Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 -----Original Message----- From: eGroups <notifyegroups> MAM-NSIF@... <MAM-NSIF@...> Date: Friday, October 13, 2000 1:32 AM Subject: Unable to deliver your message > >Your message was sent to a group that does not exist. Please check >to make sure you spelled the group name correctly. > >For further assistance, please email supportegroups >or visit help > Hi Donna, We (NSIF) try to be very cautious about physicians who want to 'solicit business' through our Foundation. For instance, there are a few doctors who are our allies & are most willing to provide us with very nice 'information packet' regarding their knowledge, research, etc. Yet, when we find out that they require a couple of thousand dollars, or more, to walk through their doors on the first visit, even though they can verify insurance coverage for that person, we are not so excited to refer women to them. Yet, there are a few doctors in TX, as well as other states, that operate this way with us. Yes, I will tell women about these very knowledgable doctors along with the financial requirements of these doctors, so they can make their decisions based on the best information we can provide them. I am a Certified Emplyee Benefit Consultant and have worked in the healthcare industry for nearly 20-years, so I know what is, and is not, reasonable for any doctor to request in the form of $$$ 'up-front'! However, I must tell you that I am continually amazed at how many women feel so desperate, they will pay this kind of money when they cannot possibly afford it, really. So, I am simply a messenger and have no control over what a doctor expects and/or demands prior to treatment, and those who agree to pay! Should all the solicitation stop? You bet it should! Can we do anything about it? Absolutely not, as long as women continue to feel so 'desperate'! All we can do is to continue to attempt to provide all women with the very best solid information we can, and we truly hope you will consider becoming one of us who helps the women find the right doctors for them. I doubt that many women realize how many doctors, I've made " business appointments " with, simply to talk about their views on our issue. I pay for this time, for the benefit of myself, my family, and my friends & sisters in this issue. If more of us participated in this activity, we could " weed out " alot of unfavorable doctors, and hopefully find more really great ones for our issue! Blessings, Martha M NSIF -----Original Message----- From: yesiam <yesiam@...> MARTHA <MAM-NSIF@...> Date: Friday, October 13, 2000 12:37 AM Subject: Re: Only One! >Thank you Martha, >I was begining to wonder if anyone was alive?! This sucks in a big way. > I am so happy there is someone good down there. I want to stop this >solitication of our women. What do you think about this? >Donna > >> MARTHA wrote: >> >> Hi Ladies, >> >> He is not the only one here taking this position. We have others, yet >> we do NOT jeopardize their stand on this issue in order to 'protect >> them' from manufacturers & others that might cause harm to them and/or >> their families. As I mentioned in an earlier post, we have a handful >> of PSs here and one Cardiovascular Surgeon, who will not re-implant a >> woman who has had any kind of problems with previous implants. >> >> Both and I will be happy to talk to any woman who is truly >> looking for a PS with this kind of integrity, yet we will not give >> these names out to 'just anybody', until we feel it's safe to refer a >> potential explant patient to these particular doctors. >> >> We do not want these physicians' names all over the internet, and do >> not think it's in the best interest of ALL to have these names freely >> provided 'en masse' to the public! We handle BI treating physicians >> with the same attempted protection so they can continue to treat those >> who need them most. They cannot help any of us much, once they have >> been 'harrassed out of business', as many of their predecessors were >> -- like finding dead freshly bleeding rabbits splattered on their >> front door & porch, etc. >> >> This is not appropriate information for the general public! If anyone >> doesn't understand this reasoning please send or I a personal >> email!! >> >> Martha Murdock >> NSIF / TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 -----Original Message----- From: MARTHA <MAM-NSIF@...> egroups < egroups> Date: Friday, October 13, 2000 1:42 AM Subject: Fw: Unable to deliver your message > >-----Original Message----- >From: eGroups <notifyegroups> >MAM-NSIF@... <MAM-NSIF@...