Guest guest Report post Posted January 11, 2005 That would be great. Hope everything goes well. Tracey On Tuesday, January 11, 2005, at 03:00 PM, Fran Bulone wrote: > Tracey, > ph and I will be heading to NIH on Monday... appointment is on > Tuesday. > > I will let you know how it goes. > Fran > > > We just got our apt. set for NIH. We will be going there March 1st to > see Dr. Kastner. > Tracey > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 11, 2005 Tracey, ph and I will be heading to NIH on Monday... appointment is on Tuesday. I will let you know how it goes. Fran We just got our apt. set for NIH. We will be going there March 1st to see Dr. Kastner. Tracey Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 12, 2005 Hi, Check out my post from 1/3/05 I'm pressed for time so i can not retype right now! TRacy NIH Does anyone know how far the Baltimore airport is from the Children's inn? We will be flying into the Baltimore airport. Thanks, Tracey ------------------------------------------------------------------------------ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 13, 2005 Hey Tracey, We are heading out Monday Morning... The Childrens Inn Rep JUST called me to see if we were coming as scheduled!! I will let you know how it goes when we get back late Wed. How is Maddie?? I have been thinking of you... God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 13, 2005 Sorry, for some reason I thought you just got back today. Maddie's doing great. She hasn't had fever since Oct. 20th. I know it's not long but it's long for her. She's only had the one fever in Oct. since having her tonsils removed in Aug. She burnt her face on a pan tonight so we are dealing with that now. I'll be thinking about you on your trip and I hope everything goes well. Tracey On Thursday, January 13, 2005, at 07:19 PM, Fran Bulone wrote: > Hey Tracey, > We are heading out Monday Morning... The Childrens Inn Rep JUST called > me to > see if we were coming as scheduled!! I will let you know how it goes > when we > get back late Wed. > > How is Maddie?? I have been thinking of you... > God Bless, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 You need to go to NIH... You pay for your own airfare and the medical expenses are covered through the research study... Also you can stay at the Children's Inn directly across the street which is wonderful. As for follow ups... that depends on the genetic study results. If the child has a genetic disorder they will want you to return... the people here who have children diagnosed with genetic disorders can go into the specifics for their children. If no mutation is found, Dr Kastner said he would like to see ph every 6 months or once a year to gather information on his fevers and other symptoms... and re-run DNA studies on any new mutations found. Again they will cover hotel and medical expenses.... When you are in the study MORE SPECIFIC DNA mutations are screened for and because of regulations of research studies they have to be ordered by the research doctor. Hope that helps, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Betsy, We have an apt. on March 1st and we first sent out info. in to be considered in Aug. (about 8 months) It takes a while. Tracey On Tuesday, January 25, 2005, at 03:39 PM, Betsy Bress wrote: > Fran, > > Thanks so much for the information! I'm so happy that these studies > are > being conducted; I feel like we'd do anything at this point to make it > happen. It's funny in a way - is a historian at heart, and > he's > been asking to go to DC for a while now. He wants to go to the > sonian > and Lincoln Memorial. I suppose that would help buffer the news that > he had > to spend a day at a hospital, blood draws, etc. > > Do you know how far in advance are they scheduling people? > > > Betsy > Re: NIH > > You need to go to NIH... You pay for your own airfare and the medical > expenses are covered through the research study... Also you can stay > at the > Children's Inn directly across the street which is wonderful. > > As for follow ups... that depends on the genetic study results. If the > child > has a genetic disorder they will want you to return... the people here > who > have children diagnosed with genetic disorders can go into the > specifics for > their children. > > If no mutation is found, Dr Kastner said he would like to see ph > every 6 > months or once a year to gather information on his fevers and other > symptoms... and re-run DNA studies on any new mutations found. Again > they > will cover hotel and medical expenses.... > > When you are in the study MORE SPECIFIC DNA mutations are screened for > and > because of regulations of research studies they have to be ordered by > the > research doctor. > > Hope that helps, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Betsy, We have an apt. on March 1st and we first sent out info. in to be considered in Aug. (about 8 months) It takes a while. Tracey On Tuesday, January 25, 2005, at 03:39 PM, Betsy Bress wrote: > Fran, > > Thanks so much for the information! I'm so happy that these studies > are > being conducted; I feel like we'd do anything at this point to make it > happen. It's funny in a way - is a historian at heart, and > he's > been asking to go to DC for a while now. He wants to go to the > sonian > and Lincoln Memorial. I suppose