Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 , NIH is wonderful and if you live close I would definitely go. You need to contact Plass she is the research coordinator RN for Dr. Kastner the Director of the Fever Studies. Has you son Evan had any genetic studies? Have they ruled out Cyclic Neutropenia?? The NIH is where NUMEROUS mutations for the genetic disorders have been isolated in the last few years. They are very knowledgeable. It is comforting seeing these physicians. We stay at the Children's Inn. you probably will not need to do that but you would need to arrive early as check-in onto the property takes a while. You would need a letter from the doctor who sees your little one summarizing the symptoms. And you need the pertinent lab data such as those taken during fevers when the WBC's, SED rate and CRP elevate.. Any immunoglobulin studies that may have been done and complement studies and any other studies for virus strains such as PARVO or Epstein Barr . etc. Gather that and fax ALL of it to . We have ALL the contact info at the website and I can give you 's email to initiate contact. On average it takes about 2-3 months to get called and then a month or so to get the actual appointment. Your proximity will help if they get a cancellation. The initial visit is usually a day. Evaluations and then lab work. On average it takes 3 months to get the genetic studies back. Keep a log of the fevers, and include ALL symptoms related. ALSO track the height of the fevers as well as anything that seems strange. Your child is young so he is not going to communicate as well as older children. I have been there. it is difficult when they are young. I feel comfort just having my son followed at the NIH. Once the specimen for his genetic studies is there. as newer mutations are isolated the NIH is able to call you and ask you if they may check his blood again. (if negative). is not genetic but in the years we have had this group I have found dozens of children who finally went to NIH and had testing and found out they did have a genetic mutation. The treatment is different so it is important and the onset of secondary disorders is possible with genetic disorders. so it is really important to get an accurate diagnosis. God Bless You, Fran Fran Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi Fran, Thank you so much for all your wonderful answers to my questions. I will definitely check into getting him in to NIH. Evan has not had any genetic studies or been tested for Cyclic Neutropenia. Just a blood culture to rule out cancer, arthritis, etc. and a urinalysis to rule out a bladder infection. All of which came back negative. The bloodwork showed he was a little anemic, but nothing else. I'm grateful the doctor figured out it was instead of just dismissing that it was " just a virus " as other docs had done. I really would like to meet with the doc at NIH since they know so much more about it and could help to rule out other conditions. Thanks again! > > , > > NIH is wonderful and if you live close I would definitely go. > > > > You need to contact Plass she is the research coordinator RN for Dr. > Kastner the Director of the Fever Studies. Has you son Evan had any > genetic studies? Have they ruled out Cyclic Neutropenia?? The NIH is where > NUMEROUS mutations for the genetic disorders have been isolated in the last > few years. > > > > They are very knowledgeable. It is comforting seeing these physicians. We > stay at the Children's Inn. you probably will not need to do that but you > would need to arrive early as check-in onto the property takes a while. > > > > You would need a letter from the doctor who sees your little one summarizing > the symptoms. And you need the pertinent lab data such as those taken during > fevers when the WBC's, SED rate and CRP elevate.. Any immunoglobulin studies > that may have been done and complement studies and any other studies for > virus strains such as PARVO or Epstein Barr . etc. > > > > Gather that and fax ALL of it to . We have ALL the contact info at the > website and I can give you 's email to initiate contact. > > > > On average it takes about 2-3 months to get called and then a month or so > to get the actual appointment. Your proximity will help if they get a > cancellation. The initial visit is usually a day. Evaluations and then lab > work. On average it takes 3 months to get the genetic studies back. > > > > Keep a log of the fevers, and include ALL symptoms related. ALSO track the > height of the fevers as well as anything that seems strange. Your child is > young so he is not going to communicate as well as older children. I have > been there. it is difficult when they are young. > > > > I feel comfort just having my son followed at the NIH. Once the specimen for > his genetic studies is there. as newer mutations are isolated the NIH is > able to call you and ask you if they may check his blood again. (if > negative). is not genetic but in the years we have had this group I > have found dozens of children who finally went to NIH and had testing and > found out they did have a genetic mutation. The treatment is different so it > is important and the onset of secondary disorders is possible with genetic > disorders. so it is really important to get an accurate diagnosis. > > > > God Bless You, > Fran > > Fran Bulone > > Mom to ph 7 yrs old > Waxhaw, NC > > Owner & Moderator Group > <> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 > I had just wanted to add that I just talked to the folks at NIH this past week and got my paper work from them to take to my Dr telling them what they need to send. They told me that form the time they receive ALL of my daughters paperwork it will be now 6 months to a year unitl the next contacvt is made because it is so busy there. Just thought I would pass along the info. Good luck. Lori Mom to 21 months > From: " Fran Bulone " <fbulone@...