> >Date: Friday, October 13, 2000 1:32 AM >Subject: Unable to deliver your message > > >> >>Your message was sent to a group that does not exist. Please check >>to make sure you spelled the group name correctly. >> >>For further assistance, please email supportegroups >>or visit help >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Martha Murdock, Director National Silicone Implant Foundation Dallas, Texas Headquarters ----- Original Message ----- From: " " <notify > <MAM-NSIF@...> Sent: Tuesday, March 13, 2001 12:05 AM Subject: Unable to deliver your message > > We are unable to deliver the message from <MAM-NSIF@...> > to <salinsupport >. > > Your message was sent to a group that does not exist. Please check > to make sure you spelled the group name correctly. > > For further assistance, please email support > or visit http://help./help/us/groups > http://www.dallasnews.com/science/health/309419_1Adrugs_12nat..html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Note: forwarded message attached. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Note: forwarded message attached. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Unable to deliver your message > > We are unable to deliver the message from <dgaribay@...> > to <MGBPostOp >. > > Your message was sent to a group that does not exist. Please check > to make sure you spelled the group name correctly. > > For further assistance, please email support > or visit http://help./help/us/groups/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Damn. Okay...If you want to see the Xray, please email me and let me know...I'll email it to you personally. -- Unable to deliver your message We are unable to deliver the message from <handd1@...>to < >.Your message was not delivered because it was too large. does not accept messages (including attachments) larger than 1 megabyte. To resend your message, please compress or delete any attachments so that the total message size is lessthan 1 megabyte.For further assistance, please email support or visit http://help./help/us/groups/ ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 this is the response i keep getting...no mater what i do...what is wrong!!! i've resized and everything..i've never had problems sending pics b4 brenda livingroom pics..ot > Date: Sun, 15 Sep 2002 20:44:12 -0700 > MIME-Version: 1.0 > Content-Type: multipart/mixed; > boundary= " ----=_NextPart_000_0050_01C25CF8.A606BF20 " > X-Priority: 3 > X-MSMail-Priority: Normal > X-Mailer: Microsoft Outlook Express 6.00.2600.0000 > X-MimeOLE: Produced By Microsoft MimeOLE V6.00.2600.0000 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Unable to deliver your message > > We are unable to deliver the message from <bryce.j@...> > to <uksurvivors >. > > The email address used to send your message is not subscribed to this > group. If you are a member of this group, please be aware that you may > only send messages to this group using the email address(es) you have > registered with . allows you to send messages > using the email address you originally used to register, or an alternate > email address you specify in your personal settings. > > If you would like to subscribe to this group: > 1. visit > uksurvivors/join > -OR- > 2. send email to uksurvivors-subscribe > > If you would like to specify an alternate email address: > 1. visit > myprefs?edit=2 > 2. type your alternate email address in the area labeled " Alternate > posting addresses " . > 3. click the " Save Changes " button > 4. wait approximately 10 minutes for the change to take effect > > After you follow these steps, you will be able to send messages > to all your groups using this alternate email address. > > For further assistance, please email support > or visit http://help./help/us/groups/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Unable to deliver your message We are unable to deliver the message from <jamkaye@...> to <CFSFMExperiental >. Your message was sent to a group that does not exist. Please check to make sure you spelled the group name correctly. For further assistance, please email support or visit http://help./help/us/groups/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 I saw the subject line, and I thought, " Why would someone post that? " Then I opened it and it dawned on me what had happened. You misspelled the group name. You forgot the m in the middle of the Experimental part of the e-mail address. I had to laugh, thinking about the sense of panic that you probably went through, thinking that the list had suddenly been dropped for some reason by . At least, I'd probably panic over it. Sometimes the littlest mistakes are so easy to miss. And PWC's like me make them a lot. So I can sympathize. lindaj@... Unable to deliver your message > > > > We are unable to deliver the message from <jamkaye@...