that would help buffer the news that > he had > to spend a day at a hospital, blood draws, etc. > > Do you know how far in advance are they scheduling people? > > > Betsy > Re: NIH > > You need to go to NIH... You pay for your own airfare and the medical > expenses are covered through the research study... Also you can stay > at the > Children's Inn directly across the street which is wonderful. > > As for follow ups... that depends on the genetic study results. If the > child > has a genetic disorder they will want you to return... the people here > who > have children diagnosed with genetic disorders can go into the > specifics for > their children. > > If no mutation is found, Dr Kastner said he would like to see ph > every 6 > months or once a year to gather information on his fevers and other > symptoms... and re-run DNA studies on any new mutations found. Again > they > will cover hotel and medical expenses.... > > When you are in the study MORE SPECIFIC DNA mutations are screened for > and > because of regulations of research studies they have to be ordered by > the > research doctor. > > Hope that helps, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Fran, Thanks so much for the information! I'm so happy that these studies are being conducted; I feel like we'd do anything at this point to make it happen. It's funny in a way - is a historian at heart, and he's been asking to go to DC for a while now. He wants to go to the sonian and Lincoln Memorial. I suppose that would help buffer the news that he had to spend a day at a hospital, blood draws, etc. Do you know how far in advance are they scheduling people? Betsy Re: NIH You need to go to NIH... You pay for your own airfare and the medical expenses are covered through the research study... Also you can stay at the Children's Inn directly across the street which is wonderful. As for follow ups... that depends on the genetic study results. If the child has a genetic disorder they will want you to return... the people here who have children diagnosed with genetic disorders can go into the specifics for their children. If no mutation is found, Dr Kastner said he would like to see ph every 6 months or once a year to gather information on his fevers and other symptoms... and re-run DNA studies on any new mutations found. Again they will cover hotel and medical expenses.... When you are in the study MORE SPECIFIC DNA mutations are screened for and because of regulations of research studies they have to be ordered by the research doctor. Hope that helps, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Fran, Thanks so much for the information! I'm so happy that these studies are being conducted; I feel like we'd do anything at this point to make it happen. It's funny in a way - is a historian at heart, and he's been asking to go to DC for a while now. He wants to go to the sonian and Lincoln Memorial. I suppose that would help buffer the news that he had to spend a day at a hospital, blood draws, etc. Do you know how far in advance are they scheduling people? Betsy Re: NIH You need to go to NIH... You pay for your own airfare and the medical expenses are covered through the research study... Also you can stay at the Children's Inn directly across the street which is wonderful. As for follow ups... that depends on the genetic study results. If the child has a genetic disorder they will want you to return... the people here who have children diagnosed with genetic disorders can go into the specifics for their children. If no mutation is found, Dr Kastner said he would like to see ph every 6 months or once a year to gather information on his fevers and other symptoms... and re-run DNA studies on any new mutations found. Again they will cover hotel and medical expenses.... When you are in the study MORE SPECIFIC DNA mutations are screened for and because of regulations of research studies they have to be ordered by the research doctor. Hope that helps, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Thanks. That's about what I had figured.... Re: NIH > > You need to go to NIH... You pay for your own airfare and the medical > expenses are covered through the research study... Also you can stay > at the > Children's Inn directly across the street which is wonderful. > > As for follow ups... that depends on the genetic study results. If the > child > has a genetic disorder they will want you to return... the people here > who > have children diagnosed with genetic disorders can go into the > specifics for > their children. > > If no mutation is found, Dr Kastner said he would like to see ph > every 6 > months or once a year to gather information on his fevers and other > symptoms... and re-run DNA studies on any new mutations found. Again > they > will cover hotel and medical expenses.... > > When you are in the study MORE SPECIFIC DNA mutations are screened for > and > because of regulations of research studies they have to be ordered by > the > research doctor. > > Hope that helps, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Thanks. That's about what I had figured.... Re: NIH > > You need to go to NIH... You pay for your own airfare and the medical > expenses are covered through the research study... Also you can stay > at the > Children's Inn directly across the street which is wonderful. > > As