A draft of a flow chart on PANDAS

[Buster]

Ah, now that is really good. Thank you. Only suggestion would be to add Lupus (and possibly Celiac) - both of which have know neurological symptoms similar to PANDAS onset. This is a great chart. Are you leaving it up on this URL? I'd love to share it with other boards if you are done now. Thanks -

 

I can do that -- why do you think Celiac has symptoms similar to PANDAS. I wasn't aware that it had either a tic disorder or OCD.

 

Buster

[lboll]

If I'm following this right - I end up at the big red "STOP" box of non-strep trigger, with no where to go but considering the Cam Kinase study. So I have questions about this. What about strep being the original trigger through hindsight, but not the current trigger for exacerbation. Should there be a further path to follow if the Cam Kinase scores end up high? And what about the possibility of intercellular strep that isnt detected by swabs or ASO tests? Should there be a box about this to try 2 weeks of Zith and see if there is positive response?

 

I had a similar question - some things would be different on this diagram depending on whether you're talking about a first/initial episode or subsequent ones. Somehow, we need to get doctors to understand that the diagnostic criteria and the steps they might use to rule in or rule out a Pandas dx would be a little different if you're looking at a first event vs. a retrospective look at evidence. But the more complex this diagram gets, the less likely it is that a doctor would consider it (imo).

 

My son is now a "canary" - so sensitive that he has a Pandas reaction when his sister is sick but he is not. The Pandas experts get this. But if I had to walk into a pediatrician's office and start from scratch, I'd be up a creek without a paddle. Unfortunately, there isn't much research out there to "prove" the canary reaction is part of Pandas. So if this is something anyone would like to use with their local doctor, it might make the whole flow chart lose credibility if we start adding boxes that aren't supported by anything other than anecdotal evidence.

 

Looking at this, you start to understand why so few doctors get or want to get this disease. It's not as simple as "is bone broken?" Yes ---> set bone and place cast. No easy answers with this disease...

I am one of those parents who is starting at the beginning. Just last week our doctor put my son on Augmentin. I can't tell you how pleased I am with this flowchart. This will help my doctor so much as we live overseas and he is new to all of this as well. Thank you!!!!

[Buster]

Restarted thread with cleaned up version here: http://www.latitudes.org/forums/index.php?showtopic=6688