> > to <CFSFMExperiental >. > > Your message was sent to a group that does not exist. Please check > to make sure you spelled the group name correctly. > > For further assistance, please email support > or visit http://help./help/us/groups/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 -----Original Message----- From: [mailto:notify ] Sent: Monday, June 28, 2004 9:21 AM ldelalande@... Subject: Unable to deliver your message We are unable to deliver the message from <ldelalande@...> to <lowdosenaltyrexone >. Your message was sent to a group that does not exist. Please check to make sure you spelled the group name correctly. For further assistance, please visit http://help./help/us/groups/ G'day all who post here I want to ask the Biomark people and all who are advertising stem cell treatment for MS , what is the biology behind the treatment ??? Would it be in conjunction with LDN?(which anecdotally has a relapse rate of 1 in 5 years) and doesnt seem to work anecdotally for everybody? But appears to halt the progression in a cross section of people. They do not know the mechanism that CAUSES MS .theories are a combination of environmental factors and genetics. There is considerable evidence that is is not autoimmune but it has an immune component. Do they intend to grow new brain cells from this treatment only to have them demyleinated again, because not enough is known about MS and EAE is being hotly disputed as a reasonable animal model??? What and where have they reported their "fantastic results"?? I write this because a NEW treatment which is having the results we all dream about has been reported and made available in the UK , for no money (if you are part of a trial) because it at this stage it seems to works.....it the goat serum from vaccinated goats.The onocologist in charge of the trial said that is was no use testing on animals because they didnt have the paticular pathway needed.....It is in its very early stages and they have both reported it and made participation in a trial available... (Check out new pathways magazine ...UK) Im not saying this is the magic bullet just comparing the modus operarandi of the researchers and their treatments. somebody whos going to pay out all this money for this stem cell treatment (its alot to me!) please ask some QUESTIONS and post the answers ! ..( ldn isnt a magic bullet either but it has alot going for it anecdotally) Louise (OZ) Please Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 -----Original Message----- From: [mailto:notify ] Sent: Monday, July 05, 2004 10:59 AM ldelalande@... Subject: Unable to deliver your message We are unable to deliver the message from <ldelalande@...> to <lowdosebaltrexone >. Your message was sent to a group that does not exist. Please check to make sure you spelled the group name correctly. For further assistance, please visit http://help./help/us/groups/ ,Are you doing LDN as well as the stem cell therapy?? That would make sense to prevent regenerated areas from being demyelinated again? Louise (OZ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 ----- Forwarded Message ----From: <notify >midwestscoli@...Sent: Friday, March 16, 2007 4:45:16 PMSubject: Unable to deliver your message We are unable to deliver the message from <midwestscoli@...>to < >.The email address used to send your message is not subscribed to this group. If you are a member of this group, please be aware that you may only send messages to this group using the email address(es) you have registered with . If you would like to subscribe to this group:1. visit /join-OR-2. send email to -subscribe For further assistance, please visit http://help./help/us/groups/ ette, I am five years post op and have had varying degrees of pain and numbness in my right leg & foot since immmediately after the surgery. I have seen several ortho docs & neurologists about this problem because at one time the pain was so severe I ended up in the ER. It is nerve pain. After an EMG the neuro said that there was nerve damage at L5 and S1 and there is nothing that can be done about it. I have taken a couple of different medications that were supposed to help, one being Neurontin. Didn't do a thing for me. For some reason, since my hip replacement, the nerve pain isn't quite as bad; it only bothers me when I lay down. The numbness is still there and probably always will be. Hope this helps. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Re: Adult stem cell therapy for Autism Nora, she didn't say specifically what she had tried, only " every treatment and therapy in the book for autism " (something like that if you read her post), so it is possible that she had already chelated her son, and did not see significant improvements. It would seem as if someone would most likely attempt to chelate before trying stem cell treatments, but I don't think we know for sure if she did. I think the mom (Corinne) posted on EOH just a month ago on another topic, so maybe she'll see this and let us know (if she is comfortable with sharing that info.). > > > yes.. I read this yesterday.. what are > > > the side effects? if any? Lia > > > > > > > > > > > > > > > --------------------------------- > > > See what's new at AOL.com and Make AOL Your > > > Homepage. > > > > > > > > > > > > > > > > > > --------------------------------- > > > Take the Internet to Go: Go puts the Internet > > > in your pocket: mail, news, photos & more. > > > > > > > > > __________________________________________________________ > > Shape in your own image. Join our Network Research Panel > today! http://surveylink./gmrs/_panel_invite.asp?a=7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Re: Adult stem cell therapy for Autism Nora, she didn't say specifically what she had tried, only " every treatment and therapy in the book for autism " (something like that if you read her post), so it is possible that she had already chelated her son, and did not see significant improvements. It would seem as if someone would most likely attempt to chelate before trying stem cell treatments, but I don't think we know for sure if she did. I think the mom (Corinne) posted on EOH just a month ago on another topic, so maybe she'll see this and let us know (if she is comfortable with sharing that info.). > > > yes.. I read this yesterday.. what are > > > the side effects? if any? Lia > > > > > > > > > > > > > > > --------------------------------- > > > See what's new at AOL.com and Make AOL Your > > > Homepage. > > > > > > > > > > > > > > > > > > --------------------------------- > > > Take the Internet to Go: Go puts the Internet > > > in your pocket: mail, news, photos & more. > > > > > > > > > __________________________________________________________ > > Shape in your own image. Join our Network Research Panel > today! http://surveylink./gmrs/_panel_invite.asp?a=7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Re: Adult stem cell therapy for Autism Nora, she didn't say specifically what she had tried, only " every treatment and therapy in the book for autism " (something like that if you read her post), so it is possible that she had already chelated her son, and did not see significant improvements. It would seem as if someone would most likely attempt to chelate before trying stem cell treatments, but I don't think we know for sure if she did. I think the mom (Corinne) posted on EOH just a month ago on another topic, so maybe she'll see this and let us know (if she is comfortable with sharing that info.). > > > yes.. I read this yesterday.. what are > > > the side effects? if any? Lia > > > > > > > > > > > > > > > --------------------------------- > > > See what's new at AOL.com and Make AOL Your > > > Homepage. > > > > > > > > > > > > > > > > > > --------------------------------- > > > Take the Internet to Go: Go puts the Internet > > > in your pocket: mail, news, photos & more. > > > > > > > > > __________________________________________________________ > > Shape in your own image. Join our Network Research Panel > today! http://surveylink./gmrs/_panel_invite.asp?a=7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi Carol, So glad that the light has gone on for at least one! I wonder what your GP will think- I hope he actually reads it. Hi there Sheila and all, I cannot belive it the consultant who gave me prescription telephoned me tonight, he told me he had been on some usa websites and the underactive thyroid can cause liver problems etc. He told me he would write the letter saying he will be responsible for me, he also said do not give up fighting for armour, he bellieves its a money issue rather than non prescription isssue although he thinks they are hiding behind that. I am so happy at the moment although he said he will be leaving his post later this year, he has at least found out about armour and he also said he will send some information to my GP, he told me to stop giving him the information. Carol X Be a better friend, newshound, and know-it-all with Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hope this is a starting point Sue Manchester Perhaps this will help lead you somewhere Sue Manchester _____ _____ From: [mailto: ] On Behalf Of sweetmelissa_79 Sent: Wednesday, January 09, 2008 12:08 PM Subject: [sPAM] Dwarfism Does anyone have any resources/references for how to estimate IBW for dwarfism? I am imagining the ideal would be an appropriate BMI of 18- 24.9 but wanted to be certain? Also, any ideas on how to estimate caloric needs? Thanks in advance. Sullivan, RD Medical Info Dwarfism TypesConditions & ComplicationsGeneral