Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Fran, I received it today as well. Tracey mom to Maddie, age 6 Brent, age 10 League City, TX On Wednesday, August 17, 2005, at 05:02 PM, Fran Bulone wrote: > Hello, > Today I received a new survey from NIH. It specifically is for Periodic > Fever Patients who have been seen in the clinic and who do not have a > genetic diagnosis. It is part of their study on the natural history of > periodic fever in children and they are requesting participation. > > There is an intro letter and inside a package with several items to > help > them collect data on the current status of the children. > > 1. Interval History Form: this is for the parent to complete. (or adult > periodic fever pt) It is to be sent back when completed. > > 2. A request for medical info from personal physician: the letter > authorizes > private MD to release info on our children to NIH. It is to be sent to > the > MD or taken to him. > > 3. Physical Exam Form and second prepaid envelope. This is for the > child's > physician to complete. Needs to go along with # 2 above. If physical > done in > past 6 months, MD can complete form from the visit. Or if a planned > visit is > in the next 6 mths, have the doctor complete the form. > > 4. We will ask your MD to send results of latest lab test performed on > the > child. If you have a copy send them. > > This info is all going to Dr. Karyl S Barron MD along with Kastner and > the > rest of his team. > > Wondering if anyone else here in the group who has visited NIH and not > received a genetic diagnosis yet... received this!! > We are going to complete it and return. > Good to see they are checking on the kids > God Bless > Fran > > > > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi Fran, They told me about the survey yesterday! I was asked to fill it out like we had never been at NIH! I have yet to see it! NIH new study Hello, Today I received a new survey from NIH. It specifically is for Periodic Fever Patients who have been seen in the clinic and who do not have a genetic diagnosis. It is part of their study on the natural history of periodic fever in children and they are requesting participation. There is an intro letter and inside a package with several items to help them collect data on the current status of the children. 1. Interval History Form: this is for the parent to complete. (or adult periodic fever pt) It is to be sent back when completed. 2. A request for medical info from personal physician: the letter authorizes private MD to release info on our children to NIH. It is to be sent to the MD or taken to him. 3. Physical Exam Form and second prepaid envelope. This is for the child's physician to complete. Needs to go along with # 2 above. If physical done in past 6 months, MD can complete form from the visit. Or if a planned visit is in the next 6 mths, have the doctor complete the form. 4. We will ask your MD to send results of latest lab test performed on the child. If you have a copy send them. This info is all going to Dr. Karyl S Barron MD along with Kastner and the rest of his team. Wondering if anyone else here in the group who has visited NIH and not received a genetic diagnosis yet... received this!! We are going to complete it and return. Good to see they are checking on the kids God Bless Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi Fran! We got a copy. It was a very frustrating reminder that after 12 years, even though Dr. Kastner has insisted to me that he considers PJ to have FMF, that we really do not have a firm diagnosis. Peej is having a rough time just now, not with episodes, the Colchicine keeps them at bay but with his joint pain. He can't get through a trip to the grocery store without having to stop at each aisle and sit on the floor for a few minutes. It's back to the research for me, trying to find something that will help him with the pain. He's having a hard time sleeping at night because of it. I am so frustrated, kids aren't supposed to have to live like this. Pat __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Fran, We are scheduled to go next month to NIH for the first time. Are we suppose to fill out this questionnaire? Or is it for patients who have already been seen by Dr. Kastner and his group? Thanks. Beverly Dettis NIH new study Hello, Today I received a new survey from NIH. It specifically is for Periodic Fever Patients who have been seen in the clinic and who do not have a genetic diagnosis. It is part of their study on the natural history of periodic fever in children and they are requesting participation. There is an intro letter and inside a package with several items to help them collect data on the current status of the children. 1. Interval History Form: this is for the parent to complete. (or adult periodic fever pt) It is to be sent back when completed. 2. A request for medical info from personal physician: the letter authorizes private MD to release info on our children to NIH. It is to be sent to the MD or taken to him. 3. Physical Exam Form and second prepaid envelope. This is for the child's physician to complete. Needs to go along with # 2 above. If physical done in past 6 months, MD can complete form from the visit. Or if a planned visit is in the next 6 mths, have the doctor complete the form. 4. We will ask your MD to send results of latest lab test performed on the child. If you have a copy send them. This info is all going to Dr. Karyl S Barron MD along with Kastner and the rest of his team. Wondering if anyone else here in the group who has visited NIH and not received a genetic diagnosis yet... received this!! We are going to complete it and return. Good to see they are checking on the kids God Bless Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 I think it's for parents who have already been there. A follow up survey... Tracey On Thursday, August 18, 2005, at 12:23 AM, Beverly Dettis wrote: > Fran, > > We are scheduled to go next month to NIH for the first time. Are we > suppose > to fill out this questionnaire? Or is it for patients who have > already been > seen by Dr. Kastner and his group? > > Thanks. > > Beverly Dettis > > > NIH new study > > Hello, > Today I received a new survey from NIH. It specifically is for Periodic > Fever Patients who have been seen in the clinic and who do not have a > genetic diagnosis. It is part of their study on the natural history of > periodic fever in children and they are requesting participation. > > There is an intro letter and inside a package with several items to > help > them collect data on the current status of the children. > > 1. Interval History Form: this is for the parent to complete. (or adult > periodic fever pt) It is to be sent back when completed. > > 2. A request for medical info from personal physician: the letter > authorizes > private MD to release info on our children to NIH. It is to be sent to > the > MD or taken to him. > > 3. Physical Exam Form and second prepaid envelope. This is for the > child's > physician to complete. Needs to go along with # 2 above. If physical > done in > past 6 months, MD can complete form from the visit. Or if a planned > visit is > in the next 6 mths, have the doctor complete the form. > > 4. We will ask your MD to send results of latest lab test performed on > the > child. If you have a copy send them. > > This info is all going to Dr. Karyl S Barron MD along with Kastner and > the > rest of his team. > > Wondering if anyone else here in the group who has visited NIH and not > received a genetic diagnosis yet... received this!! > We are going to complete it and return. > Good to see they are checking on the kids > God Bless > Fran > > > > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 The survey is for existing patients and those people will receive an invitation by mail. This is a follow-up of their patients that have already been seen. Once a patient then you will be asked to participate in future surveys is what I have been told. God Bless and BEST of Luck. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Fran, We are scheduled to go next month to NIH for the first time. Are we suppose to fill out this questionnaire? Or is it for patients who have already been seen by Dr. Kastner and his group? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi Fran and all! I just got off the phone with Beverly at NIH, she heard that I was making Pj's appointment with the appointment desk and asked to speak with me directly. Apparently, the appointment desk has been overbooking Dr. Kastner and staff so she requested that we make all periodic fever study appointments directly through her. That way people making travel arrangements for appointments don't wind up getting rescheduled at the 11th hour! I asked her about the survey and she had some pretty neat information. She said that recently they had taken a random sampling of 10 kids in the study who had not been diagnosed with either Pfapa or a genetic disorder, got the updated profiles filled out and were able to definitively diagnose 4 of those kids based on the profiles and latest info. That is the reason for the request of updated profiles on all of our undiagnosed kids. I got the impression that they wanted to get these back as soon as possible so as to re-review everyone. The sooner they diagnose these kids, the sooner they can be getting appropriate treatments. Pat, mom to PJ, 12yo, Clinical FMF, Virginia __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 > Hi Fran! We got a copy. It was a very frustrating reminder that after 12 years, even though Dr. Kastner has insisted to me that he considers PJ to have FMF, that we really do not have a firm diagnosis. > Peej is having a rough time just now, not with episodes, the Colchicine keeps them at bay but with his joint pain. He can't get through a trip to the grocery store without having to stop at each aisle and sit on the floor for a few minutes. It's back to the research for me, trying to find something that will help him with the pain. He's having a hard time sleeping at night because of it. I am so frustrated, kids aren't supposed to have to live like this. > > Pat > Hi Pat, Sorry to hear about the struggles for PJ. I have empathy and feel saddly relieved that my child isn't the only one not making the rounds at the grocery store. I worry often that maybe I'm not pushing her hard enough, but I don't think so, six year olds usually can't stand being caged in a cart. It's heart breaking, says her legs hurt after more than an isle at the store. Thankfully I can still lift her into the cart, and out, and in, and out....she likes to try... The Maclaren Stroller is also a help. moans some nights in her sleep and at times is awoken from the pain in her hips/legs. Hang in There, I think of you and PJ often. Sincerely Walton 6 ? Vancouver Isl Canada > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 > Hi Fran! We got a copy. It was a very frustrating reminder that after 12 years, even though Dr. Kastner has insisted to me that he considers PJ to have FMF, that we really do not have a firm diagnosis. > Peej is having a rough time just now, not with episodes, the Colchicine keeps them at bay but with his joint pain. He can't get through a trip to the grocery store without having to stop at each aisle and sit on the floor for a few minutes. It's back to the research for me, trying to find something that will help him with the pain. He's having a hard time sleeping at night because of it. I am so frustrated, kids aren't supposed to have to live like this. > > Pat > Hi Pat, Sorry to hear about the struggles for PJ. I have empathy and feel saddly relieved that my child isn't the only one not making the rounds at the grocery store. I worry often that maybe I'm not pushing her hard enough, but I don't think so, six year olds usually can't stand being caged in a cart. It's heart breaking, says her legs hurt after more than an isle at the store. Thankfully I can still lift her into the cart, and out, and in, and out....she likes to try... The Maclaren Stroller is also a help. moans some nights in her sleep and at times is awoken from the pain in her hips/legs. Hang in There, I think of you and PJ often. Sincerely Walton 6 ? Vancouver Isl Canada > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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