New Saving Sammy update

[lss]

Is it bad that I envisioned this happening....

 

A panda bear with it's mouth open wide saying "ahh" while the words "Got Strep?" is underneath it. God I hope I'm not psychic on this one.

 

Anyway, Got a response from the foundation. Here it is....

 

"Hi Vickie- Thank you for email. We are just getting started and appreciate all of the outreach we can get, and yes, I have been to the pandasnetwork.org and it is a terrific site, chock full of information!

 

The mission of the Pandas Foundation is fairly simply: Advocacy and Support; Research and Education. We very much want to get the word out to as many parents as possible that Strep could be the cause of their child's OCD. More to come on this front.

 

To answer your question about the research underway, it seems like the PandasNetwrok.org site would be a great resource for all of the latest current studies underway. Our immediate focus is to begin to make outreach to people and educate them on the warning signs of PANDAS. As of right now, very few pediatricians, specialists, school nurses, etc. even know about PANDAS, so we have a big task ahead of us.

 

Looking forward to your support and the support of other networks you may know about."

 

 

So, there's the response, but didn't really answer my questions. One question was why Mass General? Are they doing research there? Then I asked where they plan on getting their PANDAS info from. I asked where they plan on getting their info from because of their spokeswoman...Beth Maloney. if she won't let a representation of children with low titers appear on her page because that was not her experience, will she be willing to represent it via the foundation? Or will the foundation take her stance as well to back their spokesperson. I have an odd feeling, they asked Beth who she wanted to be the recipient of the donations. I have no proof of this. Just a feeling. I think someone like Dr Cunningham should be. I mean I still want to know why Mass General!

 

Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

 

 

I am not a supporter of Beth Maloney, but I do think its good that she is bringing the issue of Pandas to the forefront. I don't agree with her ASO titers "test", and I think alot of kids will be left out of the correct diagnosis. My son's titers were only slightly elevated, but only at the beginning of his symptoms.

 

As to why Mass General, I would think its because Dr. Daniel Geller is the Director of the Pediatric OCD Program, and was one of Sammy's drs.

 

Linda

[Kayanne]

Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

 

I have reservations too, but do you think if we all joined right from the beginning, we may have an impact on the direction of this foundation...If we just sit back and wait and see, then it may be difficult to re-direct it when it already has momentum?

 

I'm really glad someone is doing it...I've been looking up 503 c non-profits for a little bit...doesn't seem difficult...Dr. Cunningham & Dr. Leckman need some sort of financial support---so maybe we can join this foundation, but be aggressive in trying to point it in the right direction.

 

Beth Malony is asking us to campaign to Oprah, maybe we could do the same to her, requesting that the funds go to Dr. Cunningham.

 

I believe that Mass General is where Dr. Geller is starting his Augmentin study, so that may be why she wants the funds to go there.

[Iowamom]

IMHO, the foundation is steered and fixed on Mass General and the beliefs of Dr. Geller, an endorser of her book (front jacket). Is there a drug company that makes Augmentin involved?(not just using a generic). I am also concerned about her emphasis on only OCD. Her son's experience isn't the only way PANDAS presents. Don't we all know this. I may be a little harsh in saying, follow the money. Oh, I think we would be welcome at the table, but as far as getting her steered in a more accurate direction--I doubt it. I would have thought if she was propagating misinformation (e.g., low titers) Dr. Geller or some other doc she dealt with would have corrected her --if they believed it to not be accurate.. If "we" were to want to help Cunningham or others Ithink we would be better to start our own--for research from a different angle.

 

Again, just MHO.

[thereishope]

I think their stand is decided already. Perhaps if a couple more contact them and ask for info prior to giving them an "endorsement" we'll get answers.May I was one of the first ones who emailed them, and they are not pros yet at fielding the questions.

 

Perhaps I can be a silent supporter, but I do not want to add numbers to their facebook cause right now.

 

I think Ms. Maloney and any foundation needs the support of us, the PANDAS community, to be sucessful. If they have looked, they will see that these parents do not stop when the word "no" is given to them and we fight. They need that persistence and us doing a lot of work for them to succeed.

 

There was probably a trade off. If you are our spokesperson, we will give donations to whomever you want. Like instead of an income. Because of that they will not easily sway where the money goes.

