New Saving Sammy update

[Suzan]

EaMom,

I am also extremely frustrated with Dr. Swedo and the NIMH web site. I posted this before, but back in Feb. Dr. Swedo told me they were "in the process of updating" the web site and made it sound like it was to be done soon. Nine months later is still isn't.

 

I cannot even imagine the number of physicians and parents, searching for answers, who read the info on that website. It tells them No antibiotics, need to have high titers.

 

Now we have Beth Maloney as the PANDAS "spokesperson" telling the world that you need high titers. This misinformation has got to stop and stop immediately. I have just had it with fighting this fight. It's great that Beth wrote this book, but it stinks that she is making things worse, and I do believe it will make things worse if she continues to maintain this BALONEY about titers.

 

Colleen

 

So, what should we do? Is there a way we can get organized to help change this? I'm feeling overwhelmed with it all. I feel like I can't make a difference but I know I can somehow.

[colleenrn]

Can we ALL just directly email Beth and explain individually why she must change her stance on titers? If 50 people email her (not facebook in case she deletes) then maybe we will have an impact?

 

Colleen

[faith]

I am thinking the medical community may be relenting to at least her version of the experience, they have to now since the story is out and the treatment for her son is obviously confirmed and a success.

 

So, what I think is that she can't muddy those waters right now, or it might just confuse the whole issue. SO, instead of trying to keep putting it out there that low titers are not necessarily a 'rule out' for this PANDAS, it should be suggested that ..."if a parent thinks their child fits the clinical picture DESPITE low titers, than seeing a specialist or expert in PANDAS should be sought for additional testing and consulting, for sometimes those results could be skewed for reasons unknown"......something like that? it may be all in the wording or how you present. I think she doesn't want to be contradicted.

 

You may be beating a dead horse here.

 

Faith

[EAMom]

There's still 1 lattitudes link in the comments under her post about Harvey Singer. I don't know if she just didn't notice it?

[thereishope]

Didn't the Harvey Singer post appear prior to negative publicity on this forum? She probably didn't think to look at old comments. It would kind of get lost in the page over time anyway. Okay, but now I have to watch the pages and see if that additional link gets deleted.

 

I think she didn't realized that there was a discussion topic until yesterday when she went to post her dr list. It wasn't until that got posted, did she delete the otehrs.

 

You know, she mustn't be that busy with the book if she has time to play fan page police. (Sorry I just couldn't resist saying that).

 

Let me add my clause now....

 

I do think she is helping some people. I don't think she's a bad person. She just not handling things correctly. She needed to think a little more before acting.

[Worried_Dad]

I agree, Faith. Beth Maloney - and other parents who have come forward to publicly share their children's PANDAS stories - are shining a light on this illness at a time when that's desperately needed. It at least forces the medical community to acknowledge the accumulating body of "anecdotal evidence" that PANDAS is real, it's autoimmune in nature, and there are ways to treat it to relieve the intense suffering of kids afflicted with it.

 

I completely understand and appreciate the frustration of folks on this forum who have been stonewalled by healthcare professionals because of misconceptions, outdated or partial understanding, etc. I can relate. We've spent a full year searching for any local doctor who would agree to help our son and been told again and again (based on utterly bogus reasoning) why our son did not have PANDAS... or why it didn't matter if he did, because nothing could be done about it.

 

But Saving Sammy is generating much needed attention, which should benefit all of our children if we can capitalize on it. I just believe we (Beth Maloney, the other mothers who've recently publicized their children's PANDAS stories, and all of us here) have much more common cause than cause for disagreement. My fear is that - if we don't find a way to unify our efforts - it will weaken the message in general.

 

I don't honestly know how best to engage Beth Maloney to help her see how much more varied and complex PANDAS experiences can be vs. what she experienced with her son. Just feels like we need to find a way to form an alliance between ACN, the awesome work that Diana P has done with pandasnetwork.org, and the efforts that Beth M is making.

 

Another example of my fears and frustration with PANDAS perceptions in the medical community. We live in the Midwest, where Mayo Clinic is the unquestioned "gold standard" for healthcare excellence. Everybody in our area has asked us over and over, "why aren't you taking your son there?" So we actually started down the path of scheduling an appointment at Mayo. When the scheduling nurse called, she told me on the phone that the main doc we would be seeing there - a ped neurologist - did not believe PANDAS was a "useful diagnosis" and would only address tics and headaches. I felt my heart sinking in my chest. If some of the most elite experts in the medical world are still adopting this position, how many suffering children will find no path to relief?

