Guest guest Posted December 26, 2004 Report Share Posted December 26, 2004 Hi , I'm so sorry that your little guy was sick on Christmas. When I read your son's symptoms, it sounded just like I wrote it. Shane, who is 6 had all of the genetic testing done. HIDS, TRAPS, cyclic neutropenia, and FMF. Everything came back normal. But, our son is seeing a doctor Standford and he said that there can be rare strains of each of the diseases. Genedx (where the testing was done) just test for the more common strains. So. . . .. I also think that Shane might have TRAPS. The only difference between your son and mine is that Shane just recently started developing rashes. As he is growing old, his symptom are slowly changing. Shane gets a yucky sore throat, but does not get the sores in his mouth. Have you ever tried Prednisone? How long is he sick for, once the fever begins? Does he get vomit everytime? I hope your son is feeling better soon. Beverly Dettis Mom to Nick (10), Shane (7) and Maddy (5) At a standstill > > > Hi everyone, > > I've just recently come to this group, and I really appreciate all that > I'm learning about periodic fevers. I just need to unload some frustration > over my son's illness. He is still undiagnosed - they think possible > , possible TRAPS, maybe HyperIgD . . . we see the rheumatologist > every three months, and I feel like he forgets what's going on and just > gives me the same possibilities each time. Sometimes I feel like I have to > remind him of what tests have already been done. It's very frustrating, > when you've already been through several years of " it's just a virus " > diagnoses. > > Anyway, here is a list of my son's symptoms: > (pre-fever) > eyes get funny looking, kind of puffy > complains of feeling sick to his stomach > sometimes throws up > legs/shoulders hurt, says he can't walk > no appetite > is very whiney and easily upset > > fever > gets as high as 103 > throat hurts > sometimes mouth sores > eyes burn, light sensitivity > headache > vomiting > no appetite > > post-fever > slowly returning appetite > weakness > sleeps in very very late > > > His fevers and most other symptoms disappear during the fever phase when I > give him Motrin or suppositories like Fever-All, but then four hours > later, it's back to sickness. > > From what I've been reading, he seems more in line with TRAPS. The doctor > said that he would check for that in another three months, MAYBE. Is it > true that the treatment for TRAPS is an injected medicine twice a week? > The doc said that he wouldn't want his child to have to go through that, > so we'd just keep trying cimetidine (which has given us mixed results). > > A few months ago, my son had bronchitis and was given zithromax. His next > two episodes were very unremarkable - no lasting fever, no throwing up, > etc. I had mentioned this, and our doctor said " oh, that's interesting. We > should do a study on that sometime. " How about now?!?! > > My son asked if he would be sick on Christmas Day. He was due to get sick > the Sunday before, so I told my son he probably would be feeling fine. He > fought the episode all week, and I thought his general malaise was just > going to be it, but bam! He woke up hot and weak on Christmas Day. My poor > little guy. > > Thanks for listening. Sorry to sound so upset and to go on and on. > > > mom of Gabe, age 5 > > ________________________________________________________________ > Juno Gift Certificates > Give the gift of Internet access this holiday season. > http://www.juno.com/give > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hi Beverly! Thanks for the sympathy. I'm sorry I sounded like a whiner. I just feel so bad for my little boy. Today he's feeling fine - acting like he was never sick, which is typical. He usually gets sick every 21-26 days; his fever lasts for about 2 days. Yesterday it was 103.2. His fevers are so strange, because his whole body is never hot, just parts of it - such as his back and neck. It's so weird. The other symptom I had forgotten to list is that he gets a little stuffy in the nose. He does vomit every time. In fact, he throws up regularly so we usually can't give him motrin because he throws it right up. However, the Fever-All suppositories just don't work as well as motrin, so we keep trying to help him keep it down, which is no easy feat. I had asked the doctor about prednisone, and he said Gabe wasn't severe enough for that - that mostly kids who get convulsions from their fevers are given prednisone. From what I've read in this group, that might not necessarily always be true. Your son's rash - what is it like? Where does he get it? You said this was a recent symptom; how else has the disease changed for your son? I know you had recently been to a dermatologist - have they decided now that the rash is not from prednisone but is a new symptom? I hope it isn't too uncomfortable for your little guy. Take care, Message: 2 Date: Sun, 26 Dec 2004 18:07:37 -0800 From: " Beverly Dettis " <bdettis@...