Hi everyone . . . 2 questions . . .

[Guest guest]

Can someone post me the link to the NIH PFS studies? I would love to

contact them and get on the list - but when I go to that website I

feel lost trying to figure it all out. I have't found a link

saying " Click here to be wait listed for PFS studies " . . . and I

KNOW it's not that easy - I guess that's just what I am looking for

(excuse my tired brain . . . I am a teacher and we have startd back

this week and I am TIRED).

Also - what do you all think about the reoccurence with the

tonsilectomy and puberty? Anyone know of any stats weighing pros and

cons of reoccurence?

My husband put the kids to bed late lastnight because I was working

till 10 trying to get my room ready - and Aidan didn't get to sleep

till midnight and got up at 7 - I already know that a fever is

coming. Seems whenever he gets really off schedule like that the

fevers come. I have read other post concerning this - but does

anyone know WHY it happens? Bad luck? Or something more concrete or

medical?

Thanks for listening guys . . . don't know what I would do without

this board.

Hannah

PS - Welcome back Fran!

[Guest guest]

I can tell you how I got on the list but I am not sure that it would be the one

that others would recommend (note: I am still on the list wating for a call to

get scheduled) but I thought I would give you my two cents. I just found it at

clinicaltrials.gov with identifier # NCT00001373. It lists the protocols they

are looking for. You can look at that site and check it out. Somewhere in the

info I got a phone number. I called and left a message to get info. They called

me back, I answered some questions and they sent me out the paperwork that I had

to fill out and that was required from my doctor. I filled out my form and gave

all the info to my pediatrician and she photocopied her documents and faxed it

all to them. I then followed up about two weeks later with an email to Nikki

Plass (who is no longer the person to contact) and made sure all the info got to

them (she said it did). Now I am still waiting to hear from them. That is all I

can give you the info on. I think I have read about others gettting in form

their doctors but I don't know how that works or if it is any quicker. Also if

anyone out there reading this has a new email address for me for the new contact

person at NIH for this study, I would appreciate it. That way I can check my

status on the " waitlist " again.

Good luck!

Lori

Mom to (TWO TOMORROW!) ?PFS

>

> From: " hannahls73 " <hannahlsmith@...>

> Date: 2006/08/10 Thu PM 10:53:09 EDT

>

> Subject: Hi everyone . . . 2 questions . . .

>

> Can someone post me the link to the NIH PFS studies? I would love to

> contact them and get on the list - but when I go to that website I

> feel lost trying to figure it all out. I have't found a link

> saying " Click here to be wait listed for PFS studies " . . . and I

> KNOW it's not that easy - I guess that's just what I am looking for

> (excuse my tired brain . . . I am a teacher and we have startd back

> this week and I am TIRED).

>

> Also - what do you all think about the reoccurence with the

> tonsilectomy and puberty? Anyone know of any stats weighing pros and

> cons of reoccurence?

>

> My husband put the kids to bed late lastnight because I was working

> till 10 trying to get my room ready - and Aidan didn't get to sleep

> till midnight and got up at 7 - I already know that a fever is

> coming. Seems whenever he gets really off schedule like that the

> fevers come. I have read other post concerning this - but does

> anyone know WHY it happens? Bad luck? Or something more concrete or

> medical?

>

> Thanks for listening guys . . . don't know what I would do without

> this board.

>

> Hannah

>

> PS - Welcome back Fran!

>

>

>

>

>

[Guest guest]

I had the same experience; called the number on the trial posting and

they lead me

through/sent me all the info. I needed to gather/have sent in; it was

pretty straightforward.

The NIH has received all of our paperwork and we are waiting to

hear back also (it's been 2 months so far)

try: http://clinicalstudies.info.nih.gov/detail/A_1994-AR-0105.html

http://clinicaltrials.gov/ct/show/NCT00001373?order=1

On Aug 11, 2006, at 6:03 AM, <slsjasrodgers@...> wrote:

> I can tell you how I got on the list but I am not sure that it

> would be the one that others would recommend (note: I am still on

> the list wating for a call to get scheduled) but I thought I would

> give you my two cents. I just found it at clinicaltrials.gov with

> identifier # NCT00001373. It lists the protocols they are looking

> for. You can look at that site and check it out. Somewhere in the

> info I got a phone number. I called and left a message to get info.

> They called me back, I answered some questions and they sent me out

> the paperwork that I had to fill out and that was required from my

> doctor. I filled out my form and gave all the info to my

> pediatrician and she photocopied her documents and faxed it all to

> them. I then followed up about two weeks later with an email to

> Nikki Plass (who is no longer the person to contact) and made sure

> all the info got to them (she said it did). Now I am still waiting

> to hear from them. That is all I can give you the info on. I think

> I have read about others gettting in form their doctors but I don't

> know how that works or if it is any quicker. Also if anyone out

> there reading this has a new email address for me for the new

> contact person at NIH for this study, I would appreciate it. That

> way I can check my status on the " waitlist " again.

> Good luck!

> Lori

> Mom to (TWO TOMORROW!) ?PFS

> >

> > From: " hannahls73 " <hannahlsmith@...>

> > Date: 2006/08/10 Thu PM 10:53:09 EDT

> >

> > Subject: Hi everyone . . . 2 questions . . .

> >

> > Can someone post me the link to the NIH PFS studies? I would love to

> > contact them and get on the list - but when I go to that website I

> > feel lost trying to figure it all out. I have't found a link

> > saying " Click here to be wait listed for PFS studies " . . . and I

> > KNOW it's not that easy - I guess that's just what I am looking for

> > (excuse my tired brain . . . I am a teacher and we have startd back

> > this week and I am TIRED).

> >

> > Also - what do you all think about the reoccurence with the

> > tonsilectomy and puberty? Anyone know of any stats weighing pros and

> > cons of reoccurence?

> >

> > My husband put the kids to bed late lastnight because I was working

> > till 10 trying to get my room ready - and Aidan didn't get to sleep

> > till midnight and got up at 7 - I already know that a fever is

> > coming. Seems whenever he gets really off schedule like that the

> > fevers come. I have read other post concerning this - but does

> > anyone know WHY it happens? Bad luck? Or something more concrete or

> > medical?

> >

> > Thanks for listening guys . . . don't know what I would do without

> > this board.

> >

> > Hannah

> >

> > PS - Welcome back Fran!

> >

> >

> >

> >

> >

>

>

>

d Timblin

mdefaye@...