Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 My 3 year old daughter also always complains of leg pain, saying it hurts to walk. I am unaware if this is due to the fever syndrome or just that her fever is so high she is weak. Keira 3 possible , Brady 4, and Chloe 7 Ohio --------------------------------- Sponsored Link Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 My son Chance has always had the leg pain. He is 11 now and does better with it, I think he has just learned how to cope. Seemed like we used a stroller forever with him due to this. Cadin 13, Chance 11, Keleah 9 > > My 3 year old daughter also always complains of leg pain, saying it hurts to walk. I am unaware if this is due to the fever syndrome or just that her fever is so high she is weak. > > Keira 3 possible , Brady 4, and Chloe 7 > Ohio > > > --------------------------------- > Sponsored Link > > Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Nikole has leg pain a lot also. Since Halloween she's been hurting quite a lot. Do any of you have recomendations on what to do to remedy it? I hate to give her ibuprofen all the time since she takes so much of it when she's fevering. I don't want to tear her stomach up. Thanks Tonya mother to Nikole 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Thank you so much for the input, I am going to call the Dr. and see what he thinks. Thanks again.... > > My 3 year old daughter also always complains of leg pain, saying it hurts to walk. I am unaware if this is due to the fever syndrome or just that her fever is so high she is weak. > > Keira 3 possible , Brady 4, and Chloe 7 > Ohio > > > --------------------------------- > Sponsored Link > > Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Thanks, it's good to know that Krystina isn't alone!!!! > > > > My 3 year old daughter also always complains of leg pain, saying it hurts to walk. I am > unaware if this is due to the fever syndrome or just that her fever is so high she is weak. > > > > Keira 3 possible , Brady 4, and Chloe 7 > > Ohio > > > > > > --------------------------------- > > Sponsored Link > > > > Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi, Breana gets leg pains frequently at night(rest) her docs have called it muscle myalgia(SP?) It's like they are locked in spasm. We have learned thru the years what we need to limit in walking and when we can we do. She does have a Convoid umbrella wheelchair that we use for long walking events but we try to not use it unless we have to. Breana's legs bother her whenever, there is no association to her fevers. it comes and goes! mom to Breana 6 on Sunday!!!! Re: Pain in legs My 3 year old daughter also always complains of leg pain, saying it hurts to walk. I am unaware if this is due to the fever syndrome or just that her fever is so high she is weak. Keira 3 possible , Brady 4, and Chloe 7 Ohio --------------------------------- Sponsored Link Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Our 8 year old too complains of leg pain. In fact tonight, out of the blue, started crying saying his leg hurt so bad. And you know, it almost seems like it makes him want to crawl out of his skin, so must be very uncomfortable. I feel like I am constantly giving Motrin, but we have tried massage, showers, warm baths and just can't find anything else that helps. He is 2 weeks post episode, so for him too, the leg pain just comes whenever. Always though the night before an episode starts. That is always our key indicator. Patti mother of Brady 8 Amy <raleary@...> wrote: Hello, My daughter who is 2 1/2 was diagnosed or suspected of having . I noticed this week with one of her episodes that she says her legs hurt or she wants me to carry her. Does anyone else ever run into symptoms like this?? Oh and this was the second time I have given her the prendisone, she started fevering on Halloween so I gave her Motrin and Prendisone, the fever went away, just like that. I was shocked. Well, it came back on Saturday and I didn't know what to do, I didn't give her more prendisone as I thought that might be over kill and she is still having fevers. Any Advice?? THANK YOU, Amy Leary --------------------------------- Sponsored Link $200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home equity - Click now for info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 I am new to this group. I have a day care child who was just diagnosed with . She has been having symptoms for about ten months and they finally figured out that the problem is this syndrome. I joined the group so I can find out more about it and be more able to help the parents take care of her when she has an episode of fever. She is two and a half. I am writing here to say that she has had leg pain at some points with this. The last episode really gave her quite a bit of leg pain. She was barely able to stand from a sitting position while sitting on the floor. I wondered if it was a common symptom with the fever. The leg pain seemed to be the worst at the onset of the fever. Thanks for your help with this group Joanne Patti Preston wrote: > Our 8 year old too complains of leg pain. In fact tonight, out of the > blue, started crying saying his leg hurt so bad. And you know, it > almost seems like it makes him want to crawl out of his skin, so must > be very uncomfortable. I feel like I am constantly giving Motrin, but > we have tried massage, showers, warm baths and just can't find > anything else that helps. He is 2 weeks post episode, so for him too, > the leg pain just comes whenever. Always though the night before an > episode starts. That is always our key indicator. > > Patti mother of Brady 8 > > Amy <raleary@... <mailto:raleary%40charter.net>> wrote: > Hello, > My daughter who is 2 1/2 was diagnosed or suspected of having . > I noticed this week with one of her episodes that she says her legs > hurt or she wants me to carry her. Does anyone else ever run into > symptoms like this?? Oh and this was the second time I have given her > the prendisone, she started fevering on Halloween so I gave her Motrin > and Prendisone, the fever went away, just like that. I was shocked. > Well, it came back on Saturday and I didn't know what to do, I didn't > give her more prendisone as I thought that might be over kill and she > is still having fevers. Any Advice?? > > THANK YOU, > Amy Leary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 My six year old son Mason also gets pain in his legs. At this point they are thinking he has HIDS. Sometimes the pain gets severe for him and he'll actually limp. I asked him what it feels like when they hurt and this is how he described it ... " it feels like my bones are breaking and they keep hitting each other inside my skin ... like they are just going to pop out if I walk too fast " . In times when the pain is too bad, he has a lot of difficulty with walking and forget running, as that has already made him cry. We had found out had bad the pain was earlier this year when I picked him up from his babysitter and he was crying. He said " Mommy, all the kids run and like playing chase ... but I just can't run, it hurts too bad ... " I felt soooo bad. His babysitter felt really bad too. Heidi Mommy of Mason Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 It is so weird that this is a major topic today because last night I had to give my son, , Tylenol for his leg pain. He is 7 and says it feels like someone is hitting him with a hammer. He also told us that he ran 4 laps in Gym yesterday and that whenever he has gym his legs hurt more. did not walk until he was 18 months old and he is not a very active child. We have had him evaluated and tested throughout the years but they never find anything wrong. I have been told that it is just his personality which I believed for a long time but the older he gets and the more he can tell us what is happening with him the more I believe that it is all related to his fevers. Fortunately, has not fevered since May! He still seems to have other symptoms at times but not as severe. He does seem to be having low grade fevers (usually around 100.4) regularly but not to where I can track/predict them. I am hoping he is outgrowing this! Best wishes to all! mom to (7, ?), Luke (4, healthy and active), and #3 on the way! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 What is HIDS? Joanne americangirl_usa1 wrote: > My six year old son Mason also gets pain in his legs. At this point > they are thinking he has HIDS. Sometimes the pain gets severe for him > and he'll actually limp. > > I asked him what it feels like when they hurt and this is how he > described it ... " it feels like my bones are breaking and they keep > hitting each other inside my skin ... like they are just going to pop > out if I walk too fast " . In times when the pain is too bad, he has a > lot of difficulty with walking and forget running, as that has already > made him cry. We had found out had bad the pain was earlier this year > when I picked him up from his babysitter and he was crying. He > said " Mommy, all the kids run and like playing chase ... but I just > can't run, it hurts too bad ... " I felt soooo bad. His babysitter > felt really bad too. > > Heidi > Mommy of Mason > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hello Joanne, is one of the Periodic Fever Syndromes. It is not genetically linked as we know it. There are other PFSs. HIDs, TRAPs, FMF, NOMID, Muckle Wells are some. Visit our file and link section there is an enormous amount of information.... These PFSs are genetic in nature... The symptoms are similar.... in all of the disorders. There are also some people labeled as Periodic Fever Disorder of Unknown Etiology... which makes it more confusing and difficult to diagnose. There are genetic markers for these disorders however not all are known... current research is being done at the NIH.gov Also in the Netherlands, there is an enormous amount of research being done on HIDs.. Visit hids.net God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 > > My six year old son Mason also gets pain in his legs. At this point > they are thinking he has HIDS. Sometimes the pain gets severe for him > and he'll actually limp. > > I asked him what it feels like when they hurt and this is how he > described it ... " it feels like my bones are breaking and they keep > hitting each other inside my skin ... like they are just going to pop > out if I walk too fast " . In times when the pain is too bad, he has a > lot of difficulty with walking and forget running, as that has already > made him cry. We had found out had bad the pain was earlier this year > when I picked him up from his babysitter and he was crying. He > said " Mommy, all the kids run and like playing chase ... but I just > can't run, it hurts too bad ... " I felt soooo bad. His babysitter > felt really bad too. > > Heidi > Mommy of Mason > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 > > My six year old son Mason also gets pain in his legs. At this point > they are thinking he has HIDS. Sometimes the pain gets severe for him > and he'll actually limp. > > I asked him what it feels like when they