Jump to content
ACN Latitudes Forums

What does this quote mean?


Recommended Posts

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?)

Link to comment
Share on other sites

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".

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...