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Recurrent, scheduled fever, complains of leg pain
For >7 months my 3 year old son has had recurrent fevers.  At first, the fevers were about 3 weeks apart and lasted 2-3 days.  I started calendaring his fevers and they now occur every two weeks- like clockwork.  His fevers are occassionally accompnaied by leg pain and stomach pain.  During the few days before his fever he is extremely fatigued- tired enough that he falls asleep sitting up.  A CBC was done and indicated that he was anemic (his H&H was ~10 and ~30).  Two weeks later, his H&H was normal.  His doctor has ordered another CBC, Hepatic function, ANA, RA, Cocci, CRP, UA with C&S, Blood cultures, sed rate.  The results of these tests are not back yet.  Is there anything else that his doctor should be testing?  DO you have any idea what could be wrong with him?
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509877 tn?1315365294
Sorry to hear about your sons illness. And I completely understand the daycare situtation when there is a fever present. Our schools around here are the same way, They dont want the children back until they are fever free for at least 24 hours. But I was able to have my physician assist me with fighting this rule & winning for my child the right to be in school & or after care when he did have these fevers due to the origin being from his autoimmune disorder, he is not contagious to others. If I had kept him home every time he had the fevers & followed the rules, he would not have completed school. He just graduated this past May & he was able to take advanced level or honors level classes throughout his school years whenever offered. Also regarding the enlarged lymphnodes, I am not saying the diagnosis you have is wrong, but my son quite often has enlarged lymphnodes with no other symptom. His doctor says it is part of the disorder. I agree with you about not overmedicating the fevers if not needed, Jules could function normally with a fever of 100 to 104 so we only treated them if he complained. And we also had the asthma/croup diagnosis too. I wish you the best of luck with your child. Try talking to your doctor for assistance at least by school age you will probably have to do whats called a 504 under other health impairment regarding the frequent fevers or prepare to miss a lot of days which in my area will put the parents in front of a judge for truancy. Good luck!
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My son gets a fever of 104 a number of times a year, and we have never been able to bring it down without antibiotics, shots, and one time a week in the hospital with fever of unknown origin.  It seems that when the rest of the family has a cold, he has strep, ear infection, pneumonia, flu, or some other combination of serious infectious disease.  
We have been giving him one tablespoon of NOPOLEA every day for a few months now, and he has not had a fever.  He has even had a cold or cough WITHOUT A FEVER or a doctor visit!  Nopolea is a combination of concentrated juice from Nopal cactus, black cherries, and other fruits that decrease inflamation.  It is expensive, but you only use a little every day, and it is not nearly as expensive as the doctor visits and medicines.  
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Lyme tests produce notoriously false negatives. Additionally, there are other micro-organisms (associated with lyme) that can cause similar symptoms like babesia, bartonella (or bartonela like organisms),erlichia, mycoplasmas and viruses. You need to see a "lyme treating" physician who can treat co-infections. Treatment is complicated and slow but most come through way better than before.
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My son has the exact symptoms.  He is now being referred to specialists.  Please keep me informed as to what you are being told and I shall do the same for you.  His suffering is killing me.
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Melissa,
  My son is almost 5 years old now.  He has been having the recurrent fever for what seems all his life.  We at first thought it was his ears since he did have tubes put in when he was 2 years old.  Now that he is older and able to tell us his symptoms he informs us that his legs hurt in the joints which to me seems like inflammation.  He gets a fever like clockwork every 4 weeks. (102-105).  In between taking his Tylenol and ibuprofen, he is a normal kid.  i am from New Orleans and I am wondering if anyone thinks it may be mold related.  I also have 2 dogs.  Does anyone else have any pets?  Has anyone checked for mold?  How is your son doing?  Have you found a diagnosis?  Please keep me informed.  My KIDS are my life.