hurt and this is how he > described it ... " it feels like my bones are breaking and they keep > hitting each other inside my skin ... like they are just going to pop > out if I walk too fast " . In times when the pain is too bad, he has a > lot of difficulty with walking and forget running, as that has already > made him cry. We had found out had bad the pain was earlier this year > when I picked him up from his babysitter and he was crying. He > said " Mommy, all the kids run and like playing chase ... but I just > can't run, it hurts too bad ... " I felt soooo bad. His babysitter > felt really bad too. > > Heidi > Mommy of Mason > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi Fran Thank you so much for this information. I will visit the file and link section. I am new to this disorder and want to learn as much as I can. Truthfully I am surprised that I had not come across this sooner with children. I am so glad that in the Netherlands they are doing more extensive research. It absolutely needs to be done. I will visit that hids site too. I really appreciate your help. The little girl I have with does have leg cramps with her fever. I also think she does hallucinate at times. The last episode her fever was 105.3 and she seemed to be hallucinating. Her language skills are just getting to the point of really being able to understand her well and she was talking about things that were not here. She usually points to her throat too and says it hurts. Is that part of the syndrome? Are there any statistics on the numbers or percentage of children that have this syndrome? Thank you again Joanne Fran Bulone wrote: > Hello Joanne, > > is one of the Periodic Fever Syndromes. > It is not genetically linked as we know it. > > There are other PFSs. > HIDs, TRAPs, FMF, NOMID, Muckle Wells are some. > Visit our file and link section there is an enormous amount of > information.... These PFSs are genetic in nature... > > The symptoms are similar.... in all of the disorders. > > There are also some people labeled as Periodic Fever Disorder of > Unknown Etiology... which makes it more confusing and difficult to > diagnose. > > There are genetic markers for these disorders however not all are > known... current research is being done at the NIH.gov > > Also in the Netherlands, there is an enormous amount of research being > done on HIDs.. Visit hids.net > > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr CIAS1 mutation 11/05 > Waxhaw NC > / > </> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Interesting ... we too had an x-ray show toxic synovitis this summer. He was in so much pain due to the synovitis ... and it too was during a fever cycle. I am so happy to have found this website. It really reminds me each day that I am NOT losing my mind and that other children are also experiencing similar symptoms. Thank you all for writing your emails and being here as a support group! It is so painful to leave the doctors office for one year with a sick child in one hand and tears running down your face because your motherly instinct tells you that it is " not just another virus! " I have a question about belly pains. has belly pains all of the time. His doctor (ped) had us schedule a lactose test for him next week to rule out lactose intolerance. During his fever episodes ... he often gets diarrhea and has thrown up a few times. The diarrhea and vomit are not " flu like " though ... it passes much quicker than the common flu. When he is not having a fever episode, he complains about his tummy after each meal. He says it " feels like he has to throw up " . It seems like his belly pain is somehow tied into his ?? We're so new to this and have not even had a formal diagnosis yet. We're waiting for him to get sick again so we can return to the rheumatologist for our next labs. I've had the lactose test and know how unpleasant it can be. I feel terrible taking him next week but I feel like we are still trying to cross things off. So ... if any of your children have belly pains could you please send me an email and let me know if this appears to be related to -- we're still in the early learning stage! Thank you so much! Micaela 4 (?) 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Hi Micaela It sounds like you are describing my child!! is 9 and from 14months we struggled with this problem. She would have chronic diarrhea after milk, then she would become constipated. She also felt sick in the stomach all the time. She refused to eat anyting at one stage as she said her tummy hurt. Her Ped. assured us it was just a virus and she had a Colonoscopy and an Gastropsopy (2 tests out of about 10)to check for underlying problems. There were none. These problems disappeared when she was 6 when we took her off milk and wheat(she is not a celiac) Try removing these foods and see how you go. has calcium supplements and soy milk instead. Be assured you are not loosing your mind and are not alone. I know how hard it is to be the only one who knows the Docs are wrong and there IS something wrong with my child. Stay stong as we are here for you Therese -- In , " MicaelaZ " <micaelaz@...