TopicsDwarfism Glossary Questions & Answers Frequently Asked QuestionsAsk A QuestionAbout LPAAbout the MRC Connect With Us! Contact usLittle People of America Legal DisclaimersPrivacy Policy Nutrition Color code legend Nutrition and the Little Person Source/Author: Dr. Judith G. Hall Appropriate weight management for people of short stature. Standard weight for height curves in achondroplasia. Source/Author: Hunter AG, Hecht JT, CI Jr. *Abstract for a scientific/medical article published in a health professional journal. In medical terminology. An abstract is a general overview of the article. The full article is rarely available online without a subscription to the publishing journal. Full articles may often be accessed through a medical school library. These abstracts are provided as references for those searching for information in addition to that available directly on the web.* Tube Feeding Source/Author: The MPS society Discussion of feeding through a gastrostomy tube (G-tube). Patients with significant neurologic or respiratory conditions may require a G-tube in order to be fed. Click on article title in order to download pdf. Ways To Cut Calories Source/Author: Jayne Telford Suggestions for cutting calories in one's diet. What Are Growth Disorders? Source/Author: Human Growth Foundation In layman's terms. Discusses: What Are Growth Disorders? What is Human Growth Hormone (HGH) Deficiency? What is Cushing's Syndrome (Cortisol, Stress, Hormone Excess)? What is Hypothyroidism? What is Nutritional Short Stature? What is Intrauterine Growth Retardation ("IUGR")? What is Silver Syndrome? What is Disproportionate Short Stature? What is Achondroplasia? What Are Growth Related Disorders? Poor Nutrition and Systemic Diseases; Bone Disorders Home | About the MRC | Privacy Policy | Disclaimers | Contact Us All content within the LPA Medical Resource Center, except where indicated, is ©2003 Little People of America, Inc. All rights reserved. All other articles, documents and publications herein are copyrighted by their respective authors and are used by express permission. No content herein may be used elsewhere without express written permission from the copyright holder(s). Use of this site constitutes acceptance of its disclaimers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Hello. My name is Ellis. I have a 22 month old daughter named Marissa. On May 29, an Infectious Disease doctor at Vanderbilt Children's Hospital here in Nashville, TN diagnosed her with . We have an appointment to see the Rhumeotogist July 28, and then the ID again in October. They put her on Tagament. She gets 1cc 3x a day. She was born 1 month early and only weighed 4pds 11oz. Despite this, she was a very healthy infant. She was not sick one time, until her first birthday. Less then one month later, she started running a high fever, throwing up, lethargic. We thought it was a virus and her pediatrician confirmed it. But 25 days later it happened again. Her fever got to 106 and she was so dehydrated that we took her to the ER. They said it was just a virus. This cycle continued every 25 days. And every time her pediatrician and the Doctors at the hospital said it was a virus. Then in February of 08 her fever got so high so quickly that she had a seizure so we took her back to the ER. They said she had an UTI. The next day was a Sunday so we dealt with it and gave her the medicine the ER doc prescribed. Monday morning we took her to her pediatrician and he said she did not have an UTI and it was just a virus. However, he told us if she threw up again to take her to the Children's hospital. Later that night she seemed to be getting worse so we took her in. That was a mistake. We waited around five hours before seeing a doctor in the ER, then we only got to see a nurse. She checked Marissa's ears, lungs and heart and said she was fine. Then she accused us of trying to dump her on them. The very next day Marissa was the same so our pediatrician told us to take her to another hospital ER. We waited five hours there, and when the doc saw us, the med they gave when the evaluated her was kicking in so her fever was low. We convinced the doc to give her some juice and wait. Sure enough, 20 minutes later she threw up and her fever spiked again. They then apologized to us and admitted her. She was in the hospital for a week. They did a spinal tap and every test they could think of and everything came back negative. Then I came down with the flu from their ER and they tested Marissa (who got it at the same time) and hers was positive. So they claimed she had the flu the entire time and released us. The cycle of course came back in 25 days and our pediatrician said it was just a virus. He said viruses could do