Lori
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509877 tn?1315365294
Lori,
Your son's history sounds so much like my Julian's. His started around the same age, and we also had tubes in his ears by age 14 months.. In fact, Julian did not walk until the tubes were put in & that very day when we got home from the hospital, he took off walking without holding onto something for the first time ever. He also had the joint pain & seemingly scheduled recurring fevers every 3-4 weeks also in the range of 102 and up, the highest ever at 107.1. We alternated tylenol & ibuprofen and he would return to normal, but he had vomiting with all of his episodes, and would also complain of stomach pain until the vomiting started & then he would feel relief from the abdominal pain.  We didnt have any pets when he was younger, but now we have 2 small dogs(have had them for 5 years). Julian was diagnosed with genetic testing & skin samples from him, me & dad being submitted to the NIH in Maryland to confirm his diagnosis of Familial Mediterranean fever or FMF. We were very fortunate to find the right specialist (a pediatric rheumatologist) at the right time (the NIH was conducting a study on the genetic mutation that causes FMF at that very time), who was willing to do the work to diagnose my child. He named several diseases at our first meeting and FMF was one of them.  We had a couple of missed diagnoses before meeting the right doctor. And as Julian's mother, I didnt believe the other Dr.'s who were in fact wrong. I believe mom's know their children best. So trust your instincts for your son...you know him best. We never explored any mold relation, but I always suspected a gulf war connection. Is that a possibility for your son? Julian's dad was in the first Gulf War for about 10 months and upon his return, I got pregnant with Jules. His dad is also Italian, specifically Sicilian, and according to the genectic specialist we saw, my contribution to Julian having FMF comes from our Melungeon heritage as my family is from Eastern TN & Virginia. But in our specific testing at the NIH, the research confirmed that Julian & his father have the same identical genetic marker, but have not found the marker in my biopsy. Julian's biggest risk is developing Amyloidosis which is a disorder characterized by the accumulation of an unusual extracellular fibrous protein (amyloid) in the connective tissue of the body. The deposits of amyloid may be widespread, involving major organs and leading to serious clinical consequences(renal failure is most common), or it may be very limited with little effect on health. When he was 5, he had stomach & rectal biopsies checked for amyloid (endoscopy & colonoscopy performed by a pediatric gastroenterologist), which were amyloid free. And since then we watch for protien in the urine which is a first indication of trouble. We see a great rheumatologist, endocrinologist, family physician, nephrologist, & urologist.  He missed lots of school, but thankfully his primary care doctor is an angel who wrote all of the letters needed to accomodate him at his school & the clinic workers eventually understood him, you know how schools are, if they are not fever free for 48 hours & have not vomited in 24 hours, you cant send them back to school. If Jules had to follow those rules, he would not have attended school very often, His biggest problem as he has grown has been less fever attacks, chronic ear problems (2nd set of tubes now he has T-Tubes, which our ENT says are permanent), arthritis problems, & vomiting 1-3 times a week (sometimes less, sometimes more). No matter what he gets, a cold, an ear infection, etc., it usually triggers an attack of his FMF even at age 18. He does live away from home now (30 minutes) and is a full time college student as of this fall. I hope you find the right doctor who can diagnose your little boy and that he will improve. I dont think anyone who hasnt been where we are with a child who is chronically sick can understand how hard it is to watch your beloved child suffer again & again with no answers. I honestly thought sometimes that the doctors thought I was making things up. I kept a journal of dates, times, symptoms & eventually made videos of Julian during an attack to show our doctors & I feel that this was crucial in getting him diagnosed, FINALLY! If I can help you or your son in anyway, please let me know. I know how you feel, and I agreee with you, my KIDS are also my life. Just because he has left the "nest", doesnt change that! Best of luck to you & your family!
Melissa

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My son is 6 and complaining of pain in his right shin... Just below his knee, he has a mild fever and is very tired and just fell asleep while sitting up on the couch. He seemed disoriented and was asking me for a spoon and then his eyes rolled back and he crashed out. Is this normal!? And what could be the cause of such fatigue? Any answers or suggestions would be fantastic.
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My daughter many of same symptoms. She is now 17 and stil has swollen lymphnodes. Back of head. Behind ears, constant congestion, cold symptoms. I have taken her to the dr. So many times it is pathetic!!  Seems NONE of the Dr.'s try to find underlying cause... They just want to prescribe antibiotics and tell us to come back in 2 weeks.  It's like a game.... She needs an ear nose and throat specialist!  This has me petrified!!  
