Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Okay - I got an email response from Plaas and she received my daughters paperwork at NIH. That is all that was said in her email. That was all I really asked but now I am wondering about a timeline here. How much longer until I here something form them? Do they reject people based on the paperwork? What and when should I expect next? I am sorry I am not a patient person - especially when it comes to my kids!!! Just curious of others experience and how long this ball took to get rolling until I get there. Thanks for your input. Lori Rodgers mom to four daughters including 23 months (possible ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 You can email her and ask! LOL Usually it seems within this past year it takes about 3-4 months to hear back to set up an appointment. I have never heard of anyone rejected.. If they submit medical records and a letter backing up the periodic fevers. It use to take up to a year to be seen for many people but since the adult and pediatric clinics have a research nurse for each timing is better. Not sure if this helps!! Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 I would have emailed her but I was afraid that I would be a pain in her butt before I even got there! LOL I didn't want to nag - yet. Yes it helps. So if I hear nothing in like 2-3 months then I give her an email and see what is going on. And constantly remind myself to BE PATIENT! Thank you. Lori Rodgers mom to four daughters including 23 months (possible ) > > From: " Fran Bulone " <fbulone@...> > Date: 2006/07/06 Thu PM 04:13:22 EDT > < > > Subject: RE: question about NIH > > You can email her and ask! LOL > > > > Usually it seems within this past year it takes about 3-4 months to hear > back to set up an appointment. > > I have never heard of anyone rejected.. If they submit medical records and a > letter backing up the periodic fevers. > > > > It use to take up to a year to be seen for many people but since the adult > and pediatric clinics have a research nurse for each timing is better. > > > > Not sure if this helps!! > > > > Fran A Bulone > Mom to ph 7 yrs old > Waxhaw, NC > > Owner & Moderator Group > <> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Lori, I'm in the same boat. I just emailed Plass today (with the same reservations about bugging her). I faxed my paperwork in early March and I have not heard anything. I was concerned about whether they had actually received it, so I thought that gave me a good excuse to contact her. She emailed back within five minutes to say that they do have 's paperwork and that there is a wait list. She didn't say anything about how long the wait would be, but we're at four months already. I wonder if they take them in the order they are received, or if they prioritize based on something in the records that they are looking for? Does anyone know? I would also love to hear how long it took from those who have gotten in. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 applied december.. was to go february had to delay til april Re: RE: question about NIH Lori, I'm in the same boat. I just emailed Plass today (with the same reservations about bugging her). I faxed my paperwork in early March and I have not heard anything. I was concerned about whether they had actually received it, so I thought that gave me a good excuse to contact her. She emailed back within five minutes to say that they do have 's paperwork and that there is a wait list. She didn't say anything about how long the wait would be, but we're at four months already. I wonder if they take them in the order they are received, or if they prioritize based on something in the records that they are looking for? Does anyone know? I would also love to hear how long it took from those who have gotten in. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Wow, must be good with the emails because mine also came back in FIVE minutes too! LOL Thanks for the update on yours. I am glad I am not the only one not so patiently waiting for answers. Mine hasnt' even been nearly as long. Let me know if you get you appointment and when it is for. I will do the same for you but i hope you get the call before me. Take Care! Lori Mom to four daughters including 23 months (possible ) > > From: " Klooster " <andreaklooster@...> > Date: 2006/07/06 Thu PM 08:55:22 EDT > > Subject: Re: RE: question about NIH > > Lori, > > I'm in the same boat. I just emailed Plass today (with the same > reservations about bugging her). I faxed my paperwork in early March and I > have not heard anything. I was concerned about whether they had actually > received it, so I thought that gave me a good excuse to contact her. She > emailed back within five minutes to say that they do have 's paperwork > and that there is a wait list. She didn't say anything about how long the > wait would be, but we're at four months already. I wonder if they take them > in the order they are received, or if they prioritize based on something in > the records that they are looking for? Does anyone know? I would also love > to hear how long it took from those who have gotten in. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 our Doctor-Rheumotologist, handled everything for us...he first spoke with Dr. Kastner in April and we finally arrived at the NIH for our first visit in November-our son was SO sick when we arrived!!! Klooster <andreaklooster@...> wrote: Lori, I'm in the same boat. I just emailed Plass today (with the same reservations about bugging her). I faxed my paperwork in early March and I have not heard anything. I was concerned about whether they had actually received it, so I thought that gave me a good excuse to contact her. She emailed back within five minutes to say that they do have 's paperwork and that there is a wait list. She didn't say anything about how long the wait would be, but we're at four months already. I wonder if they take them in the order they are received, or if they prioritize based on something in the records that they are looking for? Does anyone know? I would also love to hear how long it took from those who have gotten in. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi - we applied in April of last year, got a call in September and went in November. From reading this forum, it seemed like people were getter faster responses this last winter, but maybe things have slowed down again. Also, I'm not sure if they call based on first applied or severity of the situation, etc. Only from what I've read here, I don't think anyone has been turned down for the study. Good luck - I know the waiting is hard! am > > > Okay - I got an email response from Plaas and she received my daughters paperwork at NIH. That is all that was said in her email. That was all I really asked but now I am wondering about a timeline here. How much longer until I here something form them? Do they reject people based on the paperwork? What and when should I expect next? I am sorry I am not a patient person - especially when it comes to my kids!!! Just curious of others experience and how long this ball took to get rolling until I get there. Thanks for your input. > Lori Rodgers > mom to four daughters including 23 months (possible ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi All, Once accepted into the NIH program, what is the commitment? It sounds like those of you who are already in the program go to NIH several times a year. I have just received the paperwork for my daughter, but we live on the West Coast (San Francisco area) and multiple trips don't seem very feasable for us. Can you go and get all the neccessary testing done in one trip and then have your local docs do follow up with NIH? Or, must you commit to follow up testing at their hospital? Thanks for your replies. Mother to (5) and Audrey (3 ) --- maryamjn <maryamjn@...> wrote: > Hi - we applied in April of last year, got a call in > September and > went in November. From reading this forum, it > seemed like people were > getter faster responses this last winter, but maybe > things have slowed > down again. Also, I'm not sure if they call based > on first applied or > severity of the situation, etc. Only from what I've > read here, I > don't think anyone has been turned down for the > study. > > Good luck - I know the waiting is hard! > > am > > > > > > > > Okay - I got an email response from Plaas > and she received my > daughters paperwork at NIH. That is all that was > said in her email. > That was all I really asked but now I am wondering > about a timeline > here. How much longer until I here something form > them? Do they reject > people based on the paperwork? What and when should > I expect next? I > am sorry I am not a patient person - especially when > it comes to my > kids!!! Just curious of others experience and how > long this ball took > to get rolling until I get there. Thanks for your > input. > > Lori Rodgers > > mom to four daughters including 23 months > (possible ) > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 We live in Alberta Canada.. it takes me almost a whole day to fly out there. We went in APril we are going in AUgust only because they are very stumped by her. A lot of people go every 6 months is my impression. IT IS a wonderful place to go!! and the first day you are there a lot of tests are done .. Also for those going more . alot of them are there all the times yes.. but they live close~ mom to kiara 5 Re: Re: question about NIH Hi All, Once accepted into the NIH program, what is the commitment? It sounds like those of you who are already in the program go to NIH several times a year. I have just received the paperwork for my daughter, but we live on the West Coast (San Francisco area) and multiple trips don't seem very feasable for us. Can you go and get all the neccessary testing done in one trip and then have your local docs do follow up with NIH? Or, must you commit to follow up testing at their hospital? Thanks for your replies. Mother to (5) and Audrey (3 ) --- maryamjn <maryamjn@...