> > Date: 2006/06/17 Sat PM 04:26:47 EDT > < > > Subject: RE: New with questions:) > > , > > NIH is wonderful and if you live close I would definitely go. > > > > You need to contact Plass she is the research coordinator RN for Dr. > Kastner the Director of the Fever Studies. Has you son Evan had any > genetic studies? Have they ruled out Cyclic Neutropenia?? The NIH is where > NUMEROUS mutations for the genetic disorders have been isolated in the last > few years. > > > > They are very knowledgeable. It is comforting seeing these physicians. We > stay at the Children's Inn. you probably will not need to do that but you > would need to arrive early as check-in onto the property takes a while. > > > > You would need a letter from the doctor who sees your little one summarizing > the symptoms. And you need the pertinent lab data such as those taken during > fevers when the WBC's, SED rate and CRP elevate.. Any immunoglobulin studies > that may have been done and complement studies and any other studies for > virus strains such as PARVO or Epstein Barr . etc. > > > > Gather that and fax ALL of it to . We have ALL the contact info at the > website and I can give you 's email to initiate contact. > > > > On average it takes about 2-3 months to get called and then a month or so > to get the actual appointment. Your proximity will help if they get a > cancellation. The initial visit is usually a day. Evaluations and then lab > work. On average it takes 3 months to get the genetic studies back. > > > > Keep a log of the fevers, and include ALL symptoms related. ALSO track the > height of the fevers as well as anything that seems strange. Your child is > young so he is not going to communicate as well as older children. I have > been there. it is difficult when they are young. > > > > I feel comfort just having my son followed at the NIH. Once the specimen for > his genetic studies is there. as newer mutations are isolated the NIH is > able to call you and ask you if they may check his blood again. (if > negative). is not genetic but in the years we have had this group I > have found dozens of children who finally went to NIH and had testing and > found out they did have a genetic mutation. The treatment is different so it > is important and the onset of secondary disorders is possible with genetic > disorders. so it is really important to get an accurate diagnosis. > > > > God Bless You, > Fran > > Fran Bulone > > Mom to ph 7 yrs old > Waxhaw, NC > > Owner & Moderator Group > <> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi It was taking 6-9 months to be called for an appointment before the split. Submit your info DIRECT to Plass and then send her an email about a month later asking for an update and if your child's medical records were reviewed by Dr. Kastner. The newer people who recently joined the study on average have been called within 3 months. Also if you contact the general study line, they are STILL giving the incorrect nurse's name. Beverly Barhnam is the ADULT fever disorder nurse and Plass is the pediatric research fever nurse. ALL info MUST be faxed to . The research hotline is continuing to give misinformation. I have submitted a letter and hope they will update their info!! Hope this helps. Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 > Thank goodness for this group. Thank you for your help and I will be sure to take your advice. I truly appreciate it. Lori Mom of 21 months (possible ) > From: " Fran Bulone " <fbulone@...> > Date: 2006/06/18 Sun PM 07:48:14 EDT > < > > Subject: RE: RE: New with questions:) > > > > Hi > > It was taking 6-9 months to be called for an appointment before the split. > Submit your info DIRECT to Plass and then send her an email about a > month later asking for an update and if your child's medical records were > reviewed by Dr. Kastner. > > > > The newer people who recently joined the study on average have been called > within 3 months. > > Also if you contact the general study line, they are STILL giving the > incorrect nurse's name. Beverly Barhnam is the ADULT fever disorder nurse > and Plass is the pediatric research fever nurse. > > > > ALL info MUST be faxed to . The research hotline is continuing to give > misinformation. I have submitted a letter and hope they will update their > info!! > > > > Hope this helps. > Fran > > Fran A Bulone > Mom to ph 7 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 Hi, I was just diagnosed with systemic lupus, and I am extremely anxious about it. The fluorscent lights at work bother my eyes; my skin has a red rash all over it, and my joints ache. I currently am not on any medication because my doctor says he's hesitant about prescribing " strong " medicines. Which is fine but...I am feeling really miserable, shaky, and in pain, plus itchy with the skin rash. I also am trying to find a sunscreen and moisturizer I can use without exacerbating it all. Help?! thanks, joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 Joanne, is your doctor a rheumatologist? It doesn't sound like what a rheumatologist would tell you. These autoimmune diseases need to be treated aggressively from the start. Sue On Feb 24, 2010, at 5:36 PM, Joanne wrote: > Hi, > I was just diagnosed with systemic lupus, and I am extremely anxious > about it. The fluorscent lights at work bother my eyes; my skin has > a red rash all over it, and my joints ache. I currently am not on > any medication because my doctor says he's hesitant about > prescribing " strong " medicines. Which is fine but...I am feeling > really miserable, shaky, and in pain, plus itchy with the skin > rash. I also am trying to find a sunscreen and moisturizer I can > use without exacerbating it all. > Help?! Quote Link to comment Share on other sites More sharing options...
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