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My daughter as I said is now 17 her adenoids have been a problem since she was little.  Dr's said they may need to come out someday. ? She had severe leg aches as a child I would have to rub them til she fell asleep many many times. She was once taken by ambulance to childrens hospital in Fresno which is 3 hours from me with a severe bout of vomiting that lasted for 2 days and constant... Only to be sent home as if nothing had happened. Her lymphnodes behind ears, side of neck and back of head swell and this is reoccurring. She has had  strep throat, the pus pockets and ear infections with fever that reoccur and skin rashes, as well as conjunctivitis type eye infections... And seems like nose is ALWAYS stuffy.  This has been going on since she was a toddler..... It is frustrating to no end!!  
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Wow! Again looking for an answer...my 18 year old daughter has been dealing with this problem for three years now. Started out with fever and swollen lymph nodes on her neck. Of course after a few rounds of antibiotics and the fever not going away, she was sent to a cancer specialist. She has a bone marrow biopsy and an open lymph node biopsy. She was diagnosed with "KiKuchi" disease, a benign condition which symptoms resemble lymphoma. They sent as home and told us to go see a rheumatologist. My daughter has a phobia of needles and reuses to let anyone take her blood. She has missed so much school...she was supposed to have graduated last year and is now trying to finish her classes. It seemed like the fevers were "spreading" until now. Today will be her fifth day with a fever and out of school. She refuses to go to the doctor, I am just frustrated and desperate. I think I need to help her with her phobia first and then continue the testing. The school is not really cooperating, which I understand since she refuses to go see the doctor. She is such a bright young woman, I hate to see her so frustrated and despisers because of this.
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Has anyone been told their child has PFAPA ?  My son at about 18 months old started spiking fevers of no more than 103 but they were accompanied by loss of appetite, sores in the throat and fatigue more recently accompanied with complaints of leg pain.  We were told for 2 years by our pediatrician that it was Herpese Symplex 2 and it was treated with a 10 day round of Acyclovir.  The diagnosis never sat as right with us and we switched Pediatricians to get a second opinion.  He immediately sent us to a Rheumatologist at Children's Hospital in Fresno, CA.  After lots of blood work (while healthy and again while showing symptoms), questions and thorough examination, my son was diagnosed with PFAPA.  Treatment is 1 time low dosage of oral prednisone.  We did once and have decided to let his body fight it.  As the oral pred.  had a nasty side effects.  He has been symptom free since August 2011 but prior to now, he was having a reoccurence every 6-8 weeks.  Just wondering if anyone else has had this diagnosis?  
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I too have a child who was diagnosed with PFAPA. He started his fevers at age 3 and he is 7 know. He was getting fevers every 4 weeks and they were going as high as 107.6!! I was extremely worried about him, but after having every test done and a 3 day stay at children 's hospital while he was in the middle of a episode. I have found that giving him Tylenol and keeping him as cool as possible during a fever has been the best way to rid of it. I am concerned know because he is getting different symptoms with the high fever, extreme leg pain? Has your child complained of any leg pains during a fever??
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Yes, my son complains of leg pain and it seems to be one of the beginning sign of a PFAPA "episode".  He also usually has loss of appetite and sores in the throat, sometimes a complaint of stomach ache too.  Just today he started complaining of leg pain and was in tears.  Sure enough he has a fever tonight (low 100.2) and had little appetite.  What are you doing for treatment?
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I am certainly no doctor but your daughters symptoms sound like classic PFAPA symptoms.  You might want to check out this diagnosis on line.  Best wishes to your family.  