> wrote: > > Interesting ... we too had an x-ray show toxic synovitis this > summer. He was in so much pain due to the synovitis ... and it too > was during a fever cycle. > > I am so happy to have found this website. It really reminds me each > day that I am NOT losing my mind and that other children are also > experiencing similar symptoms. Thank you all for writing your emails > and being here as a support group! It is so painful to leave the > doctors office for one year with a sick child in one hand and tears > running down your face because your motherly instinct tells you that > it is " not just another virus! " > > I have a question about belly pains. has belly pains all of > the time. His doctor (ped) had us schedule a lactose test for him > next week to rule out lactose intolerance. During his fever > episodes ... he often gets diarrhea and has thrown up a few times. > The diarrhea and vomit are not " flu like " though ... it passes much > quicker than the common flu. When he is not having a fever episode, > he complains about his tummy after each meal. He says it " feels like > he has to throw up " . > > It seems like his belly pain is somehow tied into his ?? We're > so new to this and have not even had a formal diagnosis yet. We're > waiting for him to get sick again so we can return to the > rheumatologist for our next labs. > > I've had the lactose test and know how unpleasant it can be. I feel > terrible taking him next week but I feel like we are still trying to > cross things off. So ... if any of your children have belly pains > could you please send me an email and let me know if this appears to > be related to -- we're still in the early learning stage! > > Thank you so much! > Micaela > 4 (?) > 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2010 Report Share Posted December 21, 2010 A couple of months ago I reported that I was having a problem with swelling in my legs and feet. After going to a cardiologist over the course of several weeks, I went through a number of tests, including a stress test with echo. The results revealed that there are no problems with my heart. The swelling has gone done quite a bit in the past month or so, but now I'm having a lot of pain in my legs - especially my left leg. I have been following your program strictly - both foods and supplements. I have changed from just taking halibut liver oil to taking some cod liver oil and some halibut liver oil. That's the only thing I've changed. At times the pain in my left leg is almost intolerable. Do you have any suggestions? I also reported a while back that my liver enzymes were high. They've come down a little since then but they're still too high - which has the doctor worried. I'm confident they'll come down to a normal level - I've been doing the coffee enemas. But I was wondering if this could be causing pain in my legs. Anyway, I would appreciate your thoughts/suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2010 Report Share Posted December 22, 2010 > > A couple of months ago I reported that I was having a problem with swelling in my legs and feet. After going to a cardiologist over the course of several weeks, I went through a number of tests, including a stress test with echo. The results revealed that there are no problems with my heart. The swelling has gone done quite a bit in the past month or so, but now I'm having a lot of pain in my legs - especially my left leg. I have been following your program strictly - both foods and supplements. I have changed from just taking halibut liver oil to taking some cod liver oil and some halibut liver oil. That's the only thing I've changed. At times the pain in my left leg is almost intolerable. Do you have any suggestions? I also reported a while back that my liver enzymes were high. They've come down a little since then but they're still too high - which has the doctor worried. I'm confident they'll come down to a normal level - I've been doing the coffee enemas. But I was wondering if this could be causing pain in my legs. Anyway, I would appreciate your thoughts/suggestions. > +++Hi , That's great you've had some improvements. I couldn't know what is happening to cause your severe leg pain, so please get that checked out by the doctor. Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2010 Report Share Posted December 22, 2010 Hi , I'm not contradicting what Bee said -- just wanted to give you my own recent experience. I've been having pain in my left foot that comes and goes. The first night I noticed it, it was so painful that I had trouble sleeping because of it. The next day I put diluted oregano oil on it, and the pain diminished to just a little tenderness. Since then, the pain has returned at times, but never as painful as at the beginning. It sounds like your pain continues unabated for the time being. You might try diluted oregano oil on it to see if it helps. Since mine comes and goes, I think it must be toxins. Your pain may not have the same cause. Whatever it is, I hope it gets better soon. H. > > > > A couple of months ago I reported that I was having a problem with swelling in my legs and feet. After going to a cardiologist over the course of several weeks, I went through a number of tests, including a stress test with echo. The results revealed that there are no problems with my heart. The swelling has gone done quite a bit in the past month or so, but now I'm having a lot of pain in my legs - especially my left leg. I have been following your program strictly - both foods and supplements. I have changed from just taking halibut liver oil to taking some cod liver oil and some halibut liver oil. That's the only thing I've changed. At times the pain in my left leg is almost intolerable. Do you have any suggestions? I also reported a while back that my liver enzymes were high. They've come down a little since then but they're still too high - which has the doctor worried. I'm confident they'll come down to a normal level - I've been doing the coffee enemas. But I