 

Now the foundation wouldn't make money off of this so I don't see there being an hidden agendy. I believe have good intentions, it's just a matter of what do they stand for (like their stance on titer levels being a diagnostic test) and whether you feel as a supporter that the money is going to a place that will help ALL PANDAS kids. Not in one region. Or worse, you to a totally unrelated reserach area. I cannot campaign for money for them w/o knowing what it is providing.

 

Please keep me updated if you join and good things start to come. I will be watching their facebook page and website, but would like to know if you join, you get personal contacts as well. Also, if you join, perhpas wait to give any money until you find out more.

[ajcire]

I agree Vickie. Did you get a response to your questions yet?

 

 

 

I think their stand is decided already. Perhaps if a couple more contact them and ask for info prior to giving them an "endorsement" we'll get answers.May I was one of the first ones who emailed them, and they are not pros yet at fielding the questions.

 

Perhaps I can be a silent supporter, but I do not want to add numbers to their facebook cause right now.

 

I think Ms. Maloney and any foundation needs the support of us, the PANDAS community, to be sucessful. If they have looked, they will see that these parents do not stop when the word "no" is given to them and we fight. They need that persistence and us doing a lot of work for them to succeed.

 

There was probably a trade off. If you are our spokesperson, we will give donations to whomever you want. Like instead of an income. Because of that they will not easily sway where the money goes.

 

Now the foundation wouldn't make money off of this so I don't see there being an hidden agendy. I believe have good intentions, it's just a matter of what do they stand for (like their stance on titer levels being a diagnostic test) and whether you feel as a supporter that the money is going to a place that will help ALL PANDAS kids. Not in one region. Or worse, you to a totally unrelated reserach area. I cannot campaign for money for them w/o knowing what it is providing.

 

Please keep me updated if you join and good things start to come. I will be watching their facebook page and website, but would like to know if you join, you get personal contacts as well. Also, if you join, perhpas wait to give any money until you find out more.

[Ellen]

Kayanne, I think is an excellent point that you make. If enough of us join and ask questions before we make any donations we might be able to have an impact on the direction of this organization. Right now, when things are just getting off the ground, may be the best time to act, suggest, offer resources and information, and try to persuade. And the more of us involved, the better. I'm thinking that we may be able to accomplish a lot more in terms of directing the research and challenging myths about PANDAS if we are working from the inside rather than just waiting and watching. What do others think about this?

 

Ellen

 

 

Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

 

I have reservations too, but do you think if we all joined right from the beginning, we may have an impact on the direction of this foundation...If we just sit back and wait and see, then it may be difficult to re-direct it when it already has momentum?

 

I'm really glad someone is doing it...I've been looking up 503 c non-profits for a little bit...doesn't seem difficult...Dr. Cunningham & Dr. Leckman need some sort of financial support---so maybe we can join this foundation, but be aggressive in trying to point it in the right direction.

 

Beth Malony is asking us to campaign to Oprah, maybe we could do the same to her, requesting that the funds go to Dr. Cunningham.

 

I believe that Mass General is where Dr. Geller is starting his Augmentin study, so that may be why she wants the funds to go there.

[thereishope]

They responded. I quoted it above somewhere. They didn't answer my questions though.

 

 

I agree Vickie. Did you get a response to your questions yet?

[thereishope]

So should we agree to do this in numbers? Meaning, we all join, don't join? Personally, I won't recruit any family or friends as of yet. I want to know more of what I am backing.

 

Michele told me that they are doing an Augmentin/OCD study at Mass General. I guess it took 8 years or so to get it going after seeing the success of Sammy, but it's something. Does anyone know if Dr Geller knows the most up to date info on PANDAS?

 

I guess if we are not happy with how the foundation goes, we can just leave it, right?

 

 

 

Kayanne, I think is an excellent point that you make. If enough of us join and ask questions before we make any donations we might be able to have an impact on the direction of this organization. Right now, when things are just getting off the ground, may be the best time to act, suggest, offer resources and information, and try to persuade. And the more of us involved, the better. I'm thinking that we may be able to accomplish a lot more in terms of directing the research and challenging myths about PANDAS if we are working from the inside rather than just waiting and watching. What do others think about this?

 

Ellen

[ajcire]

Ack, Vickie, not sure how I missed that.. I think I skipped that whole page. Yeah, they sure did avoid your questions. I personally will not join anything until I know what information they are spreading. I am also concerned that they are only focused on ocd. That is not the main component for my ds and I am guessing that it is not for many others.

