The White Paper is Released!

[nevergiveup]

Cans people were well aware of Swedos white paper a long time ago. Not sure why they preempted it. Again politics, territories,status of expertise etc.... Actually the CANS paper was published by many docs whom have writen Pandas was not real, so it is all strange and political. I think a little CYA actually. If u talk with the docs at thse mtgs u will hear how territorial and political it all is. Medicine is Big business.

[Missbusy1]

I am very frustrated with the white paper and it will only make things worse for presenting my sons case. The doctors in my town dont even want to discuss pandas or have an educated discussion regarding pandas.. His major symptoms are tics, urinary issues, depression during exasperation and anxiety. Only mild OCD. I am infuriated knowing that he won't qualify under these terms and will always have to pay out of pocket for his medical treatment. His quality of life is too important for me to just label him as TS and put him on serious medications without solving the problem. Why do I bother taking him to a neurologist when they don't run any lab work yet will diagnose in such a short visit? My opinion of dr. Swedo at the present is not as positive as the rest. According to the white paper, I should just move on to the tics/tourettes forum. Not happy and not willing to wait to find out if she really is an advocate for my son that is lacking the major OCD symptom.

I apologize if this seems too negative but the whole process of dealing with multiple doubting doctors has me a bit discouraged.

[thenmama]

nevergiveup-- I think you misunderstand me. If you see my post on the first page of this discussion thread you'll notice that I'm not naive regarding the white paper and its goals, and I am looking at it objectively, not emotionally. I'm responding, not reacting. I'm well aware of the paper's intended purpose, and professionally, I'm a writer and academic so I'm pretty well versed in things like context, tone, audience, the conventions of publishing, etc. -- as well as the way politics operate in any given field. My professional work also involves social change/activism, so I may analyze and critique things through those lenses when they are intended to effect change in the mainstream. Anything that involves people is, by nature, political, so I think many of us expected politics to be involved in this. And I think many of us actually can imagine the extent to which politics are involved-- speaking for myself, I know I can.

 

So, just to clarify, my critique of the paper is not because my feelings are hurt by Swedo's tone (which I was trying to point out was appropriate for the paper, but may have been better if accompanied by a more personal, encouraging note to the PANDAS community if she really wanted to maintain its support), nor am I upset because my own children are excluded by the new criteria (they're not), nor is it because I'm just not capable of understanding the nature of what's involved here and the politics that surround it. I am not, as you seem to assume, left wanting more from this white paper because I wasn't aware as you were that politics might be involved in funded research, medicine, and government agencies.

 

I just don't think it was a very good paper or strategically smart, at least not on the visible plane. Sure, she took TS out of the equation-- but in doing so she also sent the TS camp the message "You win." That could very well backfire down the road-- they may step out of the way for now, but if her work starts to encroach on theirs again they'll just use her own publication against her. Based on the record and what I've seen, I'm just not convinced that Swedo's politically savvy--but I hope she'll prove me wrong.

 

I guess I'm not convinced by your defense of the paper, either. Can you explain how treating with SSRIs and anti-dop drugs is "supportive of public policy" and how antibiotics had to be excluded because of public policy (and which public policies those are)? I also question if as you suggest, Swedo only wrote this paper because parents were expressing to her how difficult it was to get care, in what part of the paper did she address that and what was it in the paper that was intended to make that easier? Your rationale and claims don't seem to be supported by, and may even conflict with, the paper itself (including the paper's raison d'etre). I can see you feel strongly about this and really believe in it, but when it comes to addressing the actual content or substance of it, you're equivocating-- I think maybe because you are so invested in your position and would like others to see it as you do.

 

I was bothered by your post in response to mine because I thought it wasn't necessary or appropriate for you to suggest that because my take on this differs from yours I must not understand it. But, I really don't think you intended your post to be condescending. I believe you were trying to be positive and supportive, and were trying to rally others who may not be feeling the Swedo love right now to remain hopeful for our children. But you know, we don't have to agree in order to do that. I always welcome challenges to my opinions and what I write--it spurs me to consider differing viewpoints and is an opportunity for growth. I think dissenting opinions, respectful disagreement, and thoughtful debate are healthy and necessary in a community. I see no reason why disagreeing would preclude us from playing on the same team when it comes to advocacy and support for those affected by PANDAS. Let's just agree to disagree and foster mutual respect within this amazing community of ours as we forge ahead with the shared purpose of helping our children and others like them.

Edited February 22, 2012 by thenmama

[Worried_Dad]

I'm a writer and academic so I'm pretty well versed in things like context, tone, audience, the conventions of publishing, etc. -- as well as the way politics operate in any given field. My professional work also involves social change/activism, so I may analyze and critique things through those lenses when they are intended to effect change in the mainstream.