was wondering if this could be causing pain in my legs. Anyway, I would appreciate your thoughts/suggestions. > > > +++Hi , > > That's great you've had some improvements. > > I couldn't know what is happening to cause your severe leg pain, so please get that checked out by the doctor. > > Bee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2010 Report Share Posted December 22, 2010 Hi . I don't know if it of any help but I have had pain in my legs and feet connected to my liver in the past. The fact that your liver enzymes are a bit elevated could well be linked somehow. I remember that about 10 days after I originally dumped the gluten and dairy foods three years ago I got a severe throbbing pain in my left foot. It would build up to a crescendo every thirty seconds or so then die away. At the same time I could feel stuff going down my hepatic tubes in my right side and when I felt around the area it was quite sore. It was pretty bad for several hours, and became tolerable when I went to bed and over the course of the next couple of days it gradually abated. I suspect that not being bombarded with the horrible crud any more gave my liver a chance to have a good old clear-out. Interestingly, when I got the pain in my foot, I went and checked the Reflexology chart on the internet and sure enough, the area where I was getting the pain under my foot, equated with the liver. All the nerve meridians are connected in the body and feeling a pain or ache in a certain place can often tell us that the issue is actually somewhere else. I also get terrible restless legs when I get 'glutened'. That was something I had to put up with all the time prior to dumping the gluten, but never realised that was the trigger. I would also get very hot burning feet too, but that has all gone now unless I inadvertently get glutened. Doesn't happen very often fortunately. I have become, over the last three years, very in tune with my body and what it is doing. I am far more aware of things happening now than I used to be. I have been on Bee's diet for 8 months, but am still going through some quite extreme detox and some healing processes. My digestion is proving to be the hardest thing to rectify, and until I can get that working properly the healing process will not work as well. I had a lot of damage to my gut from the gluten and dairy and it is taking quite some time to heal. I may also be having some issues with my pancreas too. But I have found that reactions both in my back, and my legs and feet are very much linked to my digestion and my liver. Ali. > > > > A couple of months ago I reported that I was having a problem with swelling in my legs and feet. After going to a cardiologist over the course of several weeks, I went through a number of tests, including a stress test with echo. The results revealed that there are no problems with my heart. The swelling has gone done quite a bit in the past month or so, but now I'm having a lot of pain in my legs - especially my left leg. I have been following your program strictly - both foods and supplements. I have changed from just taking halibut liver oil to taking some cod liver oil and some halibut liver oil. That's the only thing I've changed. At times the pain in my left leg is almost intolerable. Do you have any suggestions? I also reported a while back that my liver enzymes were high. They've come down a little since then but they're still too high - which has the doctor worried. I'm confident they'll come down to a normal level - I've been doing the coffee enemas. But I was wondering if this could be causing pain in my legs. Anyway, I would appreciate your thoughts/suggestions. > > > +++Hi , > > That's great you've had some improvements. > > I couldn't know what is happening to cause your severe leg pain, so please get that checked out by the doctor. > > Bee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2010 Report Share Posted December 23, 2010 Thank you, . Actually, the pain does come and go. It never goes away completely, but it does subside some and then flare up again. Anyway, I might try your suggestion about using diluted oregano oil. Thanks for sharing it. > > > > > > A couple of months ago I reported that I was having a problem with swelling in my legs and feet. After going to a cardiologist over the course of several weeks, I went through a number of tests, including a stress test with echo. The results revealed that there are no problems with my heart. The swelling has gone done quite a bit in the past month or so, but now I'm having a lot of pain in my legs - especially my left leg. I have been following your program strictly - both foods and supplements. I have changed from just taking halibut liver oil to taking some cod liver oil and some halibut liver oil. That's the only thing I've changed. At times the pain in my left leg is almost intolerable. Do you have any suggestions? I also reported a while back that my liver enzymes were high. They've come down a little since then but they're still too high - which has the doctor worried. I'm confident they'll come down to a normal level - I've been doing the coffee enemas. But I was wondering if this could be causing pain in my legs. Anyway, I would appreciate your thoughts/suggestions. > > > > > +++Hi , > > > > That's great you've had some improvements. > > > > I couldn't know what is happening to cause your severe leg pain, so please get that checked out by the doctor. > > > > Bee > > > Quote Link to comment Share on other sites More sharing options...
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