Guest guest Report post Posted July 7, 2006 That would be wonderful lori Re: NIH Hi , Hannah has an appointment at NIH on August 1 too. Are you staying at the Children's Inn? It would be nice to meet. Carey mom to Hannah Rose (Clinical HIDS) -- In , Bombardier <petish44@...> wrote: > > Hey! I wanna be at that party!! No, not really I don't! We just spent the past several hours at NIH today and we go back again on the 27th and again on Aug. 1st. That's enough party for me! > > Quick question..PJ is pretty constipated most of the time and today, based on last labs, he HAS to start on some iron. Dr. Coburn recommended Geritol but won't the iron make the constipation worse? And does it taste as bad as it smelled way back when my mother drank it? When I asked Dr. Coburn about that, she suggested adding Metamucil to the mix. > The one time that PJ complained about having this disease, he asked me why he had to have a disease that made him feel like an 80 year old. Metamucil?? Geritol?? Now he'll really feel like an 80 year old! LOL > > We have to go back so soon because PJ is going to be one of 3 FMF patients that are taking part in a study that Dr. Coburn and another fellow are doing, something to do with neutrophils and the role they play in the inflammation process specific to FMF patients. When she asked if we would be willing to be a part of the study, Pj was willing and I was thrilled. It was really cool, it felt like we were taking an active role in helping to find answers to the causes and treatments of these periodic fevers. It made me feel so hopeful, listening to her explain about her study. She was so enthusiastic...I just kept thinking to myself, these people are so commited to helping our kids, to finding out about these diseases and possibly how to cure them! > > I am so thankful. God put us in this area, so close to this facility, for a reason! We are so blessed! > > Pat, mom to PJ, 13yo, FMF > > > --------------------------------- > Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2ยข/min or less. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 27, 2006 Nino and I will be there that week. Lori --- Bisson <proudmom@...> wrote: > We are at NIH from the 6-10 of August.. hoping > someone else is going > mom to kiara 5 > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 27, 2006 Yayyy Id love to meet you!!! I fly in the evening of the 6th.. Re: NIH Nino and I will be there that week. Lori --- Bisson <proudmom@...> wrote: > We are at NIH from the 6-10 of August.. hoping > someone else is going > mom to kiara 5 > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 27, 2006 oh and Lori... I dont have nothing to do on the 7th.. we see the docs on t he 8th and have the 9th free so far and fly out after lunch on the 10th Re: NIH Nino and I will be there that week. Lori --- Bisson <proudmom@...> wrote: > We are at NIH from the 6-10 of August.. hoping > someone else is going > mom to kiara 5 > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 28, 2006 not sure of our schedule yet...Nikki is on vacation and this is Nino's first time returning in three weeks...I will leep you posted. --- Bisson <proudmom@...> wrote: > oh and Lori... > I dont have nothing to do on the 7th.. we see the > docs on t he 8th and have the 9th free so far and > fly out after lunch on the 10th > Re: NIH > > > Nino and I will be there that week. Lori > > --- Bisson <proudmom@...> wrote: > > > We are at NIH from the 6-10 of August.. hoping > > someone else is going > > mom to kiara 5 > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2006 Do we know why it takes longer for others and not so long for some? I was shocked that it took use just 2 months to get in. I was prepared to wait a year. Our ID doc at Vanderbilt sent in all our info. It took them a while to get a response from NIH, but when they did, I had someone call me a month from sending in my last piece of application. Zachary isn't especially sick, just turned 5 yrs and fevering since 4 mos old. Anyone know the protocol for when they call? Our appointment is this Monday and I'm starting to feel quite anxious. Also, how long does it take to get the results from the genetic tests? Deanna mom to Zachary, Huntsville, AL > > > Hi all > I just wanted to let some of you know that I checked with Beverly at NIH about my daughters application that was submitted back in about early May (I think). She is still in the pre-review stage. Should still be about a month until a decision is made and then about a year until she can be scheduled IF she is selected. So that takes total wait time to over a year and a half for us. Just thought I would share that with the group in case any of you have started the process - don't be sitting by the phone waiting for a call! > Lori > mom to four daughters including (2) ?PFS > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2006 The request from Vanderbilt may have helped since the initial team of docs were from there... ( ) Depending on the background of the doctors requesting and who knows who may also play a role... Symptoms and the way they are described helps too. There is NO specific protocol... if Kastner reveiws a file and feels the need to expedite.. it gets expedited. He does review EACH medical file once they are completed... Not to much help... Sorry Oh... the