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I read your post and as I have stated above to Shaya18, I am not a doctor but your son's symptoms sound like PFAPA.  It's a little known about diagnosis and so many of the posts in this forum sound like undiagnosed PFAPA.  I just want to get the word out there.  I was told for 2 years that my son had Herpes Symplex 2 even when I would challenge our prior Ped.  about the 6-8 week recurrence, he would only write prescription for Acyclovir over and over.  Don't give up the fight!  Keep asking questions ... keep seeking answers.  I was worried when we were referred to a rheumatologist by our new Ped., that he thought it was Lupus or Juvenile arthritis ... his blood tests came back with no markers for either and through a process of elimination and seeing how he responded to a 1 time low dose of prednisone, he was diagnosed with PFAPA.  I am satisfied with the diagnosis.  We have a follow up in Jan. 2012.  Once he is older, depending on how often he continues to have fever episodes, we might opt for removal of the tonsils.  He is too young now to take that step.  Best wishes to you and your family.
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I am late to this discussion, admittedly haven't read all of the posts and know many have been diagnosed but has anybody researched the possibility of celiac disease (gluten allergies) as the cause?  It has MANY manifestations - my friends daughter had many of the symptoms described here and my adult friend was having epileptic type seizures that turned out to be from her celiac disease and eating gluten her entire life.  When she stopped eating gluten they disappeared after 5 years of having them and haven't been back (5 years and counting)
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BTW -there is a simple blood test that tests for the antibodies to determine celiac disease or intolerance.
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I just found this sight. what was the outcome of your son?
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I am going through somthing similar with my son and wanted to see if anyone has any suggestions about what tests I should ask my sons pediatrician to perform. My son is 3 years old and for the last six months he has been running fevers every 4-6 weeks. The fevers are only at night and he acts as though he is not sick. They usually last 2-3 nights.The last two episodes of the fevers have been up to 102 - 103.5. A few weeks ago in between fever episodes he went about 5 hours with leg pain where he was unable to walk on his leg. He appeared fine during this time unless he tried to walk on his leg. We took him to the ER who performed x rays and didn't find anything. Last week a couple of nights he was sweating pretty bad where his head and body were drenched (no fever at this time) even though he had a fan on him. The only other medical issues he has ever had are some outbreaks of excema and for the first few years his lymph nodes in the back of his neck were always swollen but my pediatrician said it ws due to the excema. He also has a cough a lot and has been on antibiotics sever times in the last 6 months. When he is on the antibiotics he seems to get better with the cough but then it comes back again when he stops the medicine. His allergy test came back that he is sensitive to cats and dogs so he was on singulair and then switched to a generic antihistimine. His CBC and chest xray both came back normal. Any suggestions will be appreciated
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509877 tn?1315365294
Thanks for the encouragment, My son Julian, was definitively diagnosed with Familial Mediterranean Fever. We have had much improvement with the colchicine treament for FMF. The diagnosis was made by Dr. Dan Kastner with the NIH in Maryland via skin/tissue biopsies several years ago. Julian is now a 6'5" well adjusted 18 year old, soon to be 19 this Jan. 24th & he lives out on his own while adjusting to his first year of college life. I wish you & your child the best. I think as mothers, we know our children better than the doctors!
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I am not a doctor by any means but am a mommy!  After we swtiched Pediatricians and were sent to the rheumatologist, a full blood panel was done on my son - specifically looking for arthritic markers, herpes markers and any other auto immune marker that might show up.  His blood work came back normal.  We had his blood drawn twice ... once symptom free and once while having an "episode".  The key to the PFAPA diagnosis (it's a diagnosis by way of process of elimination) was my son's response to the 1 time low dose of oral prednisone ... within 1 hour he was fine - hyper from the prednisone but completely symptom free and stayed so for 2 weeks than had another episode.  That reaction and then onset of an episode 2 weeks later is "classic PFAPA"  according to the rheumatologist and pediatrician.  We have opted to not treat episodes with the prednisone.  We treat each episode with rotating tylenol/motrin, rest, lots of fluids, and lots of TLC!  I hope this info helps in getting your little guy treated :-)  
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Thanks, we took my son back to his pediatrician after another round of fevers and were referred to an immunologist. We are unable to get an appointment until February but hopefully the wait will be worth it and he will be able to diagnose him.