 

Wow - those are excellent credentials for evaluating these research papers. I think you and Buster should collaborate on a "PANDAS white paper." That's one I know I could support without reservation!

[nevergiveup]

Mama and Buster cannot write the white paper, as good as it may be, they are not credible researchers on pandas. Not to take away from their expertise, or knowledge of pandas, lots of us here especially buster know more than most of the "experts" but the facts are Swedo has been fighting for us, for over 12 years, and I must say that I know she is on our side, and on our childrens side. Thats all, could the white paper say more, sure it could of, but I trust that this paper said what it needed to or what had to be said. I also trust once the ivig study is complete and cunningham tests are available more will be published. In the mean time, if your local neurologist does not believe in pandas or if you feel your sons tics were caused by a pandas attack please go see an expert in pandas. We all need to continue to fight for proper care, to fight to get this disease, its symptoms and treatments understood but for the immediate time period getting the right care for our children is out there and waiting around for our cynical large medical system to get on board could take years. I am not willing nor able to attack swedos paper at this venture, I wish it had said more, and I feel its ok for many here to say they wish it had said more. But because of parents request, parents collecting data on the kids, parents pushing for docs to reach out to swedo, she and the NIMH resurrected this study and collected doctors together, all the naysayers included and fought to help them see this disease exists. This paper allows all neurologists to continue to treat ocd and tics with the same drugs, with or without the diagnosis of pandas. Nothing really has changed except pandas now is real. I am just happy for that right now! Its a start in the right direction. I know families in my neighborhood whom docs have told them pandas is not real and the families have stopped searching for treatment. Now the docs will say its "rare" and maybe some of these moms will google us now and find better care.

 

oh and as for public policy, I was referring to the cost of medicine, ivig and pex. And as for abx, our public policy is to limit them to prevent super bugs. Oh and Mama, you are a very good writer, never was I trying to say you did not understand the paper. I was actually talking to all on the forum about my opinions of the paper and why I thought it was important, and the history behind some of it. I like to be more of a big thinker, not really targeting anyone in particular, or any one persons opinion. Just want the kids to find care ASAP, I waited around thinking the genious doc at my childrens hospital would come around and see the light, and all the while I was letting my child get worse.

[Worried_Dad]

Mama and Buster cannot write the white paper, as good as it may be, they are not credible researchers on pandas. Not to take away from their expertise, or knowledge of pandas, lots of us here especially buster know more than most of the "experts" but the facts are Swedo has been fighting for us, for over 12 years, and I must say that I know she is on our side, and on our childrens side. Thats all, could the white paper say more, sure it could of, but I trust that this paper said what it needed to or what had to be said. I also trust once the ivig study is complete and cunningham tests are available more will be published. In the mean time, if your local neurologist does not believe in pandas or if you feel your sons tics were caused by a pandas attack please go see an expert in pandas. We all need to continue to fight for proper care, to fight to get this disease, its symptoms and treatments understood but for the immediate time period getting the right care for our children is out there and waiting around for our cynical large medical system to get on board could take years. I am not willing nor able to attack swedos paper at this venture, I wish it had said more, and I feel its ok for many here to say they wish it had said more. But because of parents request, parents collecting data on the kids, parents pushing for docs to reach out to swedo, she and the NIMH resurrected this study and collected doctors together, all the naysayers included and fought to help them see this disease exists. This paper allows all neurologists to continue to treat ocd and tics with the same drugs, with or without the diagnosis of pandas. Nothing really has changed except pandas now is real. I am just happy for that right now! Its a start in the right direction. I know families in my neighborhood whom docs have told them pandas is not real and the families have stopped searching for treatment. Now the docs will say its "rare" and maybe some of these moms will google us now and find better care.

 

oh and as for public policy, I was referring to the cost of medicine, ivig and pex. And as for abx, our public policy is to limit them to prevent super bugs. Oh and Mama, you are a very good writer, never was I trying to say you did not understand the paper. I was actually talking to all on the forum about my opinions of the paper and why I thought it was important, and the history behind some of it. I like to be more of a big thinker, not really targeting anyone in particular, or any one persons opinion. Just want the kids to find care ASAP, I waited around thinking the genious doc at my childrens hospital would come around and see the light, and all the while I was letting my child get worse.

 

Yeah, I was trying to be funny. There's a reason I haven't landed that special on Comedy Central yet, eh?

 

But I do sincerely believe that the info shared by the "scientifically minded" on this web site has educated me more thoroughly than any other source. So maybe a "forum paper" is a better fit?

[nevergiveup]

Gosh.... I knew u were kidding! Forum is the best though. I think lots a docs secretly come on forum to get informed!