this. We were tired of hearing this, so my husband and I started researching on our own. In April we moved to Spring Hill, Tn (around 30 miles south of Nashville). When she had her first episode after living here, I found a pediatrician here who was accepting new patients. I took her in along with a list of all her symptoms, every time she had been sick, and the research we had done. I told the doctor that I thought she had . He said that was what it looked like but he reminded us that it could be other things with some of the same symptoms. He made us an appointment with the ID and Rhumatogly at the Children's Hospital in Nashville. He then put her on Tagament and gave us some medicine for her vomiting. He called 3 times within 24 hours to check on her. He called before we went to bed, first thing in the morning, and at lunch. We didn't see him again before the ID appointment, but Marissa is having an episode right now. Actually I hope she is over it. I called him and told him she was having her episode and he said bring her in. He checked her and her throat was red, and her tonsils were swollen with ulcers on them. He then called and checked on her before bed yesterday, and this morning. I love him. He is a wonderful doctor who truly cares about his patients. He even offered to make a house call if I needed him to. For anyone who lives in Spring Hill, Tn his name is Doctor Myers with Tennessee Pediatrics. He is really busy with a wife, Five sons and a thriving practice, yet he makes time to check on his patients at home. That's my doctor. We will definitely stay with him through out Marissa's childhood. The anti nausea medicine works great. As for the Tagament. I think it is working. She has only been on it for a month. Her episode this time only lasted two days with the fever and the fever never got to high. The episode came after 29 days instead of 25. However, we think maybe it started earlier. Around two days before the fever started she started acting like her bones were hurting her again, and not wanting to eat. We are not sure about it though. We gladly welcome anyone who has any information to share or to share your story. She was just diagnosed so we are still learning. Thank you. (please ignore any misspelled words) Ellis Spring Hill, TN Mother of 22month old Marissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 I am so glad you found a caring Doctor. We had a search as well to find a Doctor who knew about and was open to believing it was something other than viruses. We moved out of state about 6 months ago and I was so happy to find another Doctor who is aware of and PFS conditions. I feel lucky. I had several frustrating visits to the ER with our son, just turning 2.5yrs old. Our original Pediatrician was wonderful until Tyler started having his fevers. He just kept telling us he was catching viruses. Strange how it returned every 2 weeks and the symptoms were always the same. Anyway....I just wanted to let you know I am glad you found a Doctor for your little one that isn't close minded. We also saw a Pediatric Rheumatologist for our son. She put him on Naproxen (Naprosyn) and it has dropped his fevers from always running 105-106 to now 102-103. His fevers also climb quickly and used to cause vomiting every episode. Now that he is on naproxen he has only vomitted a few times in over a year! Naproxen is also known over the counter as Aleve another anti-inflammatory. He takes liquid which you can only get by prescription. I don't give him Motrin anymore at all, which is good because he always had a really hard time keeping it down. I hope you read more on here if you haven't already. There are other conditions that can cause recurring fevers and some have complications. We did some DNA testing to rule out a few. Best of luck with the Rheumatologist appt! Pruden Tyler 2.5yrs old fevering since 3 months, undetermined PFS Dylan 2 months old Vancouver WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 I am so glad you found a caring Doctor. We had a search as well to find a Doctor who knew about and was open to believing it was something other than viruses. We moved out of state about 6 months ago and I was so happy to find another Doctor who is aware of and PFS conditions. I feel lucky. I had several frustrating visits to the ER with our son, just turning 2.5yrs old. Our original Pediatrician was wonderful until Tyler started having his fevers. He just kept telling us he was catching viruses. Strange how it returned every 2 weeks and the symptoms were always the same. Anyway....I just wanted to let you know I am glad you found a Doctor for your little one that isn't close minded. We also saw a Pediatric Rheumatologist for our son. She put him on Naproxen (Naprosyn) and