Message from Moderators - regarding PANDAS posts

[Guest guest]

Hi everyone. We moderators of the group want to address PANDAS and the

sometimes seemingly " overwhelming " number of posts that are on this topic, where

it seems to dominate the conversation.

We welcome the knowledge that those who parent children with PANDAS or PITANDS

bring to the group. Judy Chabot (a moderator) has a child with PANDAS OCD.

We know at times any topic can begin to dominate (e.g., alternative treatments

besides medication, public school problems, someone asks about certain

medication experiences...) but it seems a sort of " trend " that when new members

join the group that not just one but many parents will reply to the new member

to check into PANDAS, that history or behaviors fall under the PANDAS criteria,

etc.

In other words, 3 or 4+ replies to check into PANDAS. Then more questions and

replies about it, and so on. We have noticed, and appreciate, the replies

that go beyond just mentioning PANDAS, those that talk about therapy and other

aspects of OCD. And we do notice the referrals to the latitudes group for more

information on PANDAS.

However, we have concerns that this frequently recurring topic and the many

subsequent posts (often repetitive to those not new) may be spoiling the

intended support of this group for others. PANDAS is not the main focus of our

group, or the medical community who treats OCD. Treatment recommendation

continues to be Cognitive Behavioral Therapy and Exposure & Response Prevention,

with medication as needed. We need to consider the group as a whole and have a

balance. We have privately received from some members their concern regarding

the abundance of posts about PANDAS.

We certainly want parents to know of the existence of PANDAS and PITANDS and to

consider it, and do understand your enthusiasm for " getting the word out. "

Also, everyone does love to hear how any treatment is going, improvements,

successes, setbacks, etc. So we do want discussion, or sharing, on the topic in

general. But the number of PANDAS posts in reply to new members is a concern.

PANDAS is the focus, rather than support for the new member.

For consideration of the group as a whole, we recommend:

(1) Please read replies first to see if another parent has already mentioned

PANDAS. Consider balance of information in response to posts.

(2) Discussion on PANDAS can continue privately, offline, and is available in

PANDAS groups such as the forum at www.latitudes.org. This refers to the more

repetitive part of the topic to new members – doctors who treat, what treatment

consists of.... This does not include updating the group on doctor

appointments, test results, progress.... We always welcome updates!

We welcome any ideas and feedback on this (from regular posters and lurkers) but

would like it sent PRIVATELY to the listowner at:

-owner

We hope following the above guidelines will lead to a greater enjoyment of the

group by all our members.

If you read this far, thank you!!

Castle

Judy Chabot

BJ Closner

Barb Nesrallah