Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 I'm confused about growing out of . Does anyone reading have experience or knowledge about it? Do kids always grow out of it? sometimes? Do the fevers tend to get less frequent in time? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 HI! i'm new here (please excuse my english i'm french ) i suffer from syndrom more or less since i was born. I am 22 years old today. I Grew out well but syndrom is still here ! i have to say that the crises are very less frequent. i've had fever like 3 or 4 times this year, lasting a couple of days. what's more, the crisis are less important (less fever, less throat aches...)My doctor gives me prednisone. Apparently symptoms tend to fade while you grow up. If anyone here knows adults with i'd be glad to talk to them cause i always hear about children but never how they grow up ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Lee, How interesting your story is. Could you share with us your insight into how it " feels " to have periodic fevers? My son is almost 4 and has had fevers since 8 months old. He is so often complaining of ankle and leg pain and stomach pain as are so many of these little ones. As you know from having feverish little ones of your own, it is difficult not knowing how they are feeling. Have you had joint or muscle pain? Can you tell when an episode is coming on? How do es it feel? Thanks so much for sharing. So happy you are healthy otherwise. Pam mother of (almost 4)(periodic fevers) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Dawn, I'm certainly no expert... we have just seen an Immunologist specialist once (earlier in February). Our daughter was tested for several other conditions, and all came back as negative, so the current informal diagnosis is still . Our daughter has the classic symptoms (very high fevers up to 107, red, strep-like throat, enlarged lymph nodes, mouth ulcers). Her fevers are not an an exact cycle - ranges from 29-57 days, each lasting 4-7 days. She has not had any other symptoms like sore joints or stomach issues (as far as we can tell to date). Given her history (fevers starting with ear infections at about 9 months, and then fevers with like symptoms starting around 12 months - the specialist indicated she thought that le would outgrow the fevers around 5-6 years old. She indicated that some of her cases were outgrowing in the 7-8 year old range, but that the onset of for them was a little older. But, it seems like the cases most have on this website forum are experiencing up to 10 years or even teen age. Our specialist indicated it should not last that long. She has approximately 20-25 cases. Again - I'm no expert, but I'm certainly hoping she's right. It certainly gave us a ray of hope. Ginger Mother of le, 19 months - most likely . ________________________________ From: [mailto: ] On Behalf Of dawn_menken Sent: Monday, February 26, 2007 3:03 PM Subject: growing out of Hello All, Touching to hear everyone's stories and our struggle to live with much uncertainty. Nice to have the support of this string. Is there anyone on this string who is an older teen or adult? Since has only existed as a diagnosis since 1987, there is really no long term study that I am aware of. I would be interested in knowing how " older " people are dealing with . I imagine most of the people who have grown out of it are not on this string. I have also been researching alternative paradigms that see as an autoimmune disorder. Therefore, I am interested if there is any information out there of older teens or adults developing more autoimmune type things, like rheumatoid arthritis, juvenile diabetes, chronic fatigue etc. many thanks to all, Dawn from Portland, mother to THeo age 5 who has had since infancy ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Ginger, My daughter has had fevers since about 6 mo. old. She was diagnosed with about a year and a half ago. She has not had a fever since last October. I am hoping she is outgrowing this. One thing she still does get though is run down and mouth sores. All around the 22nd of every month. Just no fever. Good Luck and God Bless. mother of (4yrs old) @...: ginger.hackett@...: Tue, 27 Feb 2007 14:30:34 -0500Subject: RE: growing out of Dawn, I'm certainly no expert... we have just seen an Immunologist specialist once (earlier in February). Our daughter was tested for several other conditions, and all came back as negative, so the current informal diagnosis is still . Our daughter has the classic symptoms (very high fevers up to 107, red, strep-like throat, enlarged lymph nodes, mouth ulcers). Her fevers are not an an exact cycle - ranges from 29-57 days, each lasting 4-7 days. She has not had any other symptoms like sore