 

The problem is not really the lack of doctors having heard about PANDAS... it's the lack of doctors wanting to accept that it is real. I mean, every doctor I spoke to had heard of it and already had a strong opinion formed on it.

 

 

I also know that if you have the mentality that one vote doesn't matter than you can't make a change but I feel like this is such a small group of people here. I don't know that we here could make a dent in anything to do with that foundation. She will have a HUGE following of people who saw her on t.v and then read the book and just take all that in as the end all be all of PANDAS.

 

When I first saw her book was out I was so hoping it would be something I could then share with people close to me to help them understand what my concerns are with my son but I quickly saw that I could not share it with anyone (except my mother) because they would look at my son and think it was clearly not PANDAS for him because he is functioning fine and not horribly OCD. Don't get me wrong, of course her book would not be about a case like my son and I get that.. and I really think she did a great thing sharing her story and I am sure that by doing so she has already helped many many families but if that is the only form of PANDAS that will be getting the attention it is only going to make it harder for those with kids who are not like Sammy.

 

 

 

They responded. I quoted it above somewhere. They didn't answer my questions though.

 

 

I agree Vickie. Did you get a response to your questions yet?

[faith]

erica,

I feel the same way in that my son has all these issues, but they are mostly mine to see, and he presents normally to the casual observer, (except for his vocal tics if they hear them).

 

that said, you could explain that this is a "spectrum disorder", not all will be severe. just like autism, some are sever and some are mildly autistic, but nevertheless......so you are trying to catch it early before it does get like that.

 

 

Faith

[Worried_Dad]

Dr. Geller is at Mass General, and he was one of Sammy Maloney's "main docs." I believe somebody posted elswhere that he / Mass General was initiating a study of treating PANDAS with high-dose augmentin?

 

 

Were Sammy's Dr's or any of the Dr's in her book out of Mass General?

I hope they will get the information and education out there to Dr's and parents. We just want it to be up to date information since Sammy was sick awhile ago and research has changed and more is known about PANDAS since his illness in 2001. Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

[thereishope]

For those who have submitted a photo to Beth....

 

Now PANDAS Foundation is taking control of the photos and taking the plea to Oprah. So, I am thinking of emailing them and telling them to delete my photo.

 

What's your opinion on this...

[Worried_Dad]

Personally, I think we should all do anything we can to support anyone's good-faith efforts to "spread the word" about PANDAS. A grassroots movement may be our best shot at convincing skeptics in the medical community to at least reconsider their positions... or it might make them a bit nervous about ignoring sick children with these symptoms for fear of bad press.

 

Maybe, as things progress, this forum and pandasnetwork.org can help shape Beth Maloney's perception of the diversity of PANDAS stories. Maybe she'll pave the way for others to share their stories, too.

 

I just know that I'm fed up with the way our healthcare system treats these children. We shouldn't have to search frantically for months or years to find a sympathetic doc. We shouldn't have to go broke paying up-front for IVIG or PEX. Whatever is done to raise awareness seems like a win at this point!

 

 

For those who have submitted a photo to Beth....

 

Now PANDAS Foundation is taking control of the photos and taking the plea to Oprah. So, I am thinking of emailing them and telling them to delete my photo.

 

What's your opinion on this...

[peglem]

My experience was that the reason my daughter was dismissed by doctors was precisely because she didn't have those glorious ASO/AntiDnase titers....so can you see where I would have trouble supporting this view of PANDAS? I agree, we need the publicity and exposure...but I really hate to reinforce the very notion that denied treatment for my daughter.

[Worried_Dad]

Makes total sense. Honestly, I'm just so darned grateful right now for the progress our son is making on the "Saving Sammy" dose of augmentin that I'm not very objective. And unfortunately, I think most docs can come up with other reasons to deny the PANDAS diagnosis. Our son had rising ASO titers after exacerbations... and an abnormal PET scan... and the Cunningham CAM K result... and they still wouldn't accept the diagnosis.

 

I guess we keep sharing our stories with Beth Maloney and hope that she starts to appreciate the full scope of our kids' experiences? I see how tough a choice this can be....

 

 

My experience was that the reason my daughter was dismissed by doctors was precisely because she didn't have those glorious ASO/AntiDnase titers....so can you see where I would have trouble supporting this view of PANDAS? I agree, we need the publicity and exposure...but I really hate to reinforce the very notion that denied treatment for my daughter.