Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Just a quick note... NIH will accept YOUNGER patients if after they evaluate the medical records they feel the child may have a genetic disorder.... So... for any of you thinking about genetic testing.... or thinking your child is not the perfect fit to and have read the presentation of the genetic disorders such as HIDs, TRAPs, FMF, Muckle Wells, Bechets etc..... I would contact NIH.... let your doctor know he/she needs to get all the records to Bethesda Md, and in Bev's hands... I posted earlier the contact information... Do not let the age factor stop you. We have MANY children here who were younger than 5 and were accepted at NIH. 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 October 18, 2005 Report Share Posted October 18, 2005 Yes , We first met Dr. Kastner when Breana was 2.5...she will be 5 this November. RE: What to do next??? Just a quick note... NIH will accept YOUNGER patients if after they evaluate the medical records they feel the child may have a genetic disorder.... So... for any of you thinking about genetic testing.... or thinking your child is not the perfect fit to and have read the presentation of the genetic disorders such as HIDs, TRAPs, FMF, Muckle Wells, Bechets etc..... I would contact NIH.... let your doctor know he/she needs to get all the records to Bethesda Md, and in Bev's hands... I posted earlier the contact information... Do not let the age factor stop you. We have MANY children here who were younger than 5 and were accepted at NIH. 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 October 18, 2005 Report Share Posted October 18, 2005 That is good to know. I will wait for his appointment on the 28th and take it from there. Thanks, --- Fran Bulone <fbulone@...> wrote: > Just a quick note... > NIH will accept YOUNGER patients if after they > evaluate the medical records > they feel the child may have a genetic disorder.... > > So... for any of you thinking about genetic > testing.... or thinking your > child is not the perfect fit to and have read > the presentation of the > genetic disorders such as HIDs, TRAPs, FMF, Muckle > Wells, Bechets etc..... I > would contact NIH.... let your doctor know he/she > needs to get all the > records to Bethesda Md, and in Bev's hands... I > posted earlier the contact > information... Do not let the age factor stop you. > We have MANY children > here who were younger than 5 and were accepted at > NIH. > > God Bless > Fran > Fran A Bulone > Mom to ph 6 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > [Non-text portions of this message have been > removed] > > __________________________________ Start your day with - Make it your home page! http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 We don't have much as far as medical records for the fevers. We have one hospitalization and now some bloodwork taken before and during a fever. I have not over the years taken in Zachary much for the fevers as it was a waste of time going in and finding nothing and being told it's probably a virus. Will this matter? I have logged all his fevers beginning of this year. How do they decide who they will take? Thanks for the info! Deanna > > Just a quick note... > NIH will accept YOUNGER patients if after they evaluate the medical records > they feel the child may have a genetic disorder.... > > So... for any of you thinking about genetic testing.... or thinking your > child is not the perfect fit to and have read the presentation of the > genetic disorders such as HIDs, TRAPs, FMF, Muckle Wells, Bechets etc..... I > would contact NIH.... let your doctor know he/she needs to get all the > records to Bethesda Md, and in Bev's hands... I posted earlier the contact > information... Do not let the age factor stop you. We have MANY children > here who were younger than 5 and were accepted at NIH. > > 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 October 19, 2005 Report Share Posted October 19, 2005 The Docs at NIH consult after reviewing each persons clinical history and presentation.... as well as lab studies. Hope that helps/ Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 try to think back to important family events when your child had a fever. I did that to fill in some of the gaps since I was not always keeping a fever journal. For instance, I remember him having an episode during a Superbowl party at our house. I looked back and found the date for that year and wrote that one in the journal. It might help you piece it together a little bit. Hope this helps. --- deannab0103 <mattdeanna@...