> Subject: Re: At a standstill Hi , I'm so sorry that your little guy was sick on Christmas. When I read your son's symptoms, it sounded just like I wrote it. Shane, who is 6 had all of the genetic testing done. HIDS, TRAPS, cyclic neutropenia, and FMF. Everything came back normal. But, our son is seeing a doctor Standford and he said that there can be rare strains of each of the diseases. Genedx (where the testing was done) just test for the more common strains. So. . . .. I also think that Shane might have TRAPS. The only difference between your son and mine is that Shane just recently started developing rashes. As he is growing old, his symptom are slowly changing. Shane gets a yucky sore throat, but does not get the sores in his mouth. Have you ever tried Prednisone? How long is he sick for, once the fever begins? Does he get vomit everytime? I hope your son is feeling better soon. Beverly Dettis Mom to Nick (10), Shane (7) and Maddy (5) ________________________________________________________________ Juno Gift Certificates Give the gift of Internet access this holiday season. http://www.juno.com/give Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hi , The rash started in April of this year. He normally gets it a few days to a week after his episode. However, about 3 weeks ago he got the rash out of the blue. No fever. We took him to the dermatologist and she said that his rash was a histamine rash. Nothing to worry about (sure like I can do that) and to bring him in when it is a lot more pronounced. They want to do a biopsy on him and we were told not to give him any prednisone as that can mess up the results. Without the prednisone Shane will be sick for a week. I am not looking forward to this. According to Shane's primary care doc and the dermatologist, this rash is not caused by the prednisone. It looks like hives. When it shows up it usually is on his knees, legs and his trunk. I have seen it on his face and also his bottom. It's itchy and when it is bad, the welts are up above the surface of the skin. When the rash is not bad, it is light red in color and is not raised above the skin. I usually give him Zurtec or Benedryl and it clears up right away. In my gut, I feel he doesn't have . Last night I did a lot of reading about periodic fevers. With a child doesn't get any illness between the episodes. Shane gets sick periodically with a cold, etc. between his episodes. Also, the fevers do not come on like clockwork. They used to more when he was younger, but they don't anymore. I read alot about TRAPS. I really hope he doesn't have that. I'm also thinking he might have JRA. According to the rheumatologiest we saw at Stanford, juvenile rheumatoid arthritis is very hard to diagnose and it can rear it's ugly head slowly over time. Shane periodically complains that his eyes hurt during his fever episodes. He is very photophobic and we have to turn all the lights off in the room. He saw a ophthalmologist last July when he was healthy, and he said that Shane's eyes did not look like a typical 7 year old's eyes. I'm not sure what that meant. But I asked for the medical records and will be forwarding that information to the doctor in Stanford. We are on a waiting list to see Dr. Kastner at the NIH group in land in 2005. I hope that he will be able to provide some answers for us. I think we are in it for the long haul and I pray that one day we will have a CONFIRMED diagnosis for Shane. Shane also gets really bad headaches during his fever episodes and his feet and hands are ice cold while the rest of his body is super hot. So strange. I also wanted to say that when Shane is in between his fever episodes, he complains that his legs hurt, arms, etc. When I hug him he often cries out in pain. I feel so bad and explain to him that I didn't mean to. Does your son's body ever hurt or is his body more sensitive between the fever episodes? Take care, Beverly Mom to Nick (10), Shane 7) and Madalyn (5) Re: At a standstill > > Hi , > > I'm so sorry that your little guy was sick on Christmas. When I read your > son's symptoms, it sounded just like I wrote it. Shane, who is 6 had all > of > the genetic testing done. HIDS, TRAPS, cyclic neutropenia, and FMF. > Everything came back normal. But, our son is seeing a doctor Standford > and > he said that there can be rare strains of each of the diseases. Genedx > (where the testing was done) just test for the more common strains. So. . > . > . I also think that Shane might have TRAPS. The only difference between > your son and mine is that Shane just recently