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have all your kids been vaccinated? It would be interesting to know if the vaccinations have caused the immmune disorders etc
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I stumbled across this thread tonight, and I'm shocked that so many of your children have the same symptoms that my now 17 1/2 y.o. son had in his earlier years that started when he was about 3 and seemed to subside after about 5 years.  I'll share some of our journey w/you in a run-on thread of sentences  - hope it helps or encourages some of you - hang in there, Moms and eat well and get some rest, yourselves! ...Because my son Brandon had so many fevers so frequently when he was younger (along with some vomiting and weakness), and had leg and stomach pains, he missed a lot of KG and 1st grade, and even had to repeat 1st grade, but is doing well now, as a handsome, likeable, funny 6'2" 165 lb, HS junior. When he was sick so often when he was younger, I  got to the point, like Jules mom, where I was able to predict his fever episodes by his leg and stomach pains, and I treated w/ alternating Ibuprofin and Tylenol. Brandon would also get very weak sometimes, and once, for a couple of weeks, he couldn't walk to the bathroom by himself, and vomited a few times/week. We had some bloodwork done, but never really got a clear diagnosis. I started doing some reading and internet searching, looking for some home remedies or helpful practices that i could put into place until we could figure out what Brandon had.  A few things REALLY made a  difference...I made sure that he got LOTS of sleep because his fevers seemed to come when he got overly tired or after he'd had a big day of activity, or got too much sun in one day (sunblock w/titanium!!)  1/2 of a Low dose Melatonin pill in the early evenings a few times a week really helped him get off to a good night sleep, but we didn't want to use it nightly for fear of addiction.  I knew that he needed a lot of rest,  so I let him sleep-in on the mornings after he'd been awake at night, and then I'd take him to school by late morning, as opposed to having him miss the entire day. Even though I kept in good communication with his teachers and the school nurse, and made sure I looked sane, presentable, and drove up in a clean car  when I was at his school (I was exhausted myself most of the time!) it wasn't so popular with the school's attendance office, but...I maintained my composure, and took things a day at a time.  Fortunately, I substitute teach and I'd helped some in his class, quietly from the back, tho - didn't want to be one of THOSE moms - so I knew how to help him keep up.  I also started paying close attention to what he ate and made sure he got his veggies, plant protein, and beans as another source of protein since he seemed to be getting thinner for awhile, just like so many of your children (a little bowl of peas with small bits of bacon and a little butter & salt was a big hit - greens AND protein - and I could cook a lot of bacon ahead of time and just add a little at a time to a bowl of frozen peas that I warmed in the microwave w/a little water) Fortunately, everyone in our family also loves broccoli with a little butter on it (cooked for around 3 min in microwave with a little water in a covered dish to steam it) so we had that several times/week - still do.  I also visited a couple of local health food stores and read their books as much as I could without buying them, trying to find some home remedies or anything helpful.  I read that a vegetable called "Burdock" was very helpful for cancer, and since I didn't know what Brandon had, I figured it certainly couldn't hurt.  I'm not a professional, and I don't know how it was considered to be helpful, but I started buying it, along with Dandelion greens - also very good for cancer - and I scrubbed that dirty-looking burdock root, chopped it like a carrot (didn't peel it tho - didn't know if its nutrients might be in the skin) and I put it in a clear soup that I cooked at a low simmer (so the high temp wouldn"t "kill" the live enzymes in the veggies that were in the soup) and fed B his "warm soup" a lot.  Most times, I just got Ramen noodles and added the Dandelion greens and burdock root slices to it, along with fresh carrot and celery slices, and a little onion - which I'd read was a mild blood "cleaner".  He wouldn't eat the greens - he said they looked like seaweed, so I chopped the stems into small pieces and added them and the leaves to the soup, and pulled the green leaves out of the soup before serving it to him.  I ate them myself, and I felt pretty good - I was very tired a lot myself from being up at night so much with him for those years.  Dandelion greens are cheap, but burdock is a bit pricey, tho I was able to buy just one root at a time in the health food store.  I watched B's sugar intake also because I knew that sugar immobilizes our immune systems for a few hours at a time.  