Re: OCD update from director of NIMH

[Guest guest]

Thank You for posting this, can you believe that the doctors NEVER gave me

the results of Sam's blood work form the hospital? He had blood work done while

he was there over a week and a half ago and they never gave me the results! But

I have all the " people " from his current people and his psychiatrist helping me

to follow up too.

Frustrating though to say the least...

Heidi

>

> http://www.nimh.nih.gov/about/director/index-ocd.shtml. This may help with

your doctors if you suspect pandas or pitands, for a child with sudden overnight

(within a few wks) onset of OCD. Looks like some exciting additional research

will be sponsored, so maybe in the future, this disease will be more commonly

recognized by pediatricians.

> in nc

>

[Guest guest]

Heidi,

If there is one thing I've learned through this whole PANDAS experience is

to be proactive. I go directly to the lab as soon as the results are in and

I pick them up. (call and see if they are in) I don't wait for the

doctor's office to get around to getting the results to me. You have to

sign a release but they are yours.

From:

[mailto: ] On Behalf Of Heidi Voigt

Sent: Monday, August 16, 2010 11:37 AM

To:

Subject: Re: OCD update from director of NIMH

Thank You for posting this, can you believe that the doctors NEVER

gave me the results of Sam's blood work form the hospital? He had blood work

done while he was there over a week and a half ago and they never gave me

the results! But I have all the " people " from his current people and his

psychiatrist helping me to follow up too.

Frustrating though to say the least...

[Guest guest]

,

Thanks for the tip. If only I could get them that easily. The hospital is three

hours from here! I will keep hounding them!

Heidi

>

> Heidi,

>

> If there is one thing I've learned through this whole PANDAS experience is

> to be proactive. I go directly to the lab as soon as the results are in and

> I pick them up. (call and see if they are in) I don't wait for the

> doctor's office to get around to getting the results to me. You have to

> sign a release but they are yours.

>

>

>

>

>

[Guest guest]

Hounding them is working... I am told we will have an answer by noon tomorrow...

let's see if that happens!

> >

> > Heidi,

> >

> > If there is one thing I've learned through this whole PANDAS experience is

> > to be proactive. I go directly to the lab as soon as the results are in and

> > I pick them up. (call and see if they are in) I don't wait for the

> > doctor's office to get around to getting the results to me. You have to

> > sign a release but they are yours.

> >

> >

> >

> >

> >

>

[Guest guest]

Okay, did the link change/move? It's almost 8pm here, and link isn't working

for me. Anyone else with this problem?

>

> http://www.nimh.nih.gov/about/director/index-ocd.shtml. This may help with

your doctors if you suspect pandas or pitands, for a child with sudden overnight

(within a few wks) onset of OCD. Looks like some exciting additional research

will be sponsored, so maybe in the future, this disease will be more commonly

recognized by pediatricians.

> in nc

>

[Guest guest]

Sorry Chris... I should have said... I had to type it into my browser in order

to get it to work. As I started typing the first part it magically finished it

and popped up... hmmmm

> >

> > http://www.nimh.nih.gov/about/director/index-ocd.shtml. This may help with

your doctors if you suspect pandas or pitands, for a child with sudden overnight

(within a few wks) onset of OCD. Looks like some exciting additional research

will be sponsored, so maybe in the future, this disease will be more commonly

recognized by pediatricians.

> > in nc

> >

>

[Guest guest]

http://www.nimh.nih.gov/about/director/index-ocd.shtml#p98381

Try this one?

> > >

> > > http://www.nimh.nih.gov/about/director/index-ocd.shtml. This may help with

your doctors if you suspect pandas or pitands, for a child with sudden overnight

(within a few wks) onset of OCD. Looks like some exciting additional research

will be sponsored, so maybe in the future, this disease will be more commonly

recognized by pediatricians.

> > > in nc

> > >

> >

>

[Guest guest]

That link works, thanks. And you too Heidi!

> > > >

> > > > http://www.nimh.nih.gov/about/director/index-ocd.shtml. This may help

with your doctors if you suspect pandas or pitands, for a child with sudden

overnight (within a few wks) onset of OCD. Looks like some exciting additional

research will be sponsored, so maybe in the future, this disease will be more

commonly recognized by pediatricians.

> > > > in nc

> > > >

> > >

> >

>

[Guest guest]

Interesting! I imagine they'll be a long line trying to get in that study!

A question about IVIG -- what is the long-term for those who have it and

OCD/tics wane or disappear? Will antibiotics still be needed to hold strep at

bay (during strep season for example) or should the IVIG hold up long-term?

(hope that question makes sense)

[Guest guest]

Long term studies have sadly not been done yet - but I think they will be soon!

The " controversy " about PANDAS has really held the research back. They are

still exploring a lot of the underlying reasons why some small pool of kids are

susceptable to getting a neuropsychiatric disorder as a result of illness. Is

there something else involved?

But from what I have experienced in interviewing docs, most are still using abx

for some time, to prevent additional exposures until the IVIG has a solid chance

to heal. (to be open about this, we have not, at this point, done IVIG, and if

we can maintain the current level of health we will not do so).

>