for follow ups... that depends on the genetic study results. If the > child > has a genetic disorder they will want you to return... the people here > who > have children diagnosed with genetic disorders can go into the > specifics for > their children. > > If no mutation is found, Dr Kastner said he would like to see ph > every 6 > months or once a year to gather information on his fevers and other > symptoms... and re-run DNA studies on any new mutations found. Again > they > will cover hotel and medical expenses.... > > When you are in the study MORE SPECIFIC DNA mutations are screened for > and > because of regulations of research studies they have to be ordered by > the > research doctor. > > Hope that helps, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2005 Betsy, I contacted NIH in June when ph turned 5... I got a call in December and scheduled for last week... So it took us 6 months from the initial call. I submitted letters from our specialist that were sent to our ped over the 3 yrs he consulted with ph. They were summaries of his condition and included diagnostic work up reviews. They accepted that.... so I faxed that the day after Janet and I spoke. We did not hear a word until Beverly the new nurse called us in Dec.... She offered last week and I jumped on it.... The wait I am told by Dr Kastner is between 6-10 months. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 8, 2005 Hi Tracey, The suspense is killing me!!! What happened at the NIH? What did Dr. kastner say? What tests did he take? Did you have fun at the Children's Inn? Tell me the details!!! Wilke Mom to HIDS kids Hana 4 and Georgia 2 Vancouver, BC > Hi, > We got back from NIH last night. Dr. Kastner was great and we really > enjoyed meeting with him. Maddie had a great time at the Children's Inn > and didn't want to leave. > Tracey > mom to Maddie, age 6 !!!!! > Brent, age 9 > League City, TX Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 8, 2005 Hi, Maddie loved the Inn. She loved the craft room and play room most of all. Dr. Kastner repeated all the genetic test and included one I hadn't heard of. C something? Took 9 tubes of blood and did a urine test. He said she probably has and we will continue to keep track of her for now. I said I would try the prednisone for the next fever. And I will keep track of the " feverless " episodes as well. If they continue we might try other meds. It was alittle intimidating when he came in with 6 or 7 other doctors. We had a great time and are so glad we went even though Maddie's been fever free for 4 months and counting. Tracey On Tuesday, March 8, 2005, at 05:37 PM, ltwilke wrote: > > Hi Tracey, > The suspense is killing me!!! What happened at the NIH? What did Dr. > kastner say? What tests did he take? Did you have fun at the > Children's Inn? Tell me the details!!! > Wilke > Mom to HIDS kids Hana 4 and Georgia 2 > Vancouver, BC > > > > Hi, > > We got back from NIH last night. Dr. Kastner was great and we really > > enjoyed meeting with him. Maddie had a great time at the Children's > Inn > > and didn't want to leave. > > Tracey > > mom to Maddie, age 6 !!!!! > > Brent, age 9 > > League City, TX > > > > <image.tiff> > > <image.tiff> > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 8, 2005 Hi, Maddie loved the Inn. She loved the craft room and play room most of all. Dr. Kastner repeated all the genetic test and included one I hadn't heard of. C something? Took 9 tubes of blood and did a urine test. He said she probably has and we will continue to keep track of her for now. I said I would try the prednisone for the next fever. And I will keep track of the " feverless " episodes as well. If they continue we might try other meds. It was alittle intimidating when he came in with 6 or 7 other doctors. We had a great time and are so glad we went even though Maddie's been fever free for 4 months and counting. Tracey On Tuesday, March 8, 2005, at 05:37 PM, ltwilke wrote: > > Hi Tracey, > The suspense is killing me!!! What happened at the NIH? What did Dr. > kastner say? What tests did he take? Did you have fun at the > Children's Inn? Tell me the details!!! > Wilke > Mom to HIDS kids Hana 4 and Georgia 2 > Vancouver, BC > > > > Hi, > > We got back from NIH last night. Dr. Kastner was great and we really > > enjoyed meeting with him. Maddie had a great time at the Children's > Inn > > and didn't want to leave. > > Tracey > > mom to Maddie, age 6 !!!!! > > Brent, age 9 > > League City, TX > > > > <image.tiff> > > <image.tiff> > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 6, 2006 Hi I am Sacora I am going March 28 until the 31. When are you going? Bisson <proudmom@...> wrote: was anyone else going for March7? check out my tupperware site http://my.tupperware.ca/vanessabisson Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 6, 2006 March 7 Just trying to figure out where to fly into lol Re: NIH Hi I am Sacora I am going March 28 until the 31. When are you going? Bisson <proudmom@...> wrote: was anyone else going for March7? check out my tupperware site http://my.tupperware.ca/vanessabisson Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 6, 2006 They wanted me there on the 1 and 2 but that was to soon so I picked the 29 and 30. How many days does you child have to be seen? Mine they said 2 day and I don't know why.There was 3 airports I seen but I dont know names sorry. Sacora Bisson <proudmom@...