actual visit is really not bad. Just remember to bring something to occupy your son... especially when ALL the doctors come into the room for the interview at the end of the day. That is when ph sort of " loses " it... and needs to be occupied. I will bring his Gameboy and his NANO next visit... Otherwise if you stay at the INN it is wonderful... and the consult with the fellow is relatively benign. BRING a list of questions and a notebook to jot down things... When NIH does the genetic studies.. it takes at LEAST 8 weeks for the results. Maybe longer. MAKE sure you sign a Medical Release at the end of the day with Beverly so she can AUTOMATICALLY send you ALL the results. Check off ALL lab studies and all Genetic studies... If you want the consultation... write that on the same form. Then you will get the medical records as soon as they become available. God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2006 We had our testing done at the NIH in January 2006 and was told it would take 3 months for the results. I called exactly three months laster and only the FMF results had come back. It took three more months until I heard about the HIDs and TRAPS results, in fact, they called just a few days before our follow up visit. So for us it took some time . . . Also as for getting into the NIH - we were called only six weeks after mailing in our application and our appointment was about 2 weeks after that. I have no idea how that happened, but Nicki Plass, who was doing the scheduling at the time, said it was luck. My son (Jonah) was four at the time, had been fevering since he was around one and had no other symptoms. All in all, he was not a particularly intriging case. So I am at a loss as to how this process works. But from meeting with Dr. Kastner in July, I got the definite impression that they want as many children in the study as possible. So I would not necessarily worry about " getting selected. " That is my two cents, for what it is worth. in Tampa. Mom to Jonah, 5 (TRAPS) > > > > > > Hi all > > I just wanted to let some of you know that I checked with Beverly at > NIH about my daughters application that was submitted back in about > early May (I think). She is still in the pre-review stage. Should > still be about a month until a decision is made and then about a year > until she can be scheduled IF she is selected. So that takes total > wait time to over a year and a half for us. Just thought I would share > that with the group in case any of you have started the process - > don't be sitting by the phone waiting for a call! > > Lori > > mom to four daughters including (2) ?PFS > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2006 Yes, our ID doc works for Dr and I know he got her help when contacting the NIH. Thanks for all the info about the visit. It seems quite overwhelming reading about all the fellows and what not. I'm mostly anxious about hopefully getting to the bottom of Zachary's fevers since his doesn't fit the common syndrome. Deanna mom to Zachary, Huntsville, AL > > The request from Vanderbilt may have helped since the initial team of docs were from there... ( ) > > Depending on the background of the doctors requesting and who knows who may also play a role... Symptoms and the way they are described helps too. > > There is NO specific protocol... if Kastner reveiws a file and feels the need to expedite.. it gets expedited. He does review EACH medical file once they are completed... > > Not to much help... > Sorry > > Oh... the actual visit is really not bad. Just remember to bring something to occupy your son... especially when ALL the doctors come into the room for the interview at the end of the day. That is when ph sort of " loses " it... and needs to be occupied. I will bring his Gameboy and his NANO next visit... > > Otherwise if you stay at the INN it is wonderful... and the consult with the fellow is relatively benign. BRING a list of questions and a notebook to jot down things... > > When NIH does the genetic studies.. it takes at LEAST 8 weeks for the results. Maybe longer. MAKE sure you sign a Medical Release at the end of the day with Beverly so she can AUTOMATICALLY send you ALL the results. Check off ALL lab studies and all Genetic studies... If you want the consultation... write that on the same form. Then you will get the medical records as soon as they become available. > > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr CIAS1 mutation 11/05 > Waxhaw NC > / > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2006 Wow Lori, that is the LONGEST wait I have heard of in over 6 years!! Did you ask why? As you can see if you follow the threads or read the archives it averages 5-6 months to get a call and then usually within 6-12 weeks for an appointment. This is the longest average. We have seen many many people get called a little sooner... Did your doctor send in a formal request with the pertinent medical documentation? Just wondering... because I have not heard of 6 months for an appointment AFTER the medical review was done?? Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2006 I was also told by Beverly at NIH last week that current wait could be as long as 18 months (from the point that they receive paperwork)--we had sent Lily's in this last June. That was following their protocol instructions; medical documentation and requests from two doctors, all the appropriate paperwork. Who knows if it will end up being that long, but that's what she emailed me. (Lily, 6 1/2) Seattle On Oct 17, 2006, at 6:58 PM, Fran Bulone wrote: > Wow Lori, that is the LONGEST wait I have heard of in over 6 > years!! Did you ask why? As you can see if you follow the threads > or read the archives it averages 5-6 months to get a call and then > usually within 6-12 weeks for an appointment. This is the longest > average. > > We have seen many many people get called a little sooner... > > Did your doctor send in a formal request with the pertinent medical > documentation? Just wondering... because I have not heard of 6 > months for an appointment AFTER the medical review was done?? > Fran > Fran Bulone RN > Mom to ph 7yr CIAS1 mutation 11/05 > Waxhaw NC > / > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2006 WOW ... I guess with all the publicity they receive just alone here has set them back.... you can only see so many children in a day... and then again they only see new patients 3 days a week so that cuts back the amount of people they can evaluate! I still believe it is worth the wait!! But it deserves a WOW!! God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2006 Hi Fran This is what Beverly had emailed me. She said that 's chart is in " pre-review " and that it will be another month before a decision is made. Then based on that decision " it can be more than a year to get the appointment " . I have not responded to that email. I didn't know what to say. I have pursued a lot of this on my own. My daughters pediatrician has submitted paperwork but it was faxed directly there so I can't tell you exactly what was in it or what she had said. Of course since we submitted the paperwork my has started with the GI issues and also has been prescribed the singulair on which she is doing wonderfully. We are feverfree for over two months now but she still has the occasional GI stuff and also is in my opinion a very cranky two year old. I had emailed Beverly in the past about sending in the additional paperwork for the review but she didn't really answer and seemed that they didn't need it. She is followed by a very good rheumatologist who didn't seem to think we " needed " NIH but he doesn't discourage us from going. However we are not getting much headway getting the genetic testing paid for through our insurance and I really don't want a big bill if I don't need one (NIH is not that far from me in PA). This is why I got the ball rolling to start with. I am really thinking something other than for Sam because of the GI stuff and the fact that she has responded well to the Singulair, and so is her rheumatologist and at this point I would like an answer. I am happy with her current treatment but a few more answers would give me piece of mind. Thanks for listening! Lori Rodgers mom to four daughters including (2) ?PFS Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 18, 2006 I agree It sounded like that in august from Dr Kastner too WE got in only 6 weeks after too.. and had an appt 2 weeks later but couldn't go then.. went the next time Good luck getting in.. im sure you will Re: NIH We had our testing done at the NIH in January 2006 and was told it would take 3 months for the results. I called exactly three months laster and only the FMF results had come back. It took three more months until I heard about the HIDs and TRAPS results, in fact, they called just a few days before our follow up visit. So for us it took some time . . . Also as for getting into the NIH - we were called only six weeks after mailing in our application and our appointment was about 2 weeks after that. I have no idea how that happened, but Nicki Plass, who was doing the scheduling at the time, said it was luck. My son (Jonah) was four at the time, had been fevering since he was around one and had no other symptoms. All in all, he was not a particularly intriging case. So I am at a loss as to how this process works. But from meeting with Dr. Kastner in July, I got the definite impression that they want as many children in the study as possible. So I would not necessarily worry about " getting selected. " That is my two cents, for what it is worth. in Tampa. Mom to Jonah, 5 (TRAPS) > > > > > > Hi all > > I just wanted to let some of you know that I checked with Beverly at > NIH about my daughters application that was submitted back in about > early May (I think). She is still in the pre-review stage. Should > still be about a month until a decision is made and then about a year > until she can be scheduled IF she is selected. So that takes total > wait time to over a year and a half for us. Just thought I would share > that with the group in case any of you have started the process - > don't be sitting by the phone waiting for a call! > > Lori > > mom to four daughters including (2) ?PFS > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 20, 2006 We got our call from Beverly today, and will be going to NIH December 4. Anyone else going to be there then? It sounds like the wait time depends on the doctor you see. I can't remember the name she gave me (I was out and she called on my cell phone, and I had no way to write it down. I think it sounded like an Indian name