started developing rashes. > As > he is growing old, his symptom are slowly changing. Shane gets a yucky > sore > throat, but does not get the sores in his mouth. > > Have you ever tried Prednisone? How long is he sick for, once the fever > begins? Does he get vomit everytime? > > I hope your son is feeling better soon. > > Beverly Dettis > Mom to Nick (10), Shane (7) and Maddy (5) > > > ________________________________________________________________ > Juno Gift Certificates > Give the gift of Internet access this holiday season. > http://www.juno.com/give > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Beverly, We are at a standstill. We know our son does not have and actually no doctor has ever suggested it, but I found Fran and stay here because so many moms go thru the fevers here and when Mathieu does have them it is nice to have a support group. We have been imbetween a diagnosis of Crohn's for a long time and now with a rash that came in late October; systemic JRA may be a possibility. Doctors thought the same thing...Possible allergic hive looking, but also said they hadn't seen it before....I TOOK PICTURES..LOL that way we can review them later if it comes back. The main thing most people will recommend on any listserv is keep a diary. Anything he may say hurts, fever, rash, or anything strange. A doctor may get a btter assessment of what diagnosis it could be based on what symptom precedes what. I have kept anything that may be of importance as well. His symptoms are enlarged spleen, enlarged liver, non-cyclic fevers (chronic low-grade mostly no high ones in months) rash, excessive far-sightedness and more so on his right eye (anisometropia). Inspite of growth on his own curve that is well below the 3% he has fallen off that too. So, we are not sure what this could be either, and they already ruled out all the fever disorders that could be tested. Mathieu also has had cold feet and hands even though the rest of his body is hot from a fever. I don't know what to think of it but I haven't read that it is a symptom to a diagnosis either. I am not as worried now as I used to be...I mean I worry a little about this mental development because he was FTT at 5 months old inspite of a ravenous appetite. Although he is slow to speak, he has proven me that he is intelligent. It can take until Mathieu is in grade school to determine if there is development delay or learning problems from his issues as a baby.....as of now I am blessed to say I don't believe so. I hate that he screams unconsolably most days and there is nothing we can figure out yet, but it will in time and hopefully we can take away the pain or whatever it is that he is dealing with. As far as the aches and pains....The importance is to make sure docs know he complains of achiness without fever too in the joints, muscles, where??? Children that fever tend to complain of headaches and achiness all over, but if he is complaining imbetween; this is an indicator that something else is going on like you said. When Mathieu has his fevers he really never complains of pain, but he doesn't speak quite yet, so we kinda depend on the crying as an indicator. I usually don't give him any tylenol or motrin unless he is in pain or obviously not feeling well whether from a fever or just generalized pain....it really depends on his tolerance for that day. I am hoping you will have a speedy diagnosis, but JRA along with most can be very difficult to diagnose...We have been working on Mathieu for 19 months now. Don't worry to much about it, as hard as that is..I did for so long I actually became super depressed and it was a bad time for his to show problems as I was BF and the docs immediately beat that to death. I was post-partum depressed and blamed myself even though I knew it wasn't my fault. I finally made it out of that and I relaize he sense the stress. You are the one who needs to be strong and a good advocate for him...Hard to do, but as I learn more, the more I realize my son does not have a lifethreatening illness and he can be treated. Take care and keep us posted... Jay Mom to: 5 3/4 Mathieu (turns 2 on the 3rd of January!!!!) 