it has dropped his fevers from always running 105-106 to now 102-103. His fevers also climb quickly and used to cause vomiting every episode. Now that he is on naproxen he has only vomitted a few times in over a year! Naproxen is also known over the counter as Aleve another anti-inflammatory. He takes liquid which you can only get by prescription. I don't give him Motrin anymore at all, which is good because he always had a really hard time keeping it down. I hope you read more on here if you haven't already. There are other conditions that can cause recurring fevers and some have complications. We did some DNA testing to rule out a few. Best of luck with the Rheumatologist appt! Pruden Tyler 2.5yrs old fevering since 3 months, undetermined PFS Dylan 2 months old Vancouver WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 I am so glad you found a caring Doctor. We had a search as well to find a Doctor who knew about and was open to believing it was something other than viruses. We moved out of state about 6 months ago and I was so happy to find another Doctor who is aware of and PFS conditions. I feel lucky. I had several frustrating visits to the ER with our son, just turning 2.5yrs old. Our original Pediatrician was wonderful until Tyler started having his fevers. He just kept telling us he was catching viruses. Strange how it returned every 2 weeks and the symptoms were always the same. Anyway....I just wanted to let you know I am glad you found a Doctor for your little one that isn't close minded. We also saw a Pediatric Rheumatologist for our son. She put him on Naproxen (Naprosyn) and it has dropped his fevers from always running 105-106 to now 102-103. His fevers also climb quickly and used to cause vomiting every episode. Now that he is on naproxen he has only vomitted a few times in over a year! Naproxen is also known over the counter as Aleve another anti-inflammatory. He takes liquid which you can only get by prescription. I don't give him Motrin anymore at all, which is good because he always had a really hard time keeping it down. I hope you read more on here if you haven't already. There are other conditions that can cause recurring fevers and some have complications. We did some DNA testing to rule out a few. Best of luck with the Rheumatologist appt! Pruden Tyler 2.5yrs old fevering since 3 months, undetermined PFS Dylan 2 months old Vancouver WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 --- , Thank you so much. I have never heard of them putting a child on naproxen. I'm glad it helped. The Infectious Disease doctor did not run any tests. I am not sure why. It was like she listened to what our pediatrician said, listened to us and our research and then based everything on that. We are hoping that the Rheumtologist will run test just to rule out anything else. I read everything everyone posts on here and the back logs too. I am trying to educate myself more on this disease or syndrome. What is it classified as? I will keep everyone posted on what goes on? Right now, her previous episode, well with the fever only lasted 2 days. But we think it started 2 days earlier because she didn't want to eat or drink and she acted like her bones in her legs, stomach, and back hurt her. Then 2 days after she started that her fever started, which didn't get over 102 this time. It lasted for 2 days with one little vomiting episode. I believe the tagament is working. I guess the real test will be in 25 days. Ellis Mother of 22month Marissa Spring Hill, Tn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 --- , Thank you so much. I have never heard of them putting a child on naproxen. I'm glad it helped. The Infectious Disease doctor did not run any tests. I am not sure why. It was like she listened to what our pediatrician said, listened to us and our research and then based everything on that. We are hoping that the Rheumtologist will run test just to rule out anything else. I read everything everyone posts on here and the back logs too. I am trying to educate myself more on this disease or syndrome. What is it classified as? I will keep everyone posted on what goes on? Right now, her previous episode, well with the fever only lasted 2 days. But we think it started 2 days earlier because she didn't want to eat or drink and she acted like her bones in her legs, stomach, and back hurt her. Then 2 days after she started that her fever started, which didn't get over 102 this time. It lasted for 2 days with one little vomiting episode. I believe the tagament is working. I guess the real test will be in 25 days. Ellis Mother of 22month Marissa Spring Hill, Tn Quote Link to comment Share on other sites More sharing options...
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