joints or stomach issues (as far as we can tell to date). Given her history (fevers starting with ear infections at about 9 months, and then fevers with like symptoms starting around 12 months - the specialist indicated she thought that le would outgrow the fevers around 5-6 years old. She indicated that some of her cases were outgrowing in the 7-8 year old range, but that the onset of for them was a little older. But, it seems like the cases most have on this website forum are experiencing up to 10 years or even teen age. Our specialist indicated it should not last that long. She has approximately 20-25 cases. Again - I'm no expert, but I'm certainly hoping she's right. It certainly gave us a ray of hope. Ginger Mother of le, 19 months - most likely . ________________________________ From: [mailto: ] On Behalf Of dawn_menken Sent: Monday, February 26, 2007 3:03 PM Subject: growing out of Hello All, Touching to hear everyone's stories and our struggle to live with much uncertainty. Nice to have the support of this string. Is there anyone on this string who is an older teen or adult? Since has only existed as a diagnosis since 1987, there is really no long term study that I am aware of. I would be interested in knowing how " older " people are dealing with . I imagine most of the people who have grown out of it are not on this string. I have also been researching alternative paradigms that see as an autoimmune disorder. Therefore, I am interested if there is any information out there of older teens or adults developing more autoimmune type things, like rheumatoid arthritis, juvenile diabetes, chronic fatigue etc. many thanks to all, Dawn from Portland, mother to THeo age 5 who has had since infancy ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Pam, The only good thing about having fever attacks is that I know exactly how my children are feeling. My own fever attacks consist of a couple of days feeling it coming on. Feeling drained, washed out, weak, generally starting to ache. Then I wake up one morning feeling really ill. temperature lower in the morning but soon going up to 104-105 degrees. Cant sit up, can only lay down. Hard to keep my eyes open but cant sleep. And the worse thing about it, 'the ill feeling' a general pain that runs throught my body. The only time it stops is when taking a general painkiller like paracetamol or 'disprins' a UK painkiller dont know if you have that brand in the US. Thats when I can sleep. Ill have a sore red throat and swollen glands in my neck. I dont want to eat anything. Evening time the temperature is highest, feel the worse and then start vomiting, even when theres nothing in my stomach to vomit, a foul tasting black liquid comes up. This goes on throughout the night. Can only sleep intermittently. The next day the same thing and indeed, 3 bad days in total.....then on the 3rd night I'll start sweating, So much so, the sheets have to be changed. The next morning temperature is down, feeling a little better. Each time I take a painkiller I have a sweat, a good sign, with each sweat I start to feel better. 2 days later I have recovered from the attack. I havent eaten so Ive lost about 7lbs. I still feel tired and weak and its not for another 2 weeks when im fully well again. I never had a skin rash, or convulsions, or anything wrong with my eyes and never really had abdominal pain, only where I had strained my stomach from vomiting so much. And I never really had joint or leg pains. Although any old joint or muscle injuries always start to hurt while im generally run down, and can feel them during a fever attack. A friend of mine has a normal healthy child who often complains of pains in his legs which they call 'growing pains'. neither I or my children ever had 'growing pains' but I would imagine that this would hurt during a fever attack. Lee Wells 48 father of 19 and Darren 17 All with periodic fever Southend on Sea, England > > Lee, > How interesting your story is. Could you share with us your insight > into how it " feels " to have periodic fevers? My son is almost 4 and > has had fevers since 8 months old. He is so often complaining of > ankle and leg pain and stomach pain as are so many of these little > ones. As you know from having feverish little ones of your own, it is > difficult not knowing how they are feeling. > Have you had joint or muscle pain? Can you tell when an episode is > coming on? How do es it feel? > Thanks so much for sharing. So happy you are healthy otherwise. > > Pam > mother of (almost 4)(periodic fevers) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 I'm curious where you live, that your doctor has 20 - 25 cases, we go to St. Louis Childrens and they said they only have around 5 cases. " Hackett, Ginger " <ginger.hackett@...