Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Hi, Breana was @ NIH 2 years ago....Even though her charts had been fedEx to NIH I still traveled with her ENTIRE medical file! I have copies of every lab work an doc visit summaries. I also have a chart in the front of her 'file' that list every fever,rash, eye pain etc.....with date. I separated all doc notes into sections in her file...ped, rheum, ortho, nero, physical therapy evals ETC! It makes everything so much easier for me to find. Let me just say that this has come in handy more times than I can tell you! I take it with me to all her appts. NIH appt Hi there, My son Mason (2 yr) and daughter Madison (3 yr) have their appts at NIH on Aug. 2nd. For those of you that have already gone...what paperwork do I need to bring? I already had faxed their info and their ID doc also faxed information. We got the appt pretty quick so nothing much new is going on with them other than they get a fever, we give prednisone, and then it goes away. So other than a list of their episodes, what else do I need if everything has already been faxed? My daughter is on day 43...she has never gone past day 46...it would be kind of nice if she would have one when we get there. She has had 11 fevers since Nov. 04. My sons fevers are really slowing down. He's only had 3 fevers this year so far and only had 5 fevers in 2004. I can't wait to talk with Drs who won't be blowing me off but that will actually be interested! Any advice on our trip would be greatly appreciated! Austin, Tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2005 Report Share Posted July 29, 2005 Hi , I've been at my folks home in NJ for the last 2 weeks and haven't checked this board till now. I'm very excited for your trip to NIH. I think you may get some answers and support you need. In answer to your question I had typed up a summary of both girls fever histories for Dr. Kastner. Symptoms, severity, triggers, cycle lengths and frequency, reactions to medications, and every other " weird " thing that I had documented in my notes over the years. I did it in Chronological order since symptoms did seem to change over time, I wanted the history to be very clear and easy to follow. I also wrote out a list of every question I could think of to ask Dr. KAstner. Leave absolutely NOTHING to your memory. There was so much going on and with both kids screaming for Mommy, I'm glad I had cheat sheets in front of me so I could converse intelligently with Dr. Kastner. My thought processes during the appt., apparently, were drowned out by my two " lovely " children. I'm glad I over-prepared. Good luck and have some fun while you're there too! Wilke > Hi, > > Breana was @ NIH 2 years ago....Even though her charts had been fedEx to NIH I still traveled with her ENTIRE medical file! I have copies of every lab work an doc visit summaries. I also have a chart in the front of her 'file' that list every fever,rash, eye pain etc.....with date. > I separated all doc notes into sections in her file...ped, rheum, ortho, nero, physical therapy evals ETC! It makes everything so much easier for me to find. Let me just say that this has come in handy more times than I can tell you! I take it with me to all her appts. > > NIH appt > > > Hi there, > My son Mason (2 yr) and daughter Madison (3 yr) have their appts at NIH on Aug. 2nd. For those of you that have already gone...what paperwork do I need to bring? I already had faxed their info and their ID doc also faxed information. We got the appt pretty quick so nothing much new is going on with them other than they get a fever, we give prednisone, and then it goes away. So other than a list of their episodes, what else do I need if everything has already been faxed? My daughter is on day 43...she has never gone past day 46...it would be kind of nice if she would have one when we get there. She has had 11 fevers since Nov. 04. My sons fevers are really slowing down. He's only had 3 fevers this year so far and only had 5 fevers in 2004. I can't wait to talk with Drs who won't be blowing me off but that will actually be interested! Any advice on our trip would be greatly appreciated! > > Austin, Tx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 I am so happy :-) Jarrod got an appointment at NIH March 14. I was just thrilled when Nicki called. I really wasn't expecting it this soon. We only just started his paperwork Oct 31 and the ID doc just got their letter in last week. Amazing!! I felt like a huge weight was finally lifted off my shoulders!! Of course, this comes on the heels of us battling the insurance company to get genetic testing for HIDS and TRAPS. Just had those tests done on Friday through insurance. It is a relief to have the NIH appt!! Jarrod has been exhibiting more symptoms with each episode as well as having episodes closer together! IT will be nice to maybe finally get an answer. Thanks to everyone on this site who encouraged me to submit the paperwork!! (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 I thought you werent supposed to have any testing done prior to going? Re: NIH APPT I am so happy :-) Jarrod got an appointment at NIH March 14. I was just thrilled when Nicki called. I really wasn't expecting it this soon. We only just started his paperwork Oct 31 and the ID doc just got their letter in last week. Amazing!! I felt like a huge weight was finally lifted off my shoulders!! Of course, this comes on the heels of us battling the insurance company to get genetic testing for HIDS and TRAPS. Just had those tests done on Friday through insurance. It is a relief to have the NIH appt!! Jarrod has been exhibiting more symptoms with each episode as well as having episodes closer together! IT will be nice to maybe finally get an answer. Thanks to everyone on this site who encouraged me to submit the paperwork!! (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 I am happy to here your going. I am hoping for answers too that would be great. My son is doing the same thing with each episode something else new pops up.I hate seeing him go through this. They asked if we could be there March 1-2 but that is too soon for me to get everything arranged so were going March 29. Is there anyone else going around that time? It would be so nice to meet other families going through this as well. Good luck and keep me posted. Fran thank so much for your information and everyone on this website it is great to have support from other people. Thank you all Sacora, mom of Nicolas 12 merryms@... wrote: I am so happy :-) Jarrod got an appointment at NIH March 14. I was just thrilled when Nicki called. I really wasn't expecting it this soon. We only just started his paperwork Oct 31 and the ID doc just got their letter in last week. Amazing!! I felt like a huge weight was finally lifted off my shoulders!! Of course, this comes on the heels of us battling the insurance company to get genetic testing for HIDS and TRAPS. Just had those tests done on Friday through insurance. It is a relief to have the NIH appt!! Jarrod has been exhibiting more symptoms with each episode as well as having episodes closer together! IT will be nice to maybe finally get an answer. Thanks to everyone on this site who encouraged me to submit the paperwork!! (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 >>>I thought you werent supposed to have any testing done prior to going?