 

Attitudes like that - from the "medical experts" who seem to keep ignoring real-world experiences of real children - are the enemy. I know that we need to find a way to get Beth M on board with the latest PANDAS info on titers, immunomodulatory therapies, the Cunningham test, etc. I know we need to point out inaccuracies in her message. Her PANDAS experience is 7 years old, and a lot has been learned since then. But that whole "united we stand, divided we fall" thing just haunts me.

 

 

I am thinking the medical community may be relenting to at least her version of the experience, they have to now since the story is out and the treatment for her son is obviously confirmed and a success.

 

So, what I think is that she can't muddy those waters right now, or it might just confuse the whole issue. SO, instead of trying to keep putting it out there that low titers are not necessarily a 'rule out' for this PANDAS, it should be suggested that ..."if a parent thinks their child fits the clinical picture DESPITE low titers, than seeing a specialist or expert in PANDAS should be sought for additional testing and consulting, for sometimes those results could be skewed for reasons unknown"......something like that? it may be all in the wording or how you present. I think she doesn't want to be contradicted.

 

You may be beating a dead horse here.

 

Faith

[dcmom]

I completely agree with worrieddad.

 

Beth has told her story. It will help lots of kids- it will not help everyone. She really can't speak for us and our stories(and she is an attorney so by nature will be more conservative than we are)- and has to be careful to remain credible. We have to continue to do our part by reaching out to everyone we can. Working together is the only way...

[thereishope]

I don't want to make it sound I am part of a hate campaign against her. If she does something, I feel comfortable supporting, I still plan on doing so. Maybe after the "newness" of having a book goes away, she will be more open to hearing others.

[Ellen]

Worried Dad, Everything you say about needing unity makes sense, and I agree that it might be best to try to work with Beth and try to persuade her to be open to learning about the latest and most up to date info on PANDAS. I know that she has been a big help to you in your treatment of your son. Have you considered writing to her to thank her and update her on him but also include some of this other info on the titers, the latest therapies, and the Cunningham test?

I am really happy that Saving Sammy is out there and it has helped many people. I am glad that high dose Augmentin has been working well for so many people. This is something I wish we could have tried for my son but he is allergic to it. If Beth's son had this allergy, she might have had to go down another path as we have. So the approach of just prescribing high dose Augumentin is great for those who can take it. Others like my son do not have that option, and so I think the PANDAS Foundation has a responsibility to make people aware of other antibiotics such as zithromax and other treatments such as IVIG and PEX. I hope that as the spokesperson, she will not shy away from communicating this information. My opinion is we need to keep trying to inform and communicate with her and others in the foundation.

 

Ellen

 

I agree, Faith. Beth Maloney - and other parents who have come forward to publicly share their children's PANDAS stories - are shining a light on this illness at a time when that's desperately needed. It at least forces the medical community to acknowledge the accumulating body of "anecdotal evidence" that PANDAS is real, it's autoimmune in nature, and there are ways to treat it to relieve the intense suffering of kids afflicted with it.

 

I completely understand and appreciate the frustration of folks on this forum who have been stonewalled by healthcare professionals because of misconceptions, outdated or partial understanding, etc. I can relate. We've spent a full year searching for any local doctor who would agree to help our son and been told again and again (based on utterly bogus reasoning) why our son did not have PANDAS... or why it didn't matter if he did, because nothing could be done about it.

 

But Saving Sammy is generating much needed attention, which should benefit all of our children if we can capitalize on it. I just believe we (Beth Maloney, the other mothers who've recently publicized their children's PANDAS stories, and all of us here) have much more common cause than cause for disagreement. My fear is that - if we don't find a way to unify our efforts - it will weaken the message in general.

 

I don't honestly know how best to engage Beth Maloney to help her see how much more varied and complex PANDAS experiences can be vs. what she experienced with her son. Just feels like we need to find a way to form an alliance between ACN, the awesome work that Diana P has done with pandasnetwork.org, and the efforts that Beth M is making.