perhaps.) I asked if we would see Dr. Kastner at all, and she said no, and that it would be another eight month wait at least if we wanted to see him. He had reviewed 's chart and assigned him to this other doctor who is working with the part of the study. So maybe kids with different symptoms get assigned to different doctors who have different length backlogs? We submitted paperwork in March, so it will be nine months for us from application to appointment. We will also have our six-year-old with us. Does the Children's Inn provide any activities for siblings during the appointment, or will he need to be with us the whole time? I'd be interested in hearing how you managed from anyone else who has been through this with another child along (off list, if you don't think the whole group would be interested, or feel free to send it to the list if you want). We are also working with Angel Flight to get there, so I would also be interested in hearing from anyone who has had that experience. We're coming from Michigan. I'm a little nervous about flying out of Michigan on a tiny plane in December of all months (oh, well, probably better than February!) Anyway, it was really exciting to finally get the call! - Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 20, 2006 Dr Chitkara is wonderful. she is the study doctor. Re: Re: NIH We got our call from Beverly today, and will be going to NIH December 4. Anyone else going to be there then? It sounds like the wait time depends on the doctor you see. I can't remember the name she gave me (I was out and she called on my cell phone, and I had no way to write it down. I think it sounded like an Indian name perhaps.) I asked if we would see Dr. Kastner at all, and she said no, and that it would be another eight month wait at least if we wanted to see him. He had reviewed 's chart and assigned him to this other doctor who is working with the part of the study. So maybe kids with different symptoms get assigned to different doctors who have different length backlogs? We submitted paperwork in March, so it will be nine months for us from application to appointment. We will also have our six-year-old with us. Does the Children's Inn provide any activities for siblings during the appointment, or will he need to be with us the whole time? I'd be interested in hearing how you managed from anyone else who has been through this with another child along (off list, if you don't think the whole group would be interested, or feel free to send it to the list if you want). We are also working with Angel Flight to get there, so I would also be interested in hearing from anyone who has had that experience. We're coming from Michigan. I'm a little nervous about flying out of Michigan on a tiny plane in December of all months (oh, well, probably better than February!) Anyway, it was really exciting to finally get the call! - Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 20, 2006 , Happy to hear you are heading to NIH! The Children's Inn does NOT provide childcare for your children... not any... not the child being seen nor any other children you decide to bring. There are lots of fun things for them to do however when you go to the clinic... you need to bring everyone! LOL I only have ph so that was not an issue for me... from our many visits though most people that do visit either do not bring other kids and the few that did... some had a spouse who did not visit, others had a grandparent that waited at the Inn with other kids... I would like to hear if others in our group brought other children with them and what they did with them especially younger children. Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2006 WE JUST now got in from our trip to NIH. We saw Dr Chitakara (sp?). SHe was fabulous, but the trip was a little underwhelming. Not that it was bad, but I gave more info than I received. But all in all we got the genetic tests done and that was the main thing. I had no idea that we had to collect blood at home too though with the next fever (which ours won't be til Feb as we are on 'break'). Anyhow, the Children's Inn was INDREDIBLE and we actually got to meet a family with a son with PFS that when she emails me I will give her the link to this site. I briefly met a member here too. Anyway, we went with our whole family that includes Zachary who is 5, sister 3yrs and brother 16mos. My husband was with me though so he looked after the others. I did read something about being able to possibly set up care for siblings at the Inn...I would just ask about it. The appointment was easy and actually pretty quick once you got all registered. We had to be at Admissions at 7am, then after paperwork and questions we got sent up to the Peds Clinic. There, they were pretty efficient and quick....and there is a nice play space and fridge with juices in it. We saw Dr Chitakara 30mins earlier than our appointment time, they only saw one other lady who went over the study specifics and the paper that you get in the mail about it. Then they sent us for the blood draw with a thick EMLA cream on the arms. There were alot of viles, but not much went in each and it went very quick and Zachary actually said 'that was an easy lab, mom' when we were done. We were out of there by 11am at the latest. Deanna mom to Zachary, 5yrs, Huntsville, AL > > We got our call from Beverly today, and will be going to NIH December 4. > Anyone else going to be there then? > > It sounds like the wait time depends on the doctor you see. I can't remember > the name she gave me (I was out and she called on my cell phone, and I had > no way to write it down. I think it sounded like an Indian name perhaps.) I > asked if we would see Dr. Kastner at all, and she said no, and that it would > be another eight month wait at least if we wanted to see him. He had > reviewed 's chart and assigned him to this other doctor who is working > with the part of the study. So maybe kids with different symptoms get > assigned to different doctors who have different length backlogs? We > submitted paperwork in March, so it will be nine months for us from > application to appointment. > > We will also have our six-year-old with us. Does the Children's Inn provide > any activities for siblings during the appointment, or will he need to be > with us the whole time? I'd be interested in hearing how you managed from > anyone else who has been through this with another child along (off list, if > you don't think the whole group would be interested, or feel free to send it > to the list if you want). > > We are also working with Angel Flight to get there, so I would also be > interested in hearing from anyone who has had that experience. We're coming > from Michigan. I'm a little nervous about flying out of Michigan on a tiny > plane in December of all months (oh, well, probably better than February!) > > Anyway, it was really exciting to finally get the call! > > - > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 26, 2006 Deanna, Thanks so much for your post. Very helpful for us as we prepare to go to NIH Dec. 4. I've never heard anything about having to draw blood at home afterwards. Do you actually mean AT home yourself, or going to a local lab? How many times? I wonder if that is something everyone has to do. Do you have any contact information for the Children's Inn that might give us information about setting up care for a sibling? I would like my husband to be able to be at the appointments with us, but I would love for our six-year-old to have something else to do. It sounds like we will be on the same schedule as you (checking in at 7 for a 9:00 appointment). We're trying to figure out whether we can fly home the same day. If you were done by 11, that would seem like we could. I wonder what might happen that would make that different. Anyone else have any input on that? Thanks again. - On 10/26/06, deannabndr <mattdeanna@...> wrote: > > WE JUST now got in from our trip to NIH. We saw Dr Chitakara > (sp?). SHe was fabulous, but the trip was a little underwhelming. > Not that it was bad, but I gave more info than I received. But all > in all we got the genetic tests done and that was the main thing. I > had no idea that we had to collect blood at home too though with the > next fever (which ours won't be til Feb as we are on 'break'). > Anyhow, the Children's Inn was INDREDIBLE and we actually got to > meet a family with a son with PFS that when she emails me I will > give her the link to this site. I briefly met a member here too. > > Anyway, we went with our whole family that includes Zachary who is > 5, sister 3yrs and brother 16mos. My husband was with me though so > he looked after the others. I did read something about being able > to possibly set up care for siblings at the Inn...I would just ask > about it. The appointment was easy and actually pretty quick once > you got all registered. We had to be at Admissions at 7am, then > after paperwork and questions we got sent up to the Peds Clinic. > There, they were pretty efficient and quick....and there is a nice > play space and fridge with juices in it. We saw Dr Chitakara 30mins > earlier than our appointment time, they only saw one other lady who > went over the study specifics and the paper that you get in the mail > about it. Then they sent us for the blood draw with a thick EMLA > cream on the arms. There were alot of viles, but not much went in > each and it went very quick and Zachary actually said 'that was an > easy lab, mom' when we were done. We were out of there by 11am at > the latest. > > Deanna > mom to Zachary, 5yrs, > Huntsville, AL > > > > > > We got our call from Beverly today, and will be going to NIH > December 4. > > Anyone else going to be there then? > > > > It sounds like the wait time depends on the doctor you see. I > can't remember > > the name she gave me (I was out and she called on my cell phone, > and I had > > no way to write it down. I think it sounded like an Indian name > perhaps.) I > > asked if we would see Dr. Kastner at all, and she said no, and > that it would > > be another eight month wait at least if we wanted to see him. He > had > > reviewed 's chart and assigned him to this other doctor who > is working > > with the part of the study. So maybe kids with different > symptoms get > > assigned to different doctors who have different length backlogs? > We > > submitted paperwork in March, so it will be nine months for us from > > application to appointment. > > > > We will also have our six-year-old with us. Does the Children's > Inn provide > > any activities for siblings during the appointment, or will he > need to