B got to the point where he realized that if he had a lot of sugar, he'd likely get sick, so he started to pay attention to his sugar intake also, though he still had a sweet tooth, but...at least he was aware of it.  When he would get his bad coughs, we'd give him "Honey Loquat" syrup.  GREAT STUFF!  He'd even fake a cough just to get a spoonful. It's about $9/for a short, square bottle - worth ever penny! Very sticky, tho, so don't close the lid too tightly. He finally got over the fevers, but if he overdoes it and misses out on sleep, he'll look pretty tired, pale, and get rings under his eyes, so I still make him stick to a reasonable curfew and bedttimes most times.  2 years ago, he got very swollen lymph nodes that were positioned close to his adams apple and windpipe - not tucked under his jaw, as they are normally.  I started to get worried again & he also looked like he'd dropped some weight in a short period of time, and he had - 10 lbs - and he tested positive for strep.  We thought he might have had  Mono, but it was just strep. He took some antibiotics and unfortunately had a reaction to the amoxicillan - his hands swelled up and he got hives on his torso and thighs that lasted for 1-2 weeks.  Note to myself - "Don't let Docs prescribe amoxicillan to Brandon!"  since then, he's been fine, but he does tend to get worn out sometimes because he is extremely active with skateboarding, so I choose to supplement his food with an herbal plant-based food from a line called Sunrider. Although he's doing well these days and enjoys skating and shooting skating videos with his friends, I do worry about his post-high school years when he'll be on his own more and away at college.  I'm already talking with him about the importance of taking good care of himself - resting and eating well - so he doesn't get so sick that he jeopardizes his college career.  A bad case of strep or Mono could really take a toll, so we're thinking he'll live at home for the first year or two of college - at least we'll know he'll have access to good foods and a better chance at some good rest.   (btw - I recently  tested positive for ANA myself - I had been feeling overly tired again, so my doc did a blood panel.  More tests to come.  I eat Sunrider foods and feel MUCH better when I do - not trying to sell these foods - just sharing something that works for us & maybe will help others...Sorry this was so long, but I hope it was encouraging for some of you that must be  overwhelmed and exhausted yourselves.  I'll be thinking of you all and praying for you.  Thank you for sharing your stories & I'd love to hear your thoughts if you have an older child/adult that's gone through this.  Special thanks to Jules' mom  God bless you!   :)      
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Forgot to mention...the immunization question is a really good one! We've wondered about it ourselves. Brandon had all of his at the appropriate times except chix pox, and we suspect that he may have been given a few duplicates by well-meaning family members that didn't know if he'd had his done already.  Any findings?  
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This thread breaks my heart. But gives me hope. My son isnt the only one battling this. When he was 12 months old for 6 months he got fevers every 3 weeks like clockwork. Obviously not talking, but a lot of doctors test revealed very little. Anemic, didnt have AIDS, meningitis, lukemia ect. Hematologist suggest FMF. Test came back inconclusive, but was old by his pedi that he was sure he had it. So, fast forward to now. Jan, 2012. He is 5. Starting in September of 2011, he started getting the fevers again. He is in the middle of one right now. Every 3 weeks, like clockwork. He is verbal now obviously and his symptoms are knee pain, stomach pain and neck pain, every time. He has been 103.5 for a couple days. He is weak, lays around except when meds kick in. He does not get a rash. I dont know what to do. He has been symptom free for 4 years IF he has FMF, which was not conclusive. He is just so full of problems. I want to cry, he is my sweet boy and I want him to be healthy and happy! I am calling tomorrow and getting him into a doctor, again, after all these years. BTW, he has never been vaccinated, and I had him tested for celiacs and simple blood test said no, although he has A LOT of the symptoms for that and gets constant sores in his mouth and dark circles under his eyes.
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I am 38 years old and I have a recurring fever almost every three weeks, sometimes it is every two weeks.   My first fever was over a year ago and nothing ever shows up on any test!  My fevers run 102 and up for four to five days and gradually comes down over the next two.  Nearly every episode lasts a week.   There has to be help or hope!  Please respond if you have any suggestions at all.  