23# 30 " Shane also gets really bad headaches during his fever episodes and his feet and hands are ice cold while the rest of his body is super hot. So strange. I also wanted to say that when Shane is in between his fever episodes, he complains that his legs hurt, arms, etc. When I hug him he often cries out in pain. I feel so bad and explain to him that I didn't mean to. Does your son's body ever hurt or is his body more sensitive between the fever episodes? Take care, Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hi Jay, Thanks for replying. Just froming reading about JRA, specifically systemic JRA, it sounds like that may be what Mathieu has. The rash, low grade fever and eye problems. What I read about last night about TRAPS (Tumor Necrosis Factor Reactor - can be found in files) is that it can effect organs. When you mentioned the spleen and enlarged liver, I was wondering if that would also fit in as a possibility. We have taken pictures of Shane's rash and have emailed them to his doctors and have showned them in person when we have visited. I think it may be time for Shane to have a CT scan done to see how his internal organs are doing. Makes me wonder what Shane's insides look like. When he was 2 he was hospitalized for a week and had all kinds of tests done. The only thing they found was a " benign growth on his spleen " . They said nothing to worry about - hopefully they are right!! Also, I signed up last night through for the JRA group. It has been very imformative. Thought you may be interested in joining as well. Also, I was wondering what FTT was. And what I have noticed as Shane has gotten older was that he is now able to communicate what he is going through. When you described what Mathieu was doing, it brought me back when Shane was little. I remember all the guessing. Well. . .I guess that I'm still guessing with what he might have, but at least he can describe it to the best of his ability. Also, when did you notice when Mathieu was getting sick. Was he under a year old? What were his first symptoms? Shane was around 3 months old, had high fevers every 4 weeks like clockwork, and cried a lot. He also would have severe reactions when he was bitten by a misquito bite. The bite would blow up like a balloon. Take care, Beverly Mom to Nick (10), Shane (7) and Madalyn (5) RE: Re: At a standstill > > Beverly, > > We are at a standstill. We know our son does not have and actually > no > doctor has ever suggested it, but I found Fran and stay here because so > many > moms go thru the fevers here and when Mathieu does have them it is nice to > have a support group. We have been imbetween a diagnosis of Crohn's for a > long time and now with a rash that came in late October; systemic JRA may > be > a possibility. Doctors thought the same thing...Possible allergic hive > looking, but also said they hadn't seen it before....I TOOK PICTURES..LOL > that way we can review them later if it comes back. > > The main thing most people will recommend on any listserv is keep a diary. > Anything he may say hurts, fever, rash, or anything strange. A doctor may > get a btter assessment of what diagnosis it could be based on what symptom > precedes what. I have kept anything that may be of importance as well. > His symptoms are enlarged spleen, enlarged liver, non-cyclic fevers > (chronic > low-grade mostly no high ones in months) rash, excessive far-sightedness > and > more so on his right eye (anisometropia). Inspite of growth on his own > curve that is well below the 3% he has fallen off that too. So, we are > not > sure what this could be either, and they already ruled out all the fever > disorders that could be tested. Mathieu also has had cold feet and hands > even though the rest of his body is hot from a fever. I don't know what > to > think of it but I haven't read that it is a symptom to a diagnosis either. > > I am not as worried now as I used to be...I mean I worry a little about > this > mental development because he was FTT at 5 months old inspite of a > ravenous > appetite. Although he is slow to speak, he has proven me that he is > intelligent. It can take until Mathieu is in grade school to determine if > there is development delay or learning problems from his issues as a > baby.....as of now I am blessed to say I don't believe so. I hate that he > screams unconsolably most days and there is nothing we can figure out yet, > but it will in time and hopefully we can take away the pain or whatever it > is that he is dealing with. > > As far as the aches and pains....The importance is to make sure docs know > he > complains of achiness without fever too in the joints, muscles, where??? > Children that fever tend to complain of headaches and achiness all over, > but > if he is complaining imbetween; this is an indicator that something else > is > going on like you said. When Mathieu has his fevers he really never > complains of pain, but he doesn't speak quite yet, so we kinda depend on > the > crying as an indicator. I usually don't give him any tylenol or motrin > unless he is in pain or obviously not feeling well whether from a fever or > just generalized pain....it really depends on his tolerance for that day. > > I am hoping you will have a speedy diagnosis, but JRA along with most can > be > very difficult to diagnose...We have been working on Mathieu for 19 months > now. Don't worry to much about it, as hard as that is..I did for so long > I > actually became super depressed and it was a bad time for his to show > problems as I was BF and the docs immediately beat that to death. I was > post-partum depressed and blamed myself even though I knew it wasn't my > fault. I finally made it out of that and I relaize he sense the stress. > You are the one who needs to be strong and a good advocate for him...Hard > to > do, but as I learn more, the more I realize my son does not have a > lifethreatening illness and he can be treated. > > Take care and keep us posted... > > Jay > > Mom to: > > 5 3/4 > Mathieu (turns 2 on the 3rd of January!!!!) 