Re: Fw: Unique child-psychic ability

[Guest guest]

I totally totally agree with Terry Rumas' post. Myself was banned from this

group not to  discussed about PANDAS and this forced me to go out of this group

and formed my own blogg to keep exchanging life-save information with other

parents about treating OCD is actually to treat PANDAS.  PANDAS is related to

OCD behaviors and it is a better approach then just giving our children SSRI or

anti-psychotic medication to reduce OCD.

As a matter of fact, myself somehow and someway has some psychic ability or more

intiuitive spiritually, however, this is all great but this is not a useful or

life-save message to be exchanged here in terms of helping our children who are

suffering from OCD. People who are interested in psychic power can do the same

thing like I did,,,, go out of this forum and form another blogg or forum

targeted on psychic topics.

 

 

 

Subject: Fw: Unique child-psychic ability

To:

Date: Friday, November 12, 2010, 7:09 AM

 

Unique child-psychic ability

I'm sorry, but I have to protest that you moderators would deny legitimate

discussions of PANDAS on our site, but you would allow snake oil discussions

about psychic ability and mediums.

This has nothing to do with 'support' and in my opinion has no business being

allowed on our site.

It reduces all of our credibility and makes us look like buffoons.

I happen to believe in psychic ability, but I think it has absolutely NO place

in our discussions about OCD, treatments and supporting our experiences.

As a mom of an OCD-PANDAS child who was helped by reading numerous intelligent

posts about signs and symptoms of PANDAS on this site--I finally, after 2 years,

realized my child might have PANDAS and sought help. He is now being treated for

that. If I were a new parent joining this site and read about psychic ability

and mediums, I would turn tail and run.

Out of respect for the moderators, I have not posted about PANDAS and have not

updated a lot in order to limit discussions. I am amazed that you would allow

this type of post to continue.

Terry Rumas, DMD

[Guest guest]

Terry, there is no reason that you cannot discuss treatment, updates etc about

PANDAS, no one has asked you to not do this. The request from moderators was to

help maintain balance of discussion on the website, and to address the

duplication of posts to new members about PANDAS.

In terms of people sharing stories about experiences with their children, while

it may not directly be OCD related, in fact it may, and may also be connected

with medications, or it may legitimately be " other " . This type of discussion,

in my view, comes under, " parenting challenges " that come along with dealing

with all of our " unique " children.

We are not a foundation, or organization of any kind. We are a parent support

group. How people get support, and quite what they need varies, as do beliefs

and values. Credibility, in terms of parents sharing their experiences and

beliefs, I don't believe, is the responsibility of moderators, or reflective of

the value or lack thereof of this website. It is simply sharing, and personally

I am glad that people feel comfortable enough to share whatever they would like

to here.

Barb Nesrallah

Moderator

>

>

> Unique child-psychic ability

>

>

> I'm sorry, but I have to protest that you moderators would deny legitimate

discussions of PANDAS on our site, but you would allow snake oil discussions

about psychic ability and mediums.

>

> This has nothing to do with 'support' and in my opinion has no business being

allowed on our site.

>

> It reduces all of our credibility and makes us look like buffoons.

>

> I happen to believe in psychic ability, but I think it has absolutely NO place

in our discussions about OCD, treatments and supporting our experiences.

>

> As a mom of an OCD-PANDAS child who was helped by reading numerous intelligent

posts about signs and symptoms of PANDAS on this site--I finally, after 2 years,

realized my child might have PANDAS and sought help. He is now being treated for

that. If I were a new parent joining this site and read about psychic ability

and mediums, I would turn tail and run.

>

> Out of respect for the moderators, I have not posted about PANDAS and have not

updated a lot in order to limit discussions. I am amazed that you would allow

this type of post to continue.

>

> Terry Rumas, DMD

>

>

[Guest guest]

No one was ever banned, if that were the case you would not be able to make this

post! Please refer to my post to Terry.

Barb

>

>

>

> Subject: Fw: Unique child-psychic ability

> To:

> Date: Friday, November 12, 2010, 7:09 AM

>

>

>  

>

>

>

>

> Unique child-psychic ability

>

> I'm sorry, but I have to protest that you moderators would deny legitimate

discussions of PANDAS on our site, but you would allow snake oil discussions

about psychic ability and mediums.

>

> This has nothing to do with 'support' and in my opinion has no business being

allowed on our site.

>

> It reduces all of our credibility and makes us look like buffoons.

>

> I happen to believe in psychic ability, but I think it has absolutely NO place

in our discussions about OCD, treatments and supporting our experiences.

>

> As a mom of an OCD-PANDAS child who was helped by reading numerous intelligent

posts about signs and symptoms of PANDAS on this site--I finally, after 2 years,

realized my child might have PANDAS and sought help. He is now being treated for

that. If I were a new parent joining this site and read about psychic ability

and mediums, I would turn tail and run.

