Guest guest Report post Posted October 27, 2006 Must be nice we have never been in and out of there in 1 day. Always 2-3 days. I just hope this time they have more answers. We always see Kasnter as they have no clue now what Kiara has We are going this time for bone density testing, endocrinology and I don't know who else lol mom to Kiara unknown.. said to not have for sure Re: NIH , 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 30, 2006 Wow, I never heard of them not asking for the parent to contact the Research Nurse in 6 months or a year!! Especially with siblings. It is unusual for Dr. Kastner or the other members of the team to label as especially with two kids in the same family. They usually say it is most likely an unidentified mutation causing the fevers and that maybe in time they will identify it... They commonly call it Periodic Fever Syndrome of unknown origin or etiology. The fever team most often will ask for you to come back in a year... (sometimes 6 months) simply to run immunoglobulins and a few other tests.... and to see how the child (ren) are doing.... if new symptoms occur, fever patterns change etc... They do not contact you though... they usually tell the parent to contact them is x amount of months and you would contact Beverly and she would set up the appointment for a follow-up. The follow-up is usually a few hours... eval and labs... If new genetic studies become available they will usually ask to run them. Hope this helps, 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 31, 2006 I have to admit that I was kind if shocked at that response too! Especially with 2 kids. It instantly brought Nicki to mind, wondering if she was the one that gave that reply... --------------------------------- Access over 1 million songs - Music Unlimited Try it today. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2007 Sacora, doesn't have an official appointment yet, but Beverly " penciled " us in for April 24th. Ellyn Mom of (Periodic Fever) (5), Alyssa(9), and Kate(4) Philadelphia, PA " Sacora " <sacoracasselman@...> Sent by: 01/24/2007 06:31 PM Please respond to To cc Subject NIH Is anyone going to the NIH in April? What dates if anyone is? Sacora mom of nicolas 13 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 2, 2007 Yes it is the same study.. Go to the files and links there is ALL the info regarding the study and the director Dr. Dan Kastner. God Bless Fran PS Contact info is in the file section too. Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06 Waxhaw NC / Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 6, 2007 HI , So when you go why do they have you stay so long? They are having the doctors in our local area take care of some of the test they want done and biopsy of the lymph nodes. Any ways good luck take care --- proudmom@... wrote: > Kiara and I are at the inn this week til thursday... > anyone elsE???? > > > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 7, 2007 We always take a day of rest when we first get here. Then we see docs all day tomorrow and possible wed.. then we leave mid day thursday.. Always time for shopping and museums Quoting Sacora Casselman <sacoracasselman@...>: > HI , > So when you go why do they have you stay so long? They > are having the doctors in our local area take care of > some of the test they want done and biopsy of the > lymph nodes. Any ways good luck > take care > --- proudmom@... wrote: > > > Kiara and I are at the inn this week til thursday... > > anyone elsE???? > > > > > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 7, 2007 Sacora, What happened at NIH??????????????????????????????????????????????????????????????? I left a post on your carepage! Re: NIH HI , So when you go why do they have you stay so long? They are having the doctors in our local area take care of some of the test they want done and biopsy of the lymph nodes. Any ways good luck take care --- proudmom@... wrote: > Kiara and I are at the inn this week til thursday... > anyone elsE???? > > > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 7, 2007 hey tracy you have a carepage? Quoting <gt4990@...>: > Sacora, > > What happened at > NIH??????????????????????????????????????????????????????????????? > I left a post on your carepage! > > Re: NIH > > > HI , > So when you go why do they have you stay so long? They > are having the doctors in our local area take care of > some of the test they want done and biopsy of the > lymph nodes. Any ways good luck > take care > --- proudmom@... wrote: > > > Kiara and I are at the inn this week til thursday... > > anyone elsE???? > > > > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 8, 2007 no...but i check yours!!!LOL Re: NIH > > > HI , > So when you go why do they have you stay so long? They > are having the doctors in our local area take care of > some of the test they want done and biopsy of the > lymph nodes. Any ways good luck > take care > --- proudmom@... wrote: > > > Kiara and I are at the inn this week til thursday... > > anyone elsE???? > > > > > > > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 7, 2007 Sacora, I believe you can also call the inn and they have schedules of the vans that go back and forth to the airports. I've heard other parents mention it at the inn. We've always driven though, so I've never done it personally. Good luck, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 7, 2007 Thank you Fran and I did ask about the vans and the Inn said they did not have any vans that came back and forth besides the shuttle buses. But thank you so much Sacora Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 7, 2007 Thank you, I will check into that. Have you or anyone flown into the Reagan Nation Airport? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 7, 2007 We flew OUT of Reagan airport last spring and there was a shuttle that took us easily from the NIH to the airport. I got a lot of good info from the NIH's site; here is a link for the shuttle schedules. Sorry if that's not what you were asking about; I hadn't followed the whole conversation. http://dtts.ors.od.nih.gov/patient_shuttles.htm , Seattle Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 7, 2007 Sorry, the shuttle bus is the " van " I was thinking of. Did they say the shuttle buses go to the airport? I know I've talked to people who have used them. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 30, 2008 Hi ! What a small world! My son PJ is a patient of the NIH and we live in Manassas, Va as well. Who is your son's pediatrician and who diagnosed him? You can find the contact info in the files section of the group. I believe that the waiting list is pretty long but you could start by contacting Beverly Barham at the NIH. Pat Bombardier, mom to PJ, 14 years old, Manassas, Va. --------------------------------- Never miss a thing. Make your homepage. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 You can try to contact Plath at the NIH. That is who we saw 2 years ago. Her phone # is 1-888-996-4267 ext. 3 hello there - I am new to this group. My son (age 5) has been battling fevers for about a year. Only recently he has been diagnosed with . Reading thru all of your posts, it gives me some comfort to know others feel the same frustrations as my wife and i do. My first question (of many I am sure) is about NIH. I see in some other messages that there is some sort of study going on at NIH. Does anyone have any contact information for the study? Thank You Manassas, VA <!-- #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line-height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text-decoration:none;} --> <!-- #ygrp-sponsor #ygrp-lc{ font-family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp-lc .ad{ margin-bottom:10px;padding:0 0;} --> <!-- #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line-height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp-vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left{ float:left;white-space:nowrap;} ..bld{font-weight:bold;} #ygrp-grft{ font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font-family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-vital{ background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-transform:upp\ ercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font-weight:bold;color:#ff7900;float:right;width:2em;text-align:right;padding-ri\ ght:.5em;} #ygrp-vital ul li .cat{ font-weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style-type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background-color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font-weight:bold;color:#628c2a;font-size:100%;line-height:122%\ ;} #ygrp-sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} ..MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} ..replbq{margin:4;} --> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 26, 2008 My son has also been referred to the NIH. I spoke to the nurse in the deparment that handles periodic fever syndrome. She was very nice and extremely helpful. The doctor that we would be seeing is Dr. Kastner. Apparently they don't review the charts very frequently due to how busy the doctor is, so dont be surprised if it takes a couple of months to hear something back. The NIH faxed a questionaire to my pediatrician office for me to fill out, and then my pediatrician also wrote a summary to fax along with medical documentation. The nurse mentioned that there is a children's inn where family can stay for free that is set up by the NIH, along as there is availability. There is a waiting list of over 100 children and they will see you according the severity of your childs case. If Dr Kastner is the doctor you would be seeing at the NIH I would give you the number you need. My son has been tested through DNA for every Periodic fever syndrome, and all have come back fine, except for TRAPS Syndrome. There was a mutated gene found but not one usually associated with TRAPS.It could be a gene that still hasn't been seen, since the syndrome is rare. The nurse also said to feel free to call anytime to see if the chart has been reviewed and/or if he was placed on a list. GOOD luck. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 27, 2008 Thank you and good luck to you too. ************** Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & amp; icid=aolcom40vanity & amp;ncid=emlcntaolcom00000002) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 15, 2009 , thank you for all the information. Right now, I am going to put in on the back burner until I rule out Lyme. I honestly don't know how I'd travel to D.C. because I'm so weak. A short trip to Tulsa two weeks ago still has me under. Val Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 15, 2009 Any salt loads on the vacation?They can sneak in and in some will increase BP the next day.CE Grim MDOn Jul 15, 2009, at 1:02 PM, Valarie wrote: I've had a full work-up at University of Colorado Endocrinology, a full heart work-up at National Jewish. I've been to Mayo Clinic and I have an endo I haven't seen in over a year. I've gotten blank stares from all of them. The exception was National Jewish which was exceptionally thorough but had no answers. Since I've been back from my mini vacation, my BP is up 25 pts, even though I raised spiro 25 mg. I went through a similar experience in April and concluded my spiro might be bad. I don't think it was. I'm hoping it settles down soon. Urinary sodium at Mayo last summer was too low to measure. I'm not eating any differently. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bindner One step at a time. The first step is to look at the Endocrine trial and call them to request a study letter, which is taken to your endo. Don't worry about the later steps until your endo weighs in - and take Dr. Grim's advice about being wary of the Lyme route - your symptoms may be best treated by an endo, even if they have nothing to do with PA. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 16, 2009 Actually, there is and I hadn't thought about it. At the picnic, in 104 degree weather, I ate one slice of bread with a little barbequed pork on it, and a tad of side dishes. I ate just a tiny bit of several things. What else does one eat at a picnic in Tulsa, OK? That's when I got so faint in the heat and have had a hard time recovering. How long should it take to recover from a hit of salt like that? Other times when we go out, I just eat a tiny bit of things and it has not bothered me. 'course, I'm not in the heat then. I've been taking K pills the last two days and they seem to be helping. I'm back to peeing all night and not sleeping. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim Any salt loads on the vacation? They can sneak in and in some will increase BP the next day. CE Grim MD On Jul 15, 2009, at 1:02 PM, Valarie wrote: Since I've been back from my mini vacation, my BP is up 25 pts, even though I raised spiro 25 mg. Quote Share this post Link to post Share on other sites