23# 30 " > > > > > Shane also gets really bad headaches during his fever episodes and his > feet > and hands are ice cold while the rest of his body is super hot. So > strange. > I also wanted to say that when Shane is in between his fever episodes, he > complains that his legs hurt, arms, etc. When I hug him he often cries > out > in pain. I feel so bad and explain to him that I didn't mean to. Does > your > son's body ever hurt or is his body more sensitive between the fever > episodes? > > Take care, > > Beverly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Q. Also, when did you notice when Mathieu was getting sick. What were his first symptoms? A. I noticed when he actually fell of the charts. He did have one seriuolsy high fever as an infant but it was nothing probably a virus. I never took is temps as often as I do now, so he may have had low-grades all along and I never knew. He didn't start the high temps until just before his first year (December 03). Prior to the fevers he would act listless (almost like he would crash form low blood sugar) I would nurse him and he would improve buthe was clammy and cool like a crash form blood sugar. I recall his urine always smelling funny, and dark. He has a a few near UTI's but not needed antibiotics. We were told to keep him on Electrolyte drinks to help this. Alot of his first symptoms was just the crying as if in pain. We put him on Reglan and Zantac for a short time due to SIlent reflux, but even the doc felt that couldn't be the only thing going on. He was FTT Failure to Thrive, and has alot of mucousy stools ( I related to BF) but after seeing his drop in growth the docs thought perhaps it was a intestinal infection. After several stool studies they rules that ot and thought of Crohn's. The colonscopy showed nothing significant but all his bloodwork leaned to trhe diagnosis of Crohn's. He was sick alot, but I think it becomes cyclic. If an immune system is shot they are more likely to get sick, and then the immune system is shot and then they get sick..etc. He was ill from fever and virus for months last December 2003 thru May of this year which also accumulated to his slow growth. Now the fevers have never stopped and the diarrhea comes and goes. Soem days are worse than others. They have thought of Celias and Milk allergies or intolerances. We do not give him milk or any of the sort, but that would not severely retard his growth a sit has. He used to be at the 50% line until he fell before 6 months. The only reaosn this is in quesiotn is becasue of the manner in which he dropped off the charts. It is not alarming usually, some children drop....H efell more than 3 deviations off his curve, so that is why they follow it. I have never seen any serious reactions to anything with him except dairy in which I stopped drinking and eatijng any of it so I could continue nursing. As matter of fact his skin takes quite a beating with his serious diarrhea he has. They are doing a bone age ANA (rule out Lupus because he has really funky dry scaly cheeks resembling Lupus or just eczema), RA Factor, and growth hormone stuff to make sure that is normal... All of these except the RA factor and the ANA have been done before. They are kind of routine just to make sure his body uis using his hormones. Good luck!!!! Keep us posted. Jay Shane was around 3 months old, had high fevers every 4 weeks like clockwork, and cried a lot. He also would have severe reactions when he was bitten by a misquito bite. The bite would blow up like a balloon. Take care, Beverly Mom to Nick (10), Shane (7) and Madalyn (5) RE: Re: At a standstill > > Beverly, > > We are at a standstill. We know our son does not have and actually > no > doctor has ever suggested it, but I found Fran and stay here because so > many > moms go thru the fevers here and when Mathieu does have them it is nice to > have a support group. We have been imbetween a diagnosis of Crohn's for a > long time and now with a rash that came in late October; systemic JRA may > be > a possibility. Doctors thought the same thing...Possible allergic hive > looking, but also said they hadn't seen it before....I TOOK PICTURES..LOL > that way we can review them later if it comes back. > > The main thing most people will recommend on any listserv is keep a diary. > Anything he may say hurts, fever, rash, or anything strange. A doctor may > get a btter assessment of what diagnosis it could be based on what symptom > precedes what. I have kept anything that may be of importance as well. > His symptoms are enlarged spleen, enlarged liver, non-cyclic fevers > (chronic > low-grade mostly no high ones in months) rash, excessive far-sightedness > and > more so on his right eye (anisometropia). Inspite of growth on his own > curve that is well below the 3% he has fallen off that too. So, we are > not > sure what this could be either, and they already ruled out all the fever > disorders that could be tested. Mathieu also has had cold feet and hands > even though the rest of his body is hot from a fever. I don't know what > to > think of it but I haven't read that it is a symptom to a diagnosis either. > > I am not as worried now as I used to be...I mean I worry a little about > this > mental development because he was FTT at 5 months old inspite of a > ravenous > appetite. Although he is slow to speak, he has proven me that he is > intelligent. It can take until Mathieu is in grade school to determine if > there is development delay or learning problems from his issues as a > baby.....as of now I am blessed to say I don't believe so. I hate that he > screams unconsolably most days and there is nothing we can figure out yet, > but it will in time and hopefully we can take away the pain or whatever it > is that he is dealing with. > > As far as the aches and pains....The importance is to make sure docs know > he > complains of achiness without fever too in the joints, muscles, where??? > Children that fever tend to complain of headaches and achiness all over, > but > if he is complaining imbetween; this is an indicator that something else > is > going on like you said. When Mathieu has his fevers he really never > complains of pain, but he doesn't speak quite yet, so we kinda depend on > the > crying as an indicator. I usually don't give him any tylenol or motrin > unless he is in pain or obviously not feeling well whether from a fever or > just generalized pain....it really depends on his tolerance for that day. > > I am hoping you will have a speedy diagnosis, but JRA along with most can > be > very difficult to diagnose...We have been working on Mathieu for 19 months > now. Don't worry to much about it, as hard as that is..I did for so long > I > actually became super depressed and it was a bad time for his to show > problems as I was BF and the docs immediately beat that to death. I was > post-partum depressed and blamed myself even though I knew it wasn't my > fault. I finally made it out of that and I relaize he sense the stress. > You are the one who needs to be strong and a good advocate for him...Hard > to > do, but as I learn more, the more I realize my son does not have a > lifethreatening illness and he can be treated. > > Take care and keep us posted... > > Jay > > Mom to: > > 5 3/4 > Mathieu (turns 2 on the 3rd of January!!!!) 23# 30 " > > > > > Shane also gets really bad headaches during his fever episodes and his > feet > and hands are ice cold while the rest of his body is super hot. So > strange. > I also wanted to say that when Shane is in between his fever episodes, he > complains that his legs hurt, arms, etc. When I hug him he often cries > out > in pain. I feel so bad and explain to him that I didn't mean to. Does > your > son's body ever hurt or is his body more sensitive between the fever > episodes? > > Take care, > > Beverly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hi , Sorry to hear Gabe was sick over Christmas. My daughter was also unwell. We looked at the Christmas lights in our community one night with her sunglasses on.( her eyes were bloodshot and sore; also had light sensitivity) ’s symptoms as well have changed over the years. Sadly we have yet to have a well Christmas in all of her five years, but we had a nice day anyway. drank ginger-ale and gater-aide and gratefully we were all in good humor. Not much else you can do. Last year on Christmas eve woke blazing red with fever and told me to call Santa and cancel Christmas, this year was better.