be > > with us the whole time? I'd be interested in hearing how you > managed from > > anyone else who has been through this with another child along > (off list, if > > you don't think the whole group would be interested, or feel free > to send it > > to the list if you want). > > > > We are also working with Angel Flight to get there, so I would > also be > > interested in hearing from anyone who has had that experience. > We're coming > > from Michigan. I'm a little nervous about flying out of Michigan > on a tiny > > plane in December of all months (oh, well, probably better than > February!) > > > > Anyway, it was really exciting to finally get the call! > > > > - > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 Re: 1st NIH Appointment Our appt at NIH was over at about 10am, and we brought our 4 yr old () and our 8 yr old. They are very friendly about siblings. I highly recommend bringing activities (coloring, etc) for the kids since there is a lot of grownup talking time. And surprisingly, we got our son's genetic test results back in under 2 months Patty Re: Re: NIH Deanna, Thanks so much for your post. Very helpful for us as we prepare to go to NIH Dec. 4. I've never heard anything about having to draw blood at home afterwards. Do you actually mean AT home yourself, or going to a local lab? How many times? I wonder if that is something everyone has to do. Do you have any contact information for the Children's Inn that might give us information about setting up care for a sibling? I would like my husband to be able to be at the appointments with us, but I would love for our six-year-old to have something else to do. It sounds like we will be on the same schedule as you (checking in at 7 for a 9:00 appointment). We're trying to figure out whether we can fly home the same day. If you were done by 11, that would seem like we could. I wonder what might happen that would make that different. Anyone else have any input on that? Thanks again. - On 10/26/06, deannabndr <mattdeanna@...> wrote: > > WE JUST now got in from our trip to NIH. We saw Dr Chitakara > (sp?). SHe was fabulous, but the trip was a little underwhelming. > Not that it was bad, but I gave more info than I received. But all > in all we got the genetic tests done and that was the main thing. I > had no idea that we had to collect blood at home too though with the > next fever (which ours won't be til Feb as we are on 'break'). > Anyhow, the Children's Inn was INDREDIBLE and we actually got to > meet a family with a son with PFS that when she emails me I will > give her the link to this site. I briefly met a member here too. > > Anyway, we went with our whole family that includes Zachary who is > 5, sister 3yrs and brother 16mos. My husband was with me though so > he looked after the others. I did read something about being able > to possibly set up care for siblings at the Inn...I would just ask > about it. The appointment was easy and actually pretty quick once > you got all registered. We had to be at Admissions at 7am, then > after paperwork and questions we got sent up to the Peds Clinic. > There, they were pretty efficient and quick....and there is a nice > play space and fridge with juices in it. We saw Dr Chitakara 30mins > earlier than our appointment time, they only saw one other lady who > went over the study specifics and the paper that you get in the mail > about it. Then they sent us for the blood draw with a thick EMLA > cream on the arms. There were alot of viles, but not much went in > each and it went very quick and Zachary actually said 'that was an > easy lab, mom' when we were done. We were out of there by 11am at > the latest. > > Deanna > mom to Zachary, 5yrs, > Huntsville, AL > > > > > > We got our call from Beverly today, and will be going to NIH > December 4. > > Anyone else going to be there then? > > > > It sounds like the wait time depends on the doctor you see. I > can't remember > > the name she gave me (I was out and she called on my cell phone, > and I had > > no way to write it down. I think it sounded like an Indian name > perhaps.) I > > asked if we would see Dr. Kastner at all, and she said no, and > that it would > > be another eight month wait at least if we wanted to see him. He > had > > reviewed 's chart and assigned him to this other doctor who > is working > > with the part of the study. So maybe kids with different > symptoms get > > assigned to different doctors who have different length backlogs? > We > > submitted paperwork in March, so it will be nine months for us from > > application to appointment. > > > > We will also have our six-year-old with us. Does the Children's > Inn provide > > any activities for siblings during the appointment, or will he > need to be > > with us the whole time? I'd be interested in hearing how you > managed from > > anyone else who has been through this with another child along > (off list, if > > you don't think the whole group would be interested, or feel free > to send it > > to the list if you want). > > > > We are also working with Angel Flight to get there, so I would > also be > > interested in hearing from anyone who has had that experience. > We're coming > > from Michigan. I'm a little nervous about flying out of Michigan > on a tiny > > plane in December of all months (oh, well, probably better than > February!) > > > > Anyway, it was really exciting to finally get the call! > > > > - > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 I am new to this illness and group so excuse me if I sound dumb, but what does NIH mean? where is it? It seems llike alot of people bring their children there why does it know alot about this illness info please P Manning <pmanning2000@...