> wrote: > We don't have much as far as medical records for the > fevers. We > have one hospitalization and now some bloodwork > taken before and > during a fever. I have not over the years taken in > Zachary much for > the fevers as it was a waste of time going in and > finding nothing > and being told it's probably a virus. Will this > matter? I have > logged all his fevers beginning of this year. How > do they decide > who they will take? > Thanks for the info! > Deanna > > > > > > Just a quick note... > > NIH will accept YOUNGER patients if after they > evaluate the > medical records > > they feel the child may have a genetic > disorder.... > > > > So... for any of you thinking about genetic > testing.... or > thinking your > > child is not the perfect fit to and have > read the > presentation of the > > genetic disorders such as HIDs, TRAPs, FMF, Muckle > Wells, Bechets > etc..... I > > would contact NIH.... let your doctor know he/she > needs to get all > the > > records to Bethesda Md, and in Bev's hands... I > posted earlier the > contact > > information... Do not let the age factor stop you. > We have MANY > children > > here who were younger than 5 and were accepted at > NIH. > > > > God Bless > > Fran > > Fran A Bulone > > Mom to ph 6 yrs old > > Waxhaw, NC > > Owner & Moderator Group > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 FYI - Beverly Barham is no longer the nurse for pediatrics. The new ladies name (it's the same phone number but option #3). I'll get back to you with it - I have it on my voice mail - but since I'm on the computer I can't get to it right now. Tammy F. __________________________________ Music Unlimited Access over 1 million songs. Try it free. http://music./unlimited/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 Bev was NEVER the nurse for pediatrics. She is the nurse specialist for the Research Department for NIH and NIAMs. The department is for ALL ages and specifically for http://www.niams.nih.gov/rtbc/index.htm Beverly Barham, R.N., B.S.N. Nurse Specialist (Research) Office of the Clinical Director Phone: 301-594-2494; 888-996-4267 Fax: 301-402-0765 Building 10, Room 9S209 E-mail: bbarham@... Beverly Barham received her Bachelor of Science in Nursing from East Carolina University in Greenville, North Carolina in 1980. From 1980 to 1982 she worked as a Clinical Nurse in the Neurosurgical Intensive Care Unit at Richmond Memorial Hospital in Virginia. In 1982 she began her career at the NIH Clinical Center caring for individuals with chronic medical conditions. She has worked in various clinical roles and settings within the Clinical Center. In January 2004, she joined the NIAMS as a Research Nurse Specialist coordinating trials involving adults with periodic fever syndromes and adults with inflammatory myositis. She has received several awards for Clinical Excellence and Leadership. Selected <http://www.niams.nih.gov/rtbc/$so$1/LabsBranches_publications.jsp@branchId= 33 & groupId=-1 & memberId=562.htm> Publications Other NIAMS Affiliations: <http://www.niams.nih.gov/rtbc/LabsBranches_branch.jsp@branchId=33.htm> Office of the Clinical Director <http://www.niams.nih.gov/rtbc/LabsBranches_groups.jsp@branchId=33 & groupId=- 1.htm> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 I had the same problem. I didn't take Maddie in for the fevers a lot either until she started having other complications due to another disorder she has. So I did not have good documentation of the fevers either. I just looked at the calendar and wrote done when the fevers were from my memory of events that took place around them. I typed it up and faxed that as well as the few medical records on the fevers I had. Hope that helps. Tracey On Wednesday, October 19, 2005, at 07:38 AM, deannab0103 wrote: > We don't have much as far as medical records for the fevers. We > have one hospitalization and now some bloodwork taken before and > during a fever. I have not over the years taken in Zachary much for > the fevers as it was a waste of time going in and finding nothing > and being told it's probably a virus. Will this matter? I have > logged all his fevers beginning of this year. How do they decide > who they will take? > Thanks for the info! > Deanna > > >> >> Just a quick note... >> NIH will accept YOUNGER patients if after they evaluate the > medical records >> they feel the child may have a genetic disorder.... >> >> So... for any of you thinking about genetic testing.... or > thinking your >> child is not the perfect fit to and have read the > presentation of the >> genetic disorders such as HIDs, TRAPs, FMF, Muckle Wells, Bechets > etc..... I >> would contact NIH.... let your doctor know he/she needs to get all > the >> records to Bethesda Md, and in Bev's hands... I posted earlier the > contact >> information... Do not let the age factor stop you. We have MANY > children >> here who were younger than 5 and were accepted at NIH. >> >> 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 October 15, 2009 Report Share Posted October 15, 2009 Your medical records belong to you, doctors cannot withhold your test results or anything else. Go hear to this link. http://f1.grp.fs.com/v1/kOTWSrAzkjh955ScbO9Vio-lcyE147jwoaC4jH5t7RPwk-rVzIvZtlIArFSCYtsvKm6HzJoN3ypy_ElMhwBTOw/NHS%20TREATMENT/How%20to%20access%20your%20medical%20records.doc Hi I've been chasing the hospital for results of my TRH test ( & ITT/GRNH) All I get is " Endo will call you in if there's a problem " . After some argument, i've been told I can " write to my GP in 2 weeks " . Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!! Anyway, looks like I need to know if I have Antibodies. Does the TRH test measure Antibodies or should I write to my GP or Endo & ask for a separate blood test with Andibodies? Thanks Ian No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 03:57:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 Thanks Sheila Printed & will follow up now. Do you know if the TRH would measure Antibodies? If so, I'll wait 2 weeks for the results. Or do you think I should order a separate test with FT3, FT4 & Antibodies? Thanks again Ian > > Your medical records belong to you, doctors cannot withhold your test > results or anything else. Go hear to this link. > > > > http://f1.grp.fs.com/v1/kOTWSrAzkjh955ScbO9Vio-lcyE147jwoaC4jH5t7RP\ wk-r > VzIvZtlIArFSCYtsvKm6HzJoN3ypy_ElMhwBTOw/NHS%20TREATMENT/How%20to%20acces\ s%20 > your%20medical%20records.doc > > > > > > > > Hi > > I've been chasing the hospital for results of my TRH test ( & ITT/GRNH) > > All I get is " Endo will call you in if there's a problem " . After some > argument, i've been told I can " write to my GP in 2 weeks " . Why they can't > give them me direct, I don't know?? The GP is in the dark ages, can't email > or even print, they have to RE-TYPE everything!! > > Anyway, looks like I need to know if I have Antibodies. Does the TRH test > measure Antibodies or should I write to my GP or Endo & ask for a separate > blood test with Andibodies? > > Thanks > Ian > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 > 03:57:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 > > Hi > > I've been chasing the hospital for results of my TRH test ( & ITT/GRNH) > > All I get is " Endo will call you in if there's a problem " . After some argument, i've been told I can " write to my GP in 2 weeks " . Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!! > Can sympathise here Ian, I asked my gp for numbers on thyroid function tests they said .No!. turns out the receptionist didn't know the screen info was on and how to print it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 Hi Ian TRH is a stimulation test - it is separate to the antibodies test. If you want antibodies tested your GP should be able to arrange that very easily. Lou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 No - you need a separate test for thyroid antibodies. Your GP should test your antibodies if you ask him and also TSH and Free T4. He might not be allowed to do a Free 3 so you might need to get that one done privately. Luv - Sheila Printed & will follow up now. Do you know if the TRH would measure Antibodies? If so, I'll wait 2 weeks for the results. Or do you think I should order a separate test with FT3, FT4 & Antibodies? Thanks again Ian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 Thanks Isabel, Lou, Sheila OK, so how would I go about asking for another blood test for Antibodies? If I wrote a letter to the GP, what would I say? I don't want to use up all my credit (well I don't care, but I don't want to damage the relationship so bad that it costs me when I really need it) if the test turns out to show I have no Antibodies. I already had a massive bust up to get Testosterone when I was 0.6 inside the Ref Range. Btw, my Nan (looking back now) had a huge Goitre & my dad (who sadly took his own life) had all the symptoms I have. How should I handle this? Thanks Ian > > No - you need a separate test for thyroid antibodies. Your GP should test > your antibodies if you ask him and also TSH and Free T4. He might not be > allowed to do a Free 3 so you might need to get that one done privately. > > > > Luv - Sheila > > Printed & will follow up now. > > Do you know if the TRH would measure Antibodies? If so, I'll wait 2 > weeks for the results. > > Or do you think I should order a separate test with FT3, FT4 & > Antibodies? > > Thanks again > Ian > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 Hi Sheila, Tried the link below,but it appears to be broken. Best wishes Sharon From: Sheila <sheila@...>Subject: RE: What to do next???thyroid treatment Date: Thursday, October 15, 2009, 9:44 AM Your medical records belong to you, doctors cannot withhold your test results or anything else. Go hear to this link. http://f1.grp. fs.com/ v1/kOTWSrAzkjh95 5ScbO9Vio- lcyE147jwoaC4jH5 t7RPwk-rVzIvZtlI ArFSCYtsvKm6HzJo N3ypy_ElMhwBTOw/ NHS%20TREATMENT/ How%20to% 20access% 20your%20medical %20records. doc HiI've been chasing the hospital for results of my TRH test ( & ITT/GRNH)All I get is "Endo will call you in if there's a problem". After some argument, i've been told I can "write to my GP in 2 weeks".. Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!!Anyway, looks like I need to know if I have Antibodies. Does the TRH test measure Antibodies or should I write to my GP or Endo & ask for a separate blood test with Andibodies?ThanksIan No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 03:57:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 From: Sheila <sheila@...>Subject: RE: What to do next???thyroid treatment Date: Thursday, October 15, 2009, 9:44 AM Your medical records belong to you, doctors cannot withhold your test results or anything else. Go hear to this link. http://f1.grp. fs.com/ v1/kOTWSrAzkjh95 5ScbO9Vio- lcyE147jwoaC4jH5 t7RPwk-rVzIvZtlI ArFSCYtsvKm6HzJo N3ypy_ElMhwBTOw/ NHS%20TREATMENT/ How%20to% 20access% 20your%20medical %20records. doc HiI've been chasing the hospital for results of my TRH test ( & ITT/GRNH)All I get is "Endo will call you in if there's a problem". After some argument, i've been told I can "write to my GP in 2 weeks".. Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!!Anyway, looks like I need to know if I have Antibodies. Does the TRH test measure Antibodies or should I write to my GP or Endo & ask for a separate blood test with Andibodies?ThanksIan No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 03:57:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 No, not broken, but you can get direct to the information it contains here http://www.bbc.co.uk/dna/actionnetwork/A1181657 Luv - Sheila Hi Sheila, Tried the link below,but it appears to be broken. Best wishes Sharon Your medical records belong to you, doctors cannot withhold your test results or anything else. Go hear to this link. http://f1.grp. fs.com/ v1/kOTWSrAzkjh95 5ScbO9Vio- lcyE147jwoaC4jH5 t7RPwk-rVzIvZtlI ArFSCYtsvKm6HzJo N3ypy_ElMhwBTOw/ NHS%20TREATMENT/ How%20to% 20access% 20your%20medical %20records. doc Hi I've been chasing the hospital for results of my TRH test ( & ITT/GRNH) All I get is " Endo will call you in if there's a problem " . After some argument, i've been told I can " write to my GP in 2 weeks " .. Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!! Anyway, looks like I need to know if I have Antibodies. Does the TRH test measure Antibodies or should I write to my GP or Endo & ask for a separate blood test with Andibodies? Thanks Ian No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 03:57:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.422 / Virus Database: 270.14.20/2443 - Release Date: 10/20/09 03:55:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 Hi Sheila, Where do I go once on there,as its the BBC news and I cant see anything on there about medical records.Sorry. Best wishes Sharon Your medical records belong to you, doctors cannot withhold your test results or anything else. Go hear to this link. http://f1.grp. fs.com/ v1/kOTWSrAzkjh95 5ScbO9Vio- lcyE147jwoaC4jH5 t7RPwk-rVzIvZtlI ArFSCYtsvKm6HzJo N3ypy_ElMhwBTOw/ NHS%20TREATMENT/ How%20to% 20access% 20your%20medical %20records. doc HiI've been chasing the hospital for results of my TRH test ( & ITT/GRNH)All I get is "Endo will call you in if there's a problem". After some argument, i've been told I can "write to my GP in 2 weeks".. Why they can't give them me direct, I don't know?? The GP is in the dark ages, can't email or even print, they have to RE-TYPE everything!!Anyway, looks like I need to know if I have Antibodies. Does the TRH test measure Antibodies or should I write to my GP or Endo & ask for a separate blood test with Andibodies?ThanksIan No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.421 / Virus Database: 270.14.15/2434 - Release Date: 10/15/09 03:57:00 No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.422 / Virus Database: 270.14.20/2443 - Release Date: 10/20/09 03:55:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Plans are afoot at the moment to supply everyone who has a long term illness with small record books/files, to take along with them at doctors/hospital appointments. In these records will be all kinds of information, presumably including blood test results. Some diabetics have already been issued with one. I was, but have never used it. I think the reason is that nobody liked the design and the way it is layed out. On Monday at the course I am on, we were presented with several designs and asked which we would prefer. It was unanimously decided we liked the A5 size file where things could be put in or taken out or moved around, rather than the blue booklet. So it looks like there will be a time when you would 'have' to have your records. I think this is a sensible idea and as people get used to taking it to the doctors with them they will get used to keeping their own records as well. Lilian Quote Link to comment Share on other sites More sharing options...
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