Re: From Moderator: regarding Steffanie's post and to PANDAS parents

[Guest guest]

The ongoing dissention around PANDAS and the discussion of it, has got to stop.

This is a support site.

If you have a complaint about the running of this site you are welcome to

address this to the moderators. If you do not like the discussion happening on

the website, again, please take this up with the moderators, offline would be

the respectful approach. If your issue is with the person making the post, of

course you can take that up with them. But to say that what they are discussing

is not of value, is disrespectful to all those having the discussion. I am

offended personally and for those individuals involved.

Steffanie, if you are reading I sincerely hope that you will return, I enjoyed

our conversations. Please know that I would be happy to connect with you

anytime, my personal email is

barbnesrallah@....

For those members who continue to express dissatisfaction with how things are

being handled, with regard to PANDAS discussion; if your issue is really about

the fact that you feel that you can't talk about what you want to talk about,

then the suggestion has already been made that you need to make a space where

you can do so. This is said respectfully, and with the offer to help make this

happen if desired.

The moderators have tried repeatedly to clarify that PANDAS discussion in

general is fine, and have defined clearly what IS at issue. I personally am at

a loss as to what it is that certain individuals, who continue to voice

complaints, want to occur.

has asked that emails be sent directly to her. I support her post, and

will work with her and the other moderators to resolve this issue offline, so

that this group can be what it is meant to be about - SUPPORT!

Respectfully,

Barb Nesrallah

>

> OK Group! I think Steffanie worded that very well! She has already

unsubscribed from our group.

>

> What I would like now is for any/all PANDAS parents who have " something to

say " to please email me PRIVATELY at @... and we can settle this

once and for all.

>

> I have been working hard to get documents created to go in our FILES section

for new members to read about PANDAS as a way to help our earlier problem with

letting new members know about PANDAS.

>

> I have tried every way in past months to let members know that PANDAS IS NOT

BARRED FROM BEING DISCUSSED HERE. It is the multiple posts to the *new*

members who just joined, stating they should check into PANDAS and so on that we

were addressing. We would like to hear about how treatment for PANDAS is going

with your child.

>

> Again - please email me privately with any of your thoughts/comments and we

WILL GET THIS SETTLED. Do not email to -owner, as I will share

info with other moderators after I hear from everyone. This is the only & last

time for all those concerned about the PANDAS topic here to email me about it

with your comments.

>

> Steffanie made good points and I am hoping she will rejoin our group, I

enjoyed having her as a member.

>

>

> Castle

> Co-Moderator

>

>

>

>

>

>

> Wooh. Thank you to all of the people who have been supportive to me and very

> helpful. I am afraid I will be leaving this group. I came here for support

> because I am an emotional wreck because of my child's conditions. It seems

that

> some are very touchy about certain subjects. I don't give a care about PANDAS,

> so I delete those emails. If the messages don't pertain to me or I'm not

> interested, there's this great little button at the top that says " delete. " Do

> I think psychic abilities realte to our kids? Yes, sometimes. My son has

> them--separate from OCD. Too often kids are diagnosed with mental illnesses

> when it's not that at all. If a parent is struggling with these things with

> their kids but also has an OCD diagnosis that doesn't match, why is that not

> relevant? Do alternative treatments have a place? Yes, they do. They help

> many people. Just because one person's views don't match yours doesn't make it

> irrelevant. It might help someone. My son might have ADHD. Not

> OCD but a comorbid condition often times. Many of our kids have other

> conditions, so we can't talk about any of those Terry? Or is ADHD not a touchy

> subject for you? You are perceiving that certain things don't pertain to OCD.

> I perceive that they do, and so do some others. So if there's going to be

> nastiness, it does not lift me up or encourage me. I feel like people are

being

> nasty because it's not something they're interested in. I feel bad enough

> because of my kid and the meanness happening to him at school. I can't deal

> with grown people being nasty. Again, thank you to those who have been helpful

> and supportive to me. No thanks to the ones being negative and nasty.

>

> Steffanie

>

[Guest guest]

> > >

> > > OK Group! I think Steffanie worded that very well! She has already

unsubscribed from our group.

> > >

> > > What I would like now is for any/all PANDAS parents who have " something to

say " to please email me PRIVATELY at @ and we can settle this once

and for all.

> > >

> > > I have been working hard to get documents created to go in our FILES

section for new members to read about PANDAS as a way to help our earlier

problem with letting new members know about PANDAS.

> > >

> > > I have tried every way in past months to let members know that PANDAS IS

NOT BARRED FROM BEING DISCUSSED HERE. It is the multiple posts to the *new*

members who just joined, stating they should check into PANDAS and so on that we

were addressing. We would like to hear about how treatment for PANDAS is going

with your child.

> > >

> > > Again - please email me privately with any of your thoughts/comments and

we WILL GET THIS SETTLED. Do not email to -owner, as I will

share info with other moderators after I hear from everyone. This is the only &

last time for all those concerned about the PANDAS topic here to email me about

it with your comments.

> > >

> > > Steffanie made good points and I am hoping she will rejoin our group, I

enjoyed having her as a member.

> > >

> > >

> > > Castle

> > > Co-Moderator

> > >

>