to hundreds of parents and teachers around the country that have never heard of PANDAS and bad press is better than no press. At least the name will get out. The other part of me thinks this is very irresponsible and offensive of her. If I had not searched the internet (just what she told these parents not to do) my kid would still be sick. Maybe when some parent mentions PANDAS to a teacher in the future they will remember this author compared it to as rare as getting abducted and I should pay no attention.

I know the incidence of PANDAS is increasing so rapidly now that like it or not the non-believers will eventually convert but I just think this was a very poor example. She was lucky I was not in the crowd.

[MomWithOCDSon]

Well, I think I'd use her negativity regarding parents and the world wide web for "good" instead of "evil" and double it back on her!

 

I'm assuming this author has a web site . . . most of them do. So, perhaps you look her up and drop her an email; tell her that, unfortunately, you weren't able to attend her talk, in part because a majority of your disposable income must be spent fighting this "rare" disorder! I'd check your hear-say facts with her and find out if she is, indeed, making dismissive comments about PANS, probably out of sheer ignorance. Then, just for good measure, I'd include some links to the best, most recent PANDAS research and responses (that YouTube video of Dr. Seigel regarding the recent outbreak would be at the top of my list, for instance). And then I think I'd leave it at that. Unless . . . . .

 

Should she respond to you and, rather than accepting and being appreciative of the fresh information and wake-up call, insist that she's going to stick with her poor analogy for the remainder of her lecture tour, I'd so what I could to share her contact information, and a few others of us could jump into the frey! Vickie, especially, with her PANDAS Historian capabilities and statistical compilations, might be especially influential!

 

In the case of PANDAS, I don't think I agree that any publicity is good publicity. There's such general reluctance overall, even in major markets (like mine) to accept the validity of this condition, continual references to it as "rare" and "controversial" just tend to stoke the anti-PANDAS fire, I fear.

[LNN]

If you follow up on Nancy's suggestion and get any smug or dismissive reply, do let us know. Between here, the Pandas FB folks, the Maloney FB folks - she'd get quickly acquainted with many of us.

 

I agree with Nancy that this kind of publicity isn't "good" in any way. But the "good" is the fact that the Pandas community is so much larger and better organized than it was a few years ago, that we'd actually be in a position to use a collective voice to stop this kind of denigration and disinformation. So I think it would be good for you or many of us to set her straight. I'm certain a creative writer can come up with more appropriate examples without impacting her message.

[mom md]

Great ideas. I knew my forum friends would help tell me exactly what to do. I will keep you posted.

[tpotter]

If you follow up on Nancy's suggestion and get any smug or dismissive reply, do let us know. Between here, the Pandas FB folks, the Maloney FB folks - she'd get quickly acquainted with many of us.

 

I agree with Nancy that this kind of publicity isn't "good" in any way. But the "good" is the fact that the Pandas community is so much larger and better organized than it was a few years ago, that we'd actually be in a position to use a collective voice to stop this kind of denigration and disinformation. So I think it would be good for you or many of us to set her straight. I'm certain a creative writer can come up with more appropriate examples without impacting her message.

 

 

I totally agree. I would definitely also mention that PANS is much more common than what doctors originally thought, and bring up the point that there are at least 3 at your school alone (that's not "rare" in my book.)

 

You might want to consider getting someone like your husband to edit the email, because no matter how good you are at writing, it's always good to get a 2nd opinion. A friend of mine convinced me to do that when a doctor spoke very rudely to me and my son, and I decided to respond by email (we were so dumbfounded by what he was saying that neither of us could speak for a good 10 minutes afterwards. The doctor actually apologized (didn't do anything else, but at least did apologize for what he had said, and mostly how he had said it.

 

My suspicion is that she had no clue there would be people in the audience with such a "rare" disorder, and is going to be very embarrassed when she gets your email.