A PANDAS FAQ

[MichaelTampa]

I think this is going to be very useful for so many newcomers, and even those who have been around a little while but have trouble keeping all this technical stuff straight!

 

There is another whole category that could be put there, if it makes sense. Adults.

- Can someone get PANDAS as an adult?

- What happens when a PANDAS child goes through puberty (will it get better / worse / ...)?

- Are treatments for PANDAS less effective after puberty?

- I am an adult and wasn't diagnosed with PANDAS as a child. Could I have PANDAS? (Looks like yes)

 

Not sure what else, but I know these were some of the questions I had. I see from Dr. K.'s website he thinks that treatments may not work as well after puberty. Not sure if there is enough experience here to address these questions too much, but thought I'd ask/suggest.

 

Michael

[matis_mom]

This is looking better all the time!

 

I really like the "sub-titles", it makes it a lot easier to find things.

 

I would add a caution not to use ibuprofen while on steroids, as that was the reply I got from several parents (stomach ulcers?)

 

Also, I would put more emphasis on clearing strep from the house. There is a question there about checking carriers to see if they cleared, but I think it would be better if before that we put another question along the lines of

 

Q: What else should I do to keep my PANDAS child strep-free?

A: It is very important to test everyone in the household. Many families have found that there is a someone else in the family with strep during an exacerbation, or that they have an asymptomatic carrier who keeps infecting others. So it becomes necessary to check all family members (not just children) for strep by means of both a rapid test and a 72 culture and treat accordingly.

 

(then this question should be followed by the one that talks about going back to check they cleared it).

 

Maybe it would also be useful to include what protocols have been useful for clearing carriers, as the choice of abxs seems to be different than what is use for the PANDAS child. Perhaps this whole thing could become a separate "useful topic" called "Clearing the Carrier" or "How to keep strep out of the house!" And we could include other measures like changing toothbrushes, linens, treating pets, etc (well, we don't want to freak people out!)

 

I am sure the "answers" can be enhanced by the collective wisdom on this forum, this is just what I could come up with right now...

 

This document is awesome for new people and I think it will be great for all of us to have one single place to look for answers! Thanks for putting this together.

 

Isabel

(who is very focused on strep erradication right now )

[Buster]

I'm good with that. It's nice and neutral. There really may be something here regarding the pneumonococcal serotypes but I think we don't have enough yet to make it into the FAQ, yet.

 

I feel as thought the research at this point indicates that the disease is an abberent response to Group A Beta-Hemolytic strep and we don't know what part vaccinations may have contributed to a malfunctioning immune system or a leaky BBB. We also don't know if injecting multiple strains of strep may have contributed to a "change" in the strep, or the bodies response or lack of response.

 

I don't feel that the Q&A page is the place to discuss that matter either. What do you think about skipping the "cause" question and simply saying:

 

 

Q. Will a vaccine trigger an exacerbation?

 

A. Possibly. There are several parent reports of onset or worsening of symptoms within a short period of time after recieving vaccinations. This is a very controversial area and talking with an immunologist with experience with MS, ARF or Sydenham Chorea is probably the best recommendation here.

[peglem]

But, we don't want it too overwhelming, either. Maybe put a statement at the top or bottom directing people to post to the forum if they have further questions or need clarification about anything.

[Buster]

There is another whole category that could be put there, if it makes sense. Adults.

- Can someone get PANDAS as an adult?

- What happens when a PANDAS child goes through puberty (will it get better / worse / ...)?

- Are treatments for PANDAS less effective after puberty?

- I am an adult and wasn't diagnosed with PANDAS as a child. Could I have PANDAS? (Looks like yes)

 

Not sure what else, but I know these were some of the questions I had. I see from Dr. K.'s website he thinks that treatments may not work as well after puberty. Not sure if there is enough experience here to address these questions too much, but thought I'd ask/suggest.

The questions are good ones but I don't think we know a lot about the answers given the experience so far on the forum. Let me see if I can reword some of the questions into things we can answer. What about starting a new thread on what you've found out so far ?

[Buster]

I'm thinking it is time to pull this out to a published thread at this point. Any other major missing sections/edits before doing so? Thanks for all the IM's and posts here that have improved the FAQ.

 

Buster

[EAMom]

Hey Buster...there should be a question about non-strep illnesseses (viral, other bacterial) triggereing exacerbations...or did I miss it?

[thereishope]

I think I remember seeing a brief blurb about viruses under the last bullet under negative strep tests.

[memom]

Just wanted to bump up for newbies. Nice piece of info.

[Buster]

Closing this thread after incorporating above feedback.

 

Please don't add more on this thread. Please add comments on the new thread at

http://www.latitudes.org/forums/index.php?showtopic=6266