>

> Out of respect for the moderators, I have not posted about PANDAS and have not

updated a lot in order to limit discussions. I am amazed that you would allow

this type of post to continue.

>

> Terry Rumas, DMD

>

>

[Guest guest]

I agree !

Sent from my Verizon Wireless BlackBerry

Fw: Unique child-psychic ability

Unique child-psychic ability

I'm sorry, but I have to protest that you moderators would deny legitimate

discussions of PANDAS on our site, but you would allow snake oil discussions

about psychic ability and mediums.

This has nothing to do with 'support' and in my opinion has no business being

allowed on our site.

It reduces all of our credibility and makes us look like buffoons.

I happen to believe in psychic ability, but I think it has absolutely NO place

in our discussions about OCD, treatments and supporting our experiences.

As a mom of an OCD-PANDAS child who was helped by reading numerous intelligent

posts about signs and symptoms of PANDAS on this site--I finally, after 2 years,

realized my child might have PANDAS and sought help. He is now being treated for

that. If I were a new parent joining this site and read about psychic ability

and mediums, I would turn tail and run.

Out of respect for the moderators, I have not posted about PANDAS and have not

updated a lot in order to limit discussions. I am amazed that you would allow

this type of post to continue.

Terry Rumas, DMD

[Guest guest]

Only have a moment now (at work) but wanted to emphasize Barb's note that the

PANDAS topic was addressed regarding NEW members to the group, not general

discussion for day to day stuff, how treatment with member's child is going,

etc.

It had gotten out of hand with the emphasis of posts each NEW (repeat, NEW!)

member received about checking into PANDAS from multiple parents and the writer

not having checked to see if someone else had mentioned it. It was a bit

*pushy* for a NEW member to get so many replies to their introductory post

regarding getting their child tested for PANDAS.

And then just the general replies back/forth to " what is PANDAS? " etc.

We addressed this saying if ONE person has mentioned PANDAS to a new member,

then that is enough.

Please, PANDAS parents, please DO discuss about how the antibiotics are working,

how IVIG is helping (or not), if you've gotten test results for PANDAS, if

you've found a doctor to treat, etc, etc., regarding your PANDAS child. Just as

we, who aren't treating PANDAS, discuss how SSRIs are/aren't working with our

children, how CBT/ERP therapy is going, trying to find a therapist, etc.

(hopefully PANDAS children are receiving the therapy too!)

(Co-Moderator)

>

> Terry, there is no reason that you cannot discuss treatment, updates etc about

PANDAS, no one has asked you to not do this. The request from moderators was to

help maintain balance of discussion on the website, and to address the

duplication of posts to new members about PANDAS.

>

[Guest guest]

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

To:

From: jchabot@...

Date: Fri, 12 Nov 2010 07:31:42 -0800

Subject: Fw: Unique child-psychic ability

----- Forwarded Message ----

To: Terry Rumas

Cc: Barb Nesrallah ; svdbyhislove

; Castle

Sent: Fri, November 12, 2010 10:28:39 AM

Subject: Re: Unique child-psychic ability

Terry,

I can understand your frustration, because I have a PANDAS child as well, and as

a matter of fact my son just spent 4 days in the hospital getting IVIG for it,

and there was not one nurse or doctor there that knew anything about PANDAS, and

actually thought I had made up the diagnosis.

There actually has been scientific eveidence based on the fact that there are

some kids who have taken literally dozens and dozens of meds for serious

hallucinations,bad thoughts, etc and have never gotten better. Why? Because they

are not mentally ill.I am not saying my daughter is psychic or anyone else's for

that matter.Kids can be sick due to vitamin deficiencies and they can have ocd

symptoms as well.

I'm not trying to argue with you. This was a simple post which led to other

posts( only a few)which got out of hand. I began taking the posts offline this

morning after seeing it was out of hand .As I mentioned before, the PANDAS was

getting ridiculous, where practically every post that was going through was

about PANDAS.Now one topic starts and all the PANDAS kids moms are angry. This

topic has not gone on and on for weeks like the PANDAS.

Once again, I apologized earlier for this. It shouldn't have happened, but i

honestly don't see a reason for an argument.

Judy

[Guest guest]

Well said, Steffanie. I think we need to focus on being helpful and supportive

to each other. If we have concerns or questions, we can contact moderators

directly (I think). That delete button is incredibly handy! Also, it can help

to let an e-mail sit before responding if it is bothering us. We all have

enough battles to fight; let's not pick battles with each other. I hope you

will reconsider leaving the group, Steffanie, as I think this group is usually

able to get back on track.

