What does this quote mean?

[momslove]

Called a major medical center about scheduling an appointment with a doctor. Was told they "don't support a PANDAS diagnosis, but will treat the symptoms". I tried to ask if that meant they did not see that infection could be related to the symptoms. She basically repeated what she was told to tell patients who call with that diagnosis. What does that really mean? (I was calling to see a doctor mentioned in the fire storm article that was just recently posted on this forum so I know the doctor looks at AE. Is it a potato-putahto thing?)

[JakeTyler]

Major Medical Center = Children's Hospital of Boston, Philly, Pittsburgh etc.. Cleveland Clinic or similar. None of them support a PANDAS diagnosis. "Treating the symptoms" typically means shuffling the kids off to see a psychiatrist to "treat the symptonms".

 

In other words, RUN AWAY!

[momslove]

But the NYT article about autoimmune firestorm uses the word "CURE" when they mention this facility... That's what I want!

[JakeTyler]

But the NYT article about autoimmune firestorm uses the word "CURE" when they mention this facility... That's what I want!

Obviously we all want a cure, I don't believe one currently exists.

 

The immunotherapy they mention (steroids, IVIG, antibiotics, and plasmapheresis) have all shown to help with flares but none are a lifetime "cure".

[LNN]

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

[pr40]

indeed, make sure to ask what treatment they provide BEFORE you go in.

[Hrosenkrantz]

I think in some ways it might be a potatoes/pataatoes thing, like you say...

 

It does seem there are some major medical centers that support autoimmunity as the cause for this. This belief is not the same as "we must eradicate the infection" which seems to be part of pandas treatment. But it's also not " your kid needs to be in a psych ward" as was suggested above.

 

The point is -- these medical centers will treat w the autoimmune therapies mentioned in that nytimes story posted on another thread. Many of these treatments -- pex, ivig, steroids -- are also treatments used by pandas doctors. So yes, it is potatoes/pooootatos. --same treatments mostly, but different names.

 

One key difference --above poster is right that the autoimmune doctors don't really buy into abx, while I believe sweedo sees abx as central to the treatment protocol.

 

As a side note -- pandas is not really embraced or accepted by insurance companies, while the autoimmune conditions are to a larger extent. I'm not sure if that prompts the kind of response you got from the health facility you called

[searching_for_help]

I think we should all print out this page from the Pandas Physician's Network, and take it in to all docs too lazy or arrogant to help our children:

 

https://www.pandasppn.org/committee-members/

 

When nay-sayers start there BS, we can show them that docs from Harvard, Stanford, Columbia, Yale, etc. are on board because they've taken the time to learn about PANDAS, instead of being lazy and not bothering to look into it, because that's all it boils down to. I'm beyond disgusted with the medical community.

[EAMom]

"don't support a PANDAS diagnosis, but will treat the symptoms"
Hmmm...that sounds like they will use psych drugs and anti-tic drugs. Maybe ask, what do they treat the symptoms with?

[qannie47]

If they "don't support a Pandas diagnosis", and you feel that this is what your child has, it makes sense that this is not the place where you will find the necessary help.