> wrote: Re: 1st NIH Appointment Our appt at NIH was over at about 10am, and we brought our 4 yr old () and our 8 yr old. They are very friendly about siblings. I highly recommend bringing activities (coloring, etc) for the kids since there is a lot of grownup talking time. And surprisingly, we got our son's genetic test results back in under 2 months Patty Re: Re: NIH Deanna, Thanks so much for your post. Very helpful for us as we prepare to go to NIH Dec. 4. I've never heard anything about having to draw blood at home afterwards. Do you actually mean AT home yourself, or going to a local lab? How many times? I wonder if that is something everyone has to do. Do you have any contact information for the Children's Inn that might give us information about setting up care for a sibling? I would like my husband to be able to be at the appointments with us, but I would love for our six-year-old to have something else to do. It sounds like we will be on the same schedule as you (checking in at 7 for a 9:00 appointment). We're trying to figure out whether we can fly home the same day. If you were done by 11, that would seem like we could. I wonder what might happen that would make that different. Anyone else have any input on that? Thanks again. - On 10/26/06, deannabndr <mattdeanna@...> wrote: > > WE JUST now got in from our trip to NIH. We saw Dr Chitakara > (sp?). SHe was fabulous, but the trip was a little underwhelming. > Not that it was bad, but I gave more info than I received. But all > in all we got the genetic tests done and that was the main thing. I > had no idea that we had to collect blood at home too though with the > next fever (which ours won't be til Feb as we are on 'break'). > Anyhow, the Children's Inn was INDREDIBLE and we actually got to > meet a family with a son with PFS that when she emails me I will > give her the link to this site. I briefly met a member here too. > > Anyway, we went with our whole family that includes Zachary who is > 5, sister 3yrs and brother 16mos. My husband was with me though so > he looked after the others. I did read something about being able > to possibly set up care for siblings at the Inn...I would just ask > about it. The appointment was easy and actually pretty quick once > you got all registered. We had to be at Admissions at 7am, then > after paperwork and questions we got sent up to the Peds Clinic. > There, they were pretty efficient and quick....and there is a nice > play space and fridge with juices in it. We saw Dr Chitakara 30mins > earlier than our appointment time, they only saw one other lady who > went over the study specifics and the paper that you get in the mail > about it. Then they sent us for the blood draw with a thick EMLA > cream on the arms. There were alot of viles, but not much went in > each and it went very quick and Zachary actually said 'that was an > easy lab, mom' when we were done. We were out of there by 11am at > the latest. > > Deanna > mom to Zachary, 5yrs, > Huntsville, AL > > > > > > We got our call from Beverly today, and will be going to NIH > December 4. > > Anyone else going to be there then? > > > > It sounds like the wait time depends on the doctor you see. I > can't remember > > the name she gave me (I was out and she called on my cell phone, > and I had > > no way to write it down. I think it sounded like an Indian name > perhaps.) I > > asked if we would see Dr. Kastner at all, and she said no, and > that it would > > be another eight month wait at least if we wanted to see him. He > had > > reviewed 's chart and assigned him to this other doctor who > is working > > with the part of the study. So maybe kids with different > symptoms get > > assigned to different doctors who have different length backlogs? > We > > submitted paperwork in March, so it will be nine months for us from > > application to appointment. > > > > We will also have our six-year-old with us. Does the Children's > Inn provide > > any activities for siblings during the appointment, or will he > need to be > > with us the whole time? I'd be interested in hearing how you > managed from > > anyone else who has been through this with another child along > (off list, if > > you don't think the whole group would be interested, or feel free > to send it > > to the list if you want). > > > > We are also working with Angel Flight to get there, so I would > also be > > interested in hearing from anyone who has had that experience. > We're coming > > from Michigan. I'm a little nervous about flying out of Michigan > on a tiny > > plane in December of all months (oh, well, probably better than > February!) > > > > Anyway, it was really exciting to finally get the call! > > > > - > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 NIH stands for " National Institutes of Health " and is located in Bethesda, MD. See their website at: www.nih.gov for more info. If you search under NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases), you will find the Periodic Fever Syndromes research studies (called protocols). The one that most of the people posting here talk about is: 94-AR-0105. Kate >From: SHAUN SMITH <kssmith5881@...