> wrote: > Hi - we applied in April of last year, got a call in > September and > went in November. From reading this forum, it > seemed like people were > getter faster responses this last winter, but maybe > things have slowed > down again. Also, I'm not sure if they call based > on first applied or > severity of the situation, etc. Only from what I've > read here, I > don't think anyone has been turned down for the > study. > > Good luck - I know the waiting is hard! > > am > > > > > > > > Okay - I got an email response from Plaas > and she received my > daughters paperwork at NIH. That is all that was > said in her email. > That was all I really asked but now I am wondering > about a timeline > here. How much longer until I here something form > them? Do they reject > people based on the paperwork? What and when should > I expect next? I > am sorry I am not a patient person - especially when > it comes to my > kids!!! Just curious of others experience and how > long this ball took > to get rolling until I get there. Thanks for your > input. > > Lori Rodgers > > mom to four daughters including 23 months > (possible ) > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 >>>Once accepted into the NIH program, what is the commitment? It sounds like those of you who are already in the program go to NIH several times a year. I have just received the paperwork for my daughter, but we live on the West Coast (San Francisco area) and multiple trips don't seem very feasable for us. Can you go and get all the neccessary testing done in one trip and then have your local docs do follow up with NIH? Or, must you commit to follow up testing at their hospital?>> If you read the paperwork and consent you sign, it states you can pull out of the research at ANY point. As for how many times? This ALL depends on diagnosis. A child who is actually ruled as may go back once a year and just spend a morning at the clinic. A child who has a genetic fever disorder or they find an immune problem, may need to go anywhere from once every 6 months for up to 4 days (like my son) or more often. Simply depends on the actual diagnosis. The initial visit for a child who ONLY has symptoms and labs that correspond goes the fist time for a day at the clinic. Actually if all appointments go smooth along with the consultations in the AM you will be seen early and then go to the lab for blood and urine tests and then you go home. Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 >>>Hi - we applied in April of last year, got a call in September and went in November. From reading this forum, it seemed like people were getter faster responses this last winter, but maybe things have slowed down again. Also, I'm not sure if they call based on first applied or severity of the situation, etc. Only from what I've read here, I don't think anyone has been turned down for the study. Good luck - I know the waiting is hard!>>> Totally agree with am here. When I initially started this group. and NIH began becoming more familiar. Janet took care of all the fever people. It took UP to a year to actually be called.. Then set up an appointment. Later it remained BUSY when Bev took over from Janet. took on average 6-9 months to get a call sometimes longer.. When Nikki took the PEDIATRIC position.. And split the fever people.. Once Nikki got over her LEARNING curve we began seeing the patients get called quicker. However lately it does seem they are getting more and more consultations (thanks largely to our site !!) and it is taking longer for the appointment call. Be patient.. it is worth the wait. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Also. forgot to mention. There is a triage method when they contact people. In general it is a numbered waiting list and it goes in order however when they review a chart with a child or adult who has to be seen sooner because of significant labs that alarm the docs up there. or if siblings are both fevering and have certain lab studies. they will be called out of order and much sooner. We have had a few children in this group bump way ahead of other kids because of this.. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Thank goodness, thinga ARE a lot quicker now then they were when we were first accepted into the study! Janet took care of us and it seemed like forever...Nikki calls and replies to emails, usually, right away!! Good luck, and count your blessings to be heading to such a wonderful place that offers so much hope for PFS Families. Lori Fran Bulone <fbulone@...> wrote: >>>Hi - we applied in April of last year, got a call in September and went in November. From reading this forum, it seemed like people were getter faster responses this last winter, but maybe things have slowed down again. Also, I'm not sure if they call based on first applied or severity of the situation, etc. Only from what I've read here, I don't think anyone has been turned down for the study. Good luck - I know the waiting is hard!>>> Totally agree with am here. When I initially started this group. and NIH began becoming more familiar. Janet took care of all the fever people. It took UP to a year to actually be called.. Then set up an appointment. Later it remained BUSY when Bev took over from Janet. took on average 6-9 months to get a call sometimes longer.. When Nikki took the PEDIATRIC position.. And split the fever people.. Once Nikki got over her LEARNING curve we began seeing the patients get called quicker. However lately it does seem they are getting more and more consultations (thanks largely to our site !!) and it is taking longer for the appointment call. Be patient.. it is worth the wait. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
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