> wrote: March 7 Just trying to figure out where to fly into lol Re: NIH Hi I am Sacora I am going March 28 until the 31. When are you going? Bisson <proudmom@...> wrote: was anyone else going for March7? check out my tupperware site http://my.tupperware.ca/vanessabisson Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 6, 2006 >>> was anyone else going for March7? check out my tupperware site http://my.tupperware.ca/vanessabisson >>> I am going in March... arrive 20th leave 25. Fran PS PLEASE DO NOT SOLICIT AT THIS SITE. Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 6, 2006 sorry ..its just attached to my emails.. ill remember to delete it .. when i send! RE: NIH >>> was anyone else going for March7? check out my tupperware site http://my.tupperware.ca/vanessabisson >>> I am going in March... arrive 20th leave 25. Fran PS PLEASE DO NOT SOLICIT AT THIS SITE. Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 17, 2006 Has anyone else been contacted by NIH regarding a pediatric allergy study?? I just received a phone call from them wanting to know if we wanted to participate in an allergy study while we were there for the study. Just wondering if they contacted anyone else :-) (SWFL) Mother of Jarrod (3) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 17, 2006 MERRY No but do you have a number or anything cause Nicolas has bad allergies and has to take shots every week and asthma. We are going March 28 to the NIH when are you going? Could you please send me the information you recieved were I can check into that?Have you been there(NIH) before or are you going for the first time?Since were coming from Oregon to go there I want to get what I can done why were there if you know what I mean a 10hour flight is gona be exausting enough especially on my son.You can email me personally at sacoracasselman@... if you want to be private. Thank you merryms@... wrote: Has anyone else been contacted by NIH regarding a pediatric allergy study?? I just received a phone call from them wanting to know if we wanted to participate in an allergy study while we were there for the study. Just wondering if they contacted anyone else :-) (SWFL) Mother of Jarrod (3) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2006 I do not have a number. I was contacted by the Pediatric Allergies people because Dr. Kastner referred my son as a potential candidate. This is the first time we are going to NIH. We are supposed to be there on Mar 14. (SWFL) Mother of Jarrod (3) On Fri, 17 Feb 2006 13:46:55 -0800 (PST) Sacora Casselman <sacoracasselman@...> writes: MERRY No but do you have a number or anything cause Nicolas has bad allergies and has to take shots every week and asthma. We are going March 28 to the NIH when are you going? Could you please send me the information you recieved were I can check into that?Have you been there(NIH) before or are you going for the first time?Since were coming from Oregon to go there I want to get what I can done why were there if you know what I mean a 10hour flight is gona be exausting enough especially on my son.You can email me personally at sacoracasselman@... if you want to be private. Thank you merryms@... wrote: Has anyone else been contacted by NIH regarding a pediatric allergy study?? I just received a phone call from them wanting to know if we wanted to participate in an allergy study while we were there for the study. Just wondering if they contacted anyone else :-) (SWFL) Mother of Jarrod (3) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2006 Well was saying that my son will have a few consults so maybe it will be one but i will have to check with her to see cause that would be great if we could see one too. What all are they doing for your son have you got your schedule yet? I go the 28 it would be so nice to meet someone from this group why I was there. Let me know what goes on at your appointment. Hope all goes good for you. Sacora Mom of Nicolas 12 Redmond OR merryms@... wrote: I do not have a number. I was contacted by the Pediatric Allergies people because Dr. Kastner referred my son as a potential candidate. This is the first time we are going to NIH. We are supposed to be there on Mar 14. (SWFL) Mother of Jarrod (3) On Fri, 17 Feb 2006 13:46:55 -0800 (PST) Sacora Casselman <sacoracasselman@...> writes: MERRY No but do you have a number or anything cause Nicolas has bad allergies and has to take shots every week and asthma. We are going March 28 to the NIH when are you going? Could you please send me the information you recieved were I can check into that?Have you been there(NIH) before or are you going for the first time?Since were coming from Oregon to go there I want to get what I can done why were there if you know what I mean a 10hour flight is gona be exausting enough especially on my son.You can email me personally at sacoracasselman@... if you want to be private. Thank you merryms@... wrote: Has anyone else been contacted by NIH regarding a pediatric allergy study?? I just received a phone call from them wanting to know if we wanted to participate in an allergy study while we were there for the study. Just wondering if they contacted anyone else :-) (SWFL) Mother of Jarrod (3) Quote Share this post Link to post Share on other sites