> wrote: Dawn, I'm certainly no expert... we have just seen an Immunologist specialist once (earlier in February). Our daughter was tested for several other conditions, and all came back as negative, so the current informal diagnosis is still . Our daughter has the classic symptoms (very high fevers up to 107, red, strep-like throat, enlarged lymph nodes, mouth ulcers). Her fevers are not an an exact cycle - ranges from 29-57 days, each lasting 4-7 days. She has not had any other symptoms like sore joints or stomach issues (as far as we can tell to date). Given her history (fevers starting with ear infections at about 9 months, and then fevers with like symptoms starting around 12 months - the specialist indicated she thought that le would outgrow the fevers around 5-6 years old. She indicated that some of her cases were outgrowing in the 7-8 year old range, but that the onset of for them was a little older. But, it seems like the cases most have on this website forum are experiencing up to 10 years or even teen age. Our specialist indicated it should not last that long. She has approximately 20-25 cases. Again - I'm no expert, but I'm certainly hoping she's right. It certainly gave us a ray of hope. Ginger Mother of le, 19 months - most likely . ________________________________ From: [mailto: ] On Behalf Of dawn_menken Sent: Monday, February 26, 2007 3:03 PM Subject: growing out of Hello All, Touching to hear everyone's stories and our struggle to live with much uncertainty. Nice to have the support of this string. Is there anyone on this string who is an older teen or adult? Since has only existed as a diagnosis since 1987, there is really no long term study that I am aware of. I would be interested in knowing how " older " people are dealing with . I imagine most of the people who have grown out of it are not on this string. I have also been researching alternative paradigms that see as an autoimmune disorder. Therefore, I am interested if there is any information out there of older teens or adults developing more autoimmune type things, like rheumatoid arthritis, juvenile diabetes, chronic fatigue etc. many thanks to all, Dawn from Portland, mother to THeo age 5 who has had since infancy ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Dear Lee, You don't know how helpful it is to hear about experiences. Thank you so much for sharing them. Interesting that oxytetracycline was used with such good effect for you and yet it is drug that as of yet hasn't been mentioned in these discussions. I will definitely look into it. It is also surprising that your children have as well since we have been told there is no hereditary link. I am relieved to hear from you that you and your family are all well. Wishing you the best, Dawn -- In , " jasonstormuk " <frostythesnowman999@...> wrote: > > > > > Hello Dawn, > > I am a 48 year old man in England. I have suffered with periodic > fever all my life. > > When I was an infant I used to get the fevers, lasting around 5 days, > every 6 weeks or so. 104 temperatures. Swollen neck glands, sore > throat, vomiting. But no rash and no joint pains. > > This was in the 60s. My tonsils were removed when I was 7, and that > did slow the frequency down to once or twice a year. Up until I > started going to work age 17. The fevers then increased in frequency > to every 7 weeks like clockwork. > > I then started seeing doctors, this was late 70s early 80s, and > stayed in hospital 3 times during attacks for extensive tests. No > doctor had any idea what caused it. The fevers continued like this > for about 5 years. Then around 1982, I was given 6 months supply of > the general antibiotic oxytetracycline, prescribed originally for > acne. > > To my amazement I wasnt Ill during that time. Once i stopped taking > it, the fevers returned. The doctors told me that as it stopped the > fevers, there was no reason I couldnt take them for the rest of my > life. So to this day I do. For 25 years I have been virtually fever > free. Ive tried stopping the tablets on a couple of occasions and the > fever returns. > > I did have a fever at the beginning of this year, while ive been > taking the tablets. However I do think this was a virus this time > which everyone seemed to be getting. My symptoms though were the > typical fever. Every bout of Illness Ive ever had has been a fever, > Ive never had anything else. I havent developed arthritis (yet), or > diabetes or chronic fatigue. I am very fit, work out at the gym with > weights 3 times a weeks, which I have done for 25 years. And Im out > salsa dancing at least 4 nights a week. > > I have a daughter, now 19, and a son Darren 17. Both of them > have periodic fever, with exactly the same symptoms as me. We > attended the 'world famous' Great Ormond street childrens hospital > for 10 years. Originally the doctors knew nothing about our recurring > fevers up until around 1998 when we were told we had . > > Our doctor assured me that my children would grow out of it, > something I found hard to believe as this wasn't my own experience. > In the meantime we tried prednisolone and had the same experience as > everyone else on here, It stopped the fever immediately but reocurred > 2 weeks later. So I stopped the prednisolone. Although their tonsils > seemed to be infected with white 'cotton wool' like growths during an > attack, it was decided not to remove their tonsils as it didnt stop > my own fevers. > > The frequency of the fever attacks did slow down as my children got > older, sometimes going 4 months between attacks. Darren now seems to > have grown out of it, and hasnt had a fever attack for about 4 years. > , who has it more frequently and more severe than Darren, took > oxytetracyline for around 18 months, starting age 15. The fevers > became less severe but didnt stop completely. So she stopped > oxytetracycline. She now goes for up to year fever free and when she > does get an attack, it is fairly mild, she can take general > painkillers throughout the day and can still manage to go to work. > > So from our experience the long term outlook is good and none of us > have developed anything more sinister. In fact we were told that due > to the unusually large amount of 'killer cells' we had in our bodies, > we wouldnt die if we had meningitis and we shouldnt get cancer! > > I hope this helps > > best regards > > Lee Wells 48 > > father to 19 and Darren17 > > Southend on Sea, England. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Oxytetracycline is a antibiotic for general bacterial infections. I was prescribed it for acne and given 6 months supplyoriginally. Its only by accident that it has been discovered to work for me. It takes around 3 months to take full effect, I had fever during the initial period but much less severe, then after 3 months fever free!. The doctors that I have seen have never really looked into why it works for me. As I said my daughter took it for 18 months but it didnt stop her fevers completely, just reduced the severity. Now she has stopped taking it her attacks are no worse. It can only be used for adults though because it affects bones and teeth while children are still growing, So not really much help for the children on here unfortunately. > > > > > > > > > > Hello Dawn, > > > > I am a 48 year old man in England. I have suffered with periodic > > fever all my life. > > > > When I was an infant I used to get the fevers, lasting around 5 > days, > > every 6 weeks or so. 104 temperatures. Swollen neck glands, sore > > throat, vomiting. But no rash and no joint pains. > > > > This was in the 60s. My tonsils were removed when I was 7, and that > > did slow the frequency down to once or twice a year. Up until I > > started going to work age 17. The fevers then increased in > frequency > > to every 7 weeks like clockwork. > > > > I then started seeing doctors, this was late 70s early 80s, and > > stayed in hospital 3 times during attacks for extensive tests. No > > doctor had any idea what caused it. The fevers continued like this > > for about 5 years. Then around 1982, I was given 6 months supply of > > the general antibiotic oxytetracycline, prescribed originally for > > acne. > > > > To my amazement I wasnt Ill during that time. Once i stopped taking > > it, the fevers returned. The doctors told me that as it stopped the > > fevers, there was no reason I couldnt take them for the rest of my > > life. So to this day I do. For 25 years I have been virtually fever > > free. Ive tried stopping the tablets on a couple of occasions and > the > > fever returns. > > > > I did have a fever at the beginning of this year, while ive been > > taking the tablets. However I do think this was a virus this time > > which everyone seemed to be getting. My symptoms though were the > > typical fever. Every bout of Illness Ive ever had has been a fever, > > Ive never had anything else. I havent developed arthritis (yet), or > > diabetes or chronic fatigue. I am very fit, work out at the gym > with > > weights 3 times a weeks, which I have done for 25 years. And Im out > > salsa dancing at least 4 nights a week. > > > > I have a daughter, now 19, and a son Darren 17. Both of them > > have periodic fever, with exactly the same symptoms as me. We > > attended the 'world famous' Great Ormond street childrens hospital > > for 10 years. Originally the doctors knew nothing about our > recurring > > fevers up until around 1998 when we were told we had . > > > > Our doctor assured me