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Annnatto coloring causes my 4 yr olds recurrent fever/migraines, something to check out...
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I have read through every single post and I know this thread started back in 2008 but I want to thank those of you that have shared your stories. As others have asked I am also curious as to which of the children with these symptoms have been vaccinated.
My youngest son is 2.5 yrs old, he has not been vaccinated (none at all). In December he had a fever and stomache pain, then either middle of January or beginning of February he started having recurring fevers. They would come on for 1-2 days, he'd have a low grade temp of 99.9-101.0... he would also complain of leg pain (usually grabbing his left leg right above the knee). After 1-2 days he would be his normal self again for 3-5 days. Now we are into March and the last two fevers have been exactly one week apart and the fevers have now gotten as high as 102.5 (I realize this is still a mild fever compared to others mentioned but I am wondering if the high fevers becoming progressively worse with time).
One week ago I took my son to Mary Bridge Childrens Hospital in Tacoma, WA. They took xrays of his left leg, took urine tests, blood tests (sorry I dont know the names of all the tests they did). The Dr was thinking maybe a bone infection but that would have shown up on the xray after a month (and he had this going on at least a month at that time). They did a chest xray and then they gave him an intravenous antibiotic (cefroloxin or something like that). Exactly one week to the day he had another episode.
For insurance purposes I have to wait April 1st to take him to the Doctor but come that day I will be taking him in and asking for tests to be done. Although at the same time I dont want to have to put my son through years of testing only to find out its PFAPA which there doesn't seem to be a 'cure' for anyways (from what I've read on here).
I wish all of you good luck and hope that those of you with children going through these symptoms continue to post here because it will definatly be helpful to other parents!
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Sorry to hear about your son's illness. Unfortunately, it does sound familiar. My son was diagnosed at age 4 or 5 with FMF, he is now 19 years old and the attacks are not as frequent. He had all of the recommended vaccines at the scheduled times with the exclusion of the chicken pox vaccine, as his pediatrician & his Pediatric Rheumatologist could not agree if it was beneficial or not, so we passed & he did have a mild case of chicken pox. I cant stress enough the things that I feel helped get my child correctly diagnosed were the very detailed journals I kept & the video tapes we made, they were very real & thorough. It is so hard to remember dates, times, symptoms, & etc. when you are finally at the doctors office & someone is asking why are you here? what has happened in the past? I found that the journals took only a few minutes of my time & they relayed a wealth of information to the specialists. I wish you & your son the best of luck & also healthy brighter days ahead. Remember no one knows your child like you do, so always trust your judgement!
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What about cyclical neutropenia? Sounds like it might fit....
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Long shot that you will see this because it's an old post but we have been experiencing the same thing with our 13 year old daughter for a year now.  Recurring fevers about every 2 weeks.  Fever between 103  - 106 that lasts from 3 - 5 days.  The episodes present with severe lower back pain, leg pain, joint pain and headache.  Fatigue is so severe that she sleeps 18+ hours per day.  She has been to Stanford Children's hospital and tested for every single thing the doctors can think of with no diagnosis to date.  She is missing tremendous amounts of school and I am very worried about the long term effects of prolonged motrin and Tylenol usage.  She had a stretch of 4 months without an episode but has been ill again for 2 months now.  Did you ever get any firm diagnosis on your child?  We are beyond worried!
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You are right doctors need to look again my son is 4yr we live these problems day in and out I found the awnser cure and reason call or text ASAP if you want to know the truth day or night any time you ready for the truth  my name is Teri Ann my Internet is down to much to post from phone I live in Kennewick wa (509) 440 1460 Teri.***@****
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It's Called Meningitis  it was caused by Melamine it was intentionally dumped into our food products that are imported from China from our baking goods coffee creamers baby formulia animal food yes that means our american cows chickens our main food source means our food has been contaminated with melamine. When melamine hit's High heat levels or sulferic acid it causes a cymical reaction producing high levels of amonia in the blood. The human body can not