> >Reply- > >Subject: RE: Re: NIH >Date: Fri, 27 Oct 2006 07:34:05 -0700 (PDT) > >I am new to this illness and group so excuse me if I sound dumb, but what >does NIH mean? where is it? _________________________________________________________________ Try the next generation of search with Windows Live Search today! http://imagine-windowslive.com/minisites/searchlaunch/?locale=en-us & source=hmtag\ line Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 NIH is as said in a prior email, the National Instititute of Health. It is the research center in the US run by our government for rare and unusual disorders... and where research is done for cancer and other diseases... There is current research going on for Periodic Fever disorders. Simply go to the file section and the link section at the site I created and you will find links and files directly to the specific site at NIH for Periodic Fever disorders. God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 , Our first (and second) appointments at the NIH began around 10 a.m. Only the first you have to " check in " at admissions at 7 or 7:30 and that took under 1/2 for us. Also, when you " check in " at that early hour, you can go alone and leave your children and husband at the Inn sleeping. You will have plenty of time to go back to the Inn and get them before the appointment at 9 or 10, whatever your time is. Both times, we were walking out of the Hospital by noonish, maybe 12:30 at the latest. So in short, we were able to catch at 2:30/3:00 flight home. Good luck. in Tampa. Mom to Jonah, 5 (TRAPS) > > > > > > We got our call from Beverly today, and will be going to NIH > > December 4. > > > Anyone else going to be there then? > > > > > > It sounds like the wait time depends on the doctor you see. I > > can't remember > > > the name she gave me (I was out and she called on my cell phone, > > and I had > > > no way to write it down. I think it sounded like an Indian name > > perhaps.) I > > > asked if we would see Dr. Kastner at all, and she said no, and > > that it would > > > be another eight month wait at least if we wanted to see him. He > > had > > > reviewed 's chart and assigned him to this other doctor who > > is working > > > with the part of the study. So maybe kids with different > > symptoms get > > > assigned to different doctors who have different length backlogs? > > We > > > submitted paperwork in March, so it will be nine months for us from > > > application to appointment. > > > > > > We will also have our six-year-old with us. Does the Children's > > Inn provide > > > any activities for siblings during the appointment, or will he > > need to be > > > with us the whole time? I'd be interested in hearing how you > > managed from > > > anyone else who has been through this with another child along > > (off list, if > > > you don't think the whole group would be interested, or feel free > > to send it > > > to the list if you want). > > > > > > We are also working with Angel Flight to get there, so I would > > also be > > > interested in hearing from anyone who has had that experience. > > We're coming > > > from Michigan. I'm a little nervous about flying out of Michigan > > on a tiny > > > plane in December of all months (oh, well, probably better than > > February!) > > > > > > Anyway, it was really exciting to finally get the call! > > > > > > - > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 27, 2006 Hi, This thread is interesting regarding length of stay at the NIH. I really think it depends on if the fever team believes your child actually has or if after they evaluate and discuss the child's older medical records and listen to the clinical presentation the caregiver gives, they then make a medical judgement as to IF the child needs more testing.... If they really feel the child has as a diagnosis then there really is no reason to have the family stay more than the few hours needed for eval and lab work. ph and I only stayed a morning the first visit to NIH.... But once Kastner evaluated his labs in his chart and his ER records indicating meningitis on more than one occasion, as well as having chronic hives he ran more testing from the speciman of his DNA... and since when we go we end up having the usual labs plus some more... and eye exams, and neuro exams etc... But this is because they found the " grey " zone CIAS1 mutation and because he exhibits other symptoms.... So our stay is alway longer... at least 3 days of testing and sometimes 4.... Of course we are not there ALL day, but the stay ends up being long... The parents I have spoken with who have children who are diagnosed even with some of the genetic disorders still may only visit yearly once controlled for a one day stay... It really DEPENDS on the possible secondary illness'... if they need specialty clinics etc... The NOMID families stay for a few days... too... With , they are following many of those kids yearly and again just labs are usually done so the trips are a day!! Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Share this post Link to post Share on other sites