 

Another example of my fears and frustration with PANDAS perceptions in the medical community. We live in the Midwest, where Mayo Clinic is the unquestioned "gold standard" for healthcare excellence. Everybody in our area has asked us over and over, "why aren't you taking your son there?" So we actually started down the path of scheduling an appointment at Mayo. When the scheduling nurse called, she told me on the phone that the main doc we would be seeing there - a ped neurologist - did not believe PANDAS was a "useful diagnosis" and would only address tics and headaches. I felt my heart sinking in my chest. If some of the most elite experts in the medical world are still adopting this position, how many suffering children will find no path to relief?

 

Attitudes like that - from the "medical experts" who seem to keep ignoring real-world experiences of real children - are the enemy. I know that we need to find a way to get Beth M on board with the latest PANDAS info on titers, immunomodulatory therapies, the Cunningham test, etc. I know we need to point out inaccuracies in her message. Her PANDAS experience is 7 years old, and a lot has been learned since then. But that whole "united we stand, divided we fall" thing just haunts me.

 

 

I am thinking the medical community may be relenting to at least her version of the experience, they have to now since the story is out and the treatment for her son is obviously confirmed and a success.

 

So, what I think is that she can't muddy those waters right now, or it might just confuse the whole issue. SO, instead of trying to keep putting it out there that low titers are not necessarily a 'rule out' for this PANDAS, it should be suggested that ..."if a parent thinks their child fits the clinical picture DESPITE low titers, than seeing a specialist or expert in PANDAS should be sought for additional testing and consulting, for sometimes those results could be skewed for reasons unknown"......something like that? it may be all in the wording or how you present. I think she doesn't want to be contradicted.

 

You may be beating a dead horse here.

 

Faith

[Kayanne]

I will agree that Beth Maloney has brought the subject of Pandas to the forefront, however I disagree with her objective. Diana P. tried to reach out to her BEFORE her book came out, to try and include other information in her book, references, doctors, the fact that not everyone has high titers, Beth Maloney refused.

 

Diana tried to reach out to her again after her book, and again she got nowhere with Beth Maloney. My concern is that alot of kids will be ruled out of a diagnosis of Pandas, based on her book. She may have agreed to be the spokesperson for the Panda Foundation,however she did not initiate it, she is not even on the board of this foundation (as of right now).

 

Her push to get on Oprah seems to be for her benefit not necessarily to get the kids help. I agree that there are many "versions" of Pandas, we all have children with similar symptoms, and yet some symptoms are also different. OCD is only one sympom of Pandas, not the only one.

 

Worried Dad,

 

I am so happy that the higher dose of augmentin is working for you!

 

Linda

 

How can we find out who is on the board? Has anyone contacted someone else involved in the foundation? I'm going to email them right now to ask who is on the board.

 

I am also worried about a a public rift with the PANDAS issue...I am afraid that only her version and the NIMH version of PANDAS will be accepted, and all of our kids and us as parents will be painted in a negative light--kept on the fringe...it already happening....we just don't need more of it.

[Worried_Dad]

That's a great idea, Ellen! I've e-mailed her a few times to thank her and let her know about our son's progress on augmentin - and I mentioned our experience with IVIG - but I never went into detail.

 

I'll give this a shot. Thanks for the suggestion!

 

 

Worried Dad, Everything you say about needing unity makes sense, and I agree that it might be best to try to work with Beth and try to persuade her to be open to learning about the latest and most up to date info on PANDAS. I know that she has been a big help to you in your treatment of your son. Have you considered writing to her to thank her and update her on him but also include some of this other info on the titers, the latest therapies, and the Cunningham test?

I am really happy that Saving Sammy is out there and it has helped many people. I am glad that high dose Augmentin has been working well for so many people. This is something I wish we could have tried for my son but he is allergic to it. If Beth's son had this allergy, she might have had to go down another path as we have. So the approach of just prescribing high dose Augumentin is great for those who can take it. Others like my son do not have that option, and so I think the PANDAS Foundation has a responsibility to make people aware of other antibiotics such as zithromax and other treatments such as IVIG and PEX. I hope that as the spokesperson, she will not shy away from communicating this information. My opinion is we need to keep trying to inform and communicate with her and others in the foundation.

 

Ellen