that my children would grow out of it, > > something I found hard to believe as this wasn't my own experience. > > In the meantime we tried prednisolone and had the same experience > as > > everyone else on here, It stopped the fever immediately but > reocurred > > 2 weeks later. So I stopped the prednisolone. Although their > tonsils > > seemed to be infected with white 'cotton wool' like growths during > an > > attack, it was decided not to remove their tonsils as it didnt stop > > my own fevers. > > > > The frequency of the fever attacks did slow down as my children got > > older, sometimes going 4 months between attacks. Darren now seems > to > > have grown out of it, and hasnt had a fever attack for about 4 > years. > > , who has it more frequently and more severe than Darren, took > > oxytetracyline for around 18 months, starting age 15. The fevers > > became less severe but didnt stop completely. So she stopped > > oxytetracycline. She now goes for up to year fever free and when > she > > does get an attack, it is fairly mild, she can take general > > painkillers throughout the day and can still manage to go to work. > > > > So from our experience the long term outlook is good and none of us > > have developed anything more sinister. In fact we were told that > due > > to the unusually large amount of 'killer cells' we had in our > bodies, > > we wouldnt die if we had meningitis and we shouldnt get cancer! > > > > I hope this helps > > > > best regards > > > > Lee Wells 48 > > > > father to 19 and Darren17 > > > > Southend on Sea, England. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 I'm in Atlanta. Dr. Kobrynski with Emory is the Immunologist that we've seen. She was fantastic, though very hard to get in to see. Ironically, there are two other children in our pediatric practice that have been diagnosed with . Both are older than my daughter (19 months) - and one saw Dr. Kobrynski for the first time this year though he is 7 years old I think. I don't know much more, as they don't disclose much information, for privacy reasons. ~Ginger Systems Solutions Principal, CAR Financial Services Work: (770) 206-6201 Cell: (770) 823-2871 TREO: (404) 915-5035 Sent from my TREO; thus, please excuse any typos. (Especially with missing p's - that key sticks!) growing out of Hello All, Touching to hear everyone's stories and our struggle to live with much uncertainty. Nice to have the support of this string. Is there anyone on this string who is an older teen or adult? Since has only existed as a diagnosis since 1987, there is really no long term study that I am aware of. I would be interested in knowing how " older " people are dealing with . I imagine most of the people who have grown out of it are not on this string. I have also been researching alternative paradigms that see as an autoimmune disorder. Therefore, I am interested if there is any information out there of older teens or adults developing more autoimmune type things, like rheumatoid arthritis, juvenile diabetes, chronic fatigue etc. many thanks to all, Dawn from Portland, mother to THeo age 5 who has had since infancy ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Trish, My son also goes to St. Louis Childrens & see's Dr. Orscheln. She has only has several patients as well. Who do you see there? Melody > > I'm curious where you live, that your doctor has 20 - 25 cases, we go to > St. Louis Childrens and they said they only have around 5 cases. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 > > HI! > i'm new here (please excuse my english i'm french ) > i suffer from syndrom more or less since i was born. I am 22 > years old today. > I Grew out well but syndrom is still here ! i have to say that > the crises are very less frequent. i've had fever like 3 or 4 times > this year, lasting a couple of days. what's more, the crisis are less > important (less fever, less throat aches...)My doctor gives me > prednisone. Apparently symptoms tend to fade while you grow up. If > anyone here knows adults with i'd be glad to talk to them cause > i always hear about children but never how they grow up ! > One of my daughters suffers from symptoms since about age 19. Episodes came every 5-6 weeks in the first years, now (she's 29) about every 8-12 weeks. The attacks can be suppressed by prednisone. My daughter did show symptoms already in childhood, from about 1-4 years, when a tonsillectomy stopped it. Most doctors say that does not exist in adults, except M. Ewards, MD, Professor of pediatrics at vanderbilt. She has seen in adults and says a colleague of her in Washington did so, too. Best wishes for you Juergen Quote Link to comment Share on other sites More sharing options...
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