>>> You should not have testing... or may I say you NEED NOT.... but if it is done it is not a big deal. NIH will REPEAT the testing according to their protocol as they order more mutations than the " usual " screening at genetic labs... Also.... there is NO record of the genetic study when NIH does this... no paper trail so your child will not have a pre-existing condition for some insurance purpose! We had a study for FMF done years before we joined NIH and Dr. Kastner repeated that when we went to NIH. Hope that clarifies. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 What is NIH? My 3 year old son has been suffering for 3 years from . There are no specialists in in Canada. I would like as much info re: specialists. And hopefully I will be able to bring my son to see a specialist soon. He has been prescribed steroids for children. We have been to The Sick Kids' Hospital in Toronto, but they weren't able to offer any help or give us any leads. Thank you, Raven Sacora Casselman <sacoracasselman@...> wrote: I am happy to here your going. I am hoping for answers too that would be great. My son is doing the same thing with each episode something else new pops up.I hate seeing him go through this. They asked if we could be there March 1-2 but that is too soon for me to get everything arranged so were going March 29. Is there anyone else going around that time? It would be so nice to meet other families going through this as well. Good luck and keep me posted. Fran thank so much for your information and everyone on this website it is great to have support from other people. Thank you all Sacora, mom of Nicolas 12 merryms@... wrote: I am so happy :-) Jarrod got an appointment at NIH March 14. I was just thrilled when Nicki called. I really wasn't expecting it this soon. We only just started his paperwork Oct 31 and the ID doc just got their letter in last week. Amazing!! I felt like a huge weight was finally lifted off my shoulders!! Of course, this comes on the heels of us battling the insurance company to get genetic testing for HIDS and TRAPS. Just had those tests done on Friday through insurance. It is a relief to have the NIH appt!! Jarrod has been exhibiting more symptoms with each episode as well as having episodes closer together! IT will be nice to maybe finally get an answer. Thanks to everyone on this site who encouraged me to submit the paperwork!! (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hello Raven When you joined I sent a welcome note... included in the welcome was a description of this group, a summary of my son's fever disorder and journey and I explained in brief that NIH has current research going on... www.nih.gov Go to our files and our links and find an ABUNDANT amount of information regarding the studies. NIH is in Bethesda MD... run by our government and funded through the government and through donations. It is where rare conditions and cancers are treated and researched. It is all free when accepted into a study. It is where the most current healthcare professionals are.... who are aware of the rarest conditions. It is also where they have found the newest genetic mutations for fever disorders changing MANY children's diagnosis from (lumped together children with periodic fevers)..... to disorders such as HIDs, TRAPs, FMF, NOMID/CINCA/Muckle Wells etc... God Bless Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 , We had the genetic tests done because at that time we did not hear from NIH or even think Jarrod was close on the list. His paperwork had only been in for (3) months and I was told to be prepared to wait for 18. With the additional symptoms and recent frequency, we couldn't wait that long. Also, we weren't able to get all the testing done - our insurance approved only (2) tests of the many available. They narrowed down the symptoms and " figured out " which ones they thought Jarrod had. Amazing to me, Jarrod's doctors can't pinpoint anything, but the insurance company seems to think they figured it out (LOL). Believe me, if I would have known Jarrod would get called this fast I would not have had the testing done through the insurance. NIH was aware that he just had this test done and they just said if we have the results in by the time we go they want us to bring a copy. Now I am just waiting on the packet Nicki said would be mailed. After I receive that I will start to finalize our plans. We are planning on driving (at least this trip). (SWFL) Mother of Jarrod (3) On Fri, 3 Feb 2006 11:22:55 -0700 " Bisson " <proudmom@...> writes: I thought you werent supposed to have any testing done prior to going? Re: NIH APPT I am so happy :-) Jarrod got an appointment at NIH March 14. I was just thrilled when Nicki called. I really wasn't expecting it this soon. We only just started his paperwork Oct 31 and the ID doc just got their letter in last week. Amazing!! I felt like a huge weight was finally lifted off my shoulders!! Of course, this comes on the heels of us battling the insurance company to get genetic testing for HIDS and TRAPS. Just had those tests done on Friday through insurance. It is a relief to have the NIH appt!! Jarrod has been exhibiting more symptoms with each episode as well as having episodes closer together! IT will be nice to maybe finally get an answer. Thanks to everyone on this site who encouraged me to submit the paperwork!! (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 We received our NIH packet FedEx yesterday. Also, the day before we received a phone call from a man named who was asking questions about our visit and getting information and such to get the process rolling. Hopefully, things are back on track with communication :-) (SWFL) Mother of Jarrod (3) Quote Link to comment Share on other sites More sharing options...
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