(She had two fever episodes this month) I am currently pushing for the TRAPS testing to be done. was only diagnoses with in July and has been fevering since about six months old. Our ped is leaning towards HIDS if not ? just finished her three-month adventure with Cimetidine, it did not noticeably change her fevers, but her rashes became very pronounced and her joint pain was more chronic daily instead of just with the fever episode. also was much more weepy and anxious. Since being off the cimetidine a few weeks her mood has improved and her daily pain has lessened, her rash still appeared with the Christmas cycle, but it went away quickly and the rash itself was different than the previous three months. (unsure if connection) Our Pediatrician has yet to decide if he is putting back on it. My vote is no thanks. It was miserable watching in pain all month. on occasion has had a croupy/bronchitis like cough with her episodes usually in the winter, but it goes away untreated when the fever goes away. I’ve read in the archives that she is not unique in this regard. Interesting what these kids weather and come through smiling. Hope your questions are answered and peace of mind and heart are abundant in the new-year. Walton (5) ? Nanaimo BC Can At a standstill Hi everyone, I've just recently come to this group, and I really appreciate all that I'm learning about periodic fevers. I just need to unload some frustration over my son's illness. He is still undiagnosed - they think possible , possible TRAPS, maybe HyperIgD . . . we see the rheumatologist every three months, and I feel like he forgets what's going on and just gives me the same possibilities each time. Sometimes I feel like I have to remind him of what tests have already been done. It's very frustrating, when you've already been through several years of " it's just a virus " diagnoses. Anyway, here is a list of my son's symptoms: (pre-fever) eyes get funny looking, kind of puffy complains of feeling sick to his stomach sometimes throws up legs/shoulders hurt, says he can't walk no appetite is very whiney and easily upset fever gets as high as 103 throat hurts sometimes mouth sores eyes burn, light sensitivity headache vomiting no appetite post-fever slowly returning appetite weakness sleeps in very very late His fevers and most other symptoms disappear during the fever phase when I give him Motrin or suppositories like Fever-All, but then four hours later, it's back to sickness. From what I've been reading, he seems more in line with TRAPS. The doctor said that he would check for that in another three months, MAYBE. Is it true that the treatment for TRAPS is an injected medicine twice a week? The doc said that he wouldn't want his child to have to go through that, so we'd just keep trying cimetidine (which has given us mixed results). A few months ago, my son had bronchitis and was given zithromax. His next two episodes were very unremarkable - no lasting fever, no throwing up, etc. I had mentioned this, and our doctor said " oh, that's interesting. We should do a study on that sometime. " How about now?!?! My son asked if he would be sick on Christmas Day. He was due to get sick the Sunday before, so I told my son he probably would be feeling fine. He fought the episode all week, and I thought his general malaise was just going to be it, but bam! He woke up hot and weak on Christmas Day. My poor little guy. Thanks for listening. Sorry to sound so upset and to go on and on. mom of Gabe, age 5 ________________________________________________________________ Juno Gift Certificates Give the gift of Internet access this holiday season. http://www.juno.com/give Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 I would personally do an apple day - that's my vote! ---- fiddlesticksfl <fiddlesticksfl@...> wrote: > I'm on day 11 of vlcd and am thrilled to have lost 14 lbs so far, but I have been at a standstill for the past 4 days. I'm wondering if I should do an apple day or just go with the plateau and wait for it to pass. Any suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 i would do an apple day also!! > I'm on day 11 of vlcd and am thrilled to have lost 14 lbs so far, but I have been at a standstill for the past 4 days. I'm wondering if I should do an apple day or just go with the plateau and wait for it to pass. Any suggestions?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 apple day--lost 2 yesterday doing it > I'm on day 11 of vlcd and am thrilled to have lost 14 lbs so far, but I have been at a standstill for the past 4 days. I'm wondering if I should do an apple day or just go with the plateau and wait for it to pass. Any suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Good for you, next time that's what I'll do. I ended up following the protocol for vlcd and awoke this morning down a full pound.. But will do the apple trick for the next plateau. Thanks. > I'm on day 11 of vlcd and am thrilled to have lost 14 lbs so far, but I have been at a standstill for the past 4 days. I'm wondering if I should do an apple day or just go with the plateau and wait for it to pass. Any suggestions?> Quote Link to comment Share on other sites More sharing options...
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