(mom w/OCD, 10.5 yo dd w/OCD)

Re: Unique child-psychic ability

Terry,

I can understand your frustration, because I have a PANDAS child as well, and as

a matter of fact my son just spent 4 days in the hospital getting IVIG for it,

and there was not one nurse or doctor there that knew anything about PANDAS, and

actually thought I had made up the diagnosis.

There actually has been scientific eveidence based on the fact that there are

some kids who have taken literally dozens and dozens of meds for serious

hallucinations,bad thoughts, etc and have never gotten better. Why? Because they

are not mentally ill.I am not saying my daughter is psychic or anyone else's for

that matter.Kids can be sick due to vitamin deficiencies and they can have ocd

symptoms as well.

I'm not trying to argue with you. This was a simple post which led to other

posts( only a few)which got out of hand. I began taking the posts offline this

morning after seeing it was out of hand .As I mentioned before, the PANDAS was

getting ridiculous, where practically every post that was going through was

about PANDAS.Now one topic starts and all the PANDAS kids moms are angry. This

topic has not gone on and on for weeks like the PANDAS.

Once again, I apologized earlier for this. It shouldn't have happened, but i

honestly don't see a reason for an argument.

Judy

[Guest guest]

Wish you would saty Steffanie. You have been very helpful to me.

>

> 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

>

> To:

> From: jchabot@...

> Date: Fri, 12 Nov 2010 07:31:42 -0800

> Subject: Fw: Unique child-psychic ability

>

> ----- Forwarded Message ----

>

> To: Terry Rumas

> Cc: Barb Nesrallah ; svdbyhislove

> ; Castle

> Sent: Fri, November 12, 2010 10:28:39 AM

> Subject: Re: Unique child-psychic ability

>

> Terry,

> I can understand your frustration, because I have a PANDAS child as well, and

as

> a matter of fact my son just spent 4 days in the hospital getting IVIG for it,

> and there was not one nurse or doctor there that knew anything about PANDAS,

and

> actually thought I had made up the diagnosis.

>

> There actually has been scientific eveidence based on the fact that there are

> some kids who have taken literally dozens and dozens of meds for serious

> hallucinations,bad thoughts, etc and have never gotten better. Why? Because

they

> are not mentally ill.I am not saying my daughter is psychic or anyone else's

for

> that matter.Kids can be sick due to vitamin deficiencies and they can have ocd

> symptoms as well.

>

> I'm not trying to argue with you. This was a simple post which led to other

> posts( only a few)which got out of hand. I began taking the posts offline this

> morning after seeing it was out of hand .As I mentioned before, the PANDAS was

> getting ridiculous, where practically every post that was going through was

> about PANDAS.Now one topic starts and all the PANDAS kids moms are angry. This

> topic has not gone on and on for weeks like the PANDAS.

> Once again, I apologized earlier for this. It shouldn't have happened, but i

> honestly don't see a reason for an argument.

> Judy

>

>

>

[Guest guest]

Thank you and Steffanie!!!!!!!!!!!!!!!!

________________________________

To:

Sent: Fri, November 12, 2010 6:01:39 PM

Subject: Re: Fw: Unique child-psychic ability

 

Well said, Steffanie. I think we need to focus on being helpful and supportive

to each other. If we have concerns or questions, we can contact moderators

directly (I think). That delete button is incredibly handy! Also, it can help

to let an e-mail sit before responding if it is bothering us. We all have

enough battles to fight; let's not pick battles with each other. I hope you

will reconsider leaving the group, Steffanie, as I think this group is usually

able to get back on track.

(mom w/OCD, 10.5 yo dd w/OCD)

Re: Unique child-psychic ability

Terry,

I can understand your frustration, because I have a PANDAS child as well, and as

a matter of fact my son just spent 4 days in the hospital getting IVIG for it,

and there was not one nurse or doctor there that knew anything about PANDAS, and

actually thought I had made up the diagnosis.

There actually has been scientific eveidence based on the fact that there are

some kids who have taken literally dozens and dozens of meds for serious

hallucinations,bad thoughts, etc and have never gotten better. Why? Because they

are not mentally ill.I am not saying my daughter is psychic or anyone else's for

that matter.Kids can be sick due to vitamin deficiencies and they can have ocd

symptoms as well.

I'm not trying to argue with you. This was a simple post which led to other

posts( only a few)which got out of hand. I began taking the posts offline this

morning after seeing it was out of hand .As I mentioned before, the PANDAS was

getting ridiculous, where practically every post that was going through was

about PANDAS.Now one topic starts and all the PANDAS kids moms are angry. This

topic has not gone on and on for weeks like the PANDAS.

Once again, I apologized earlier for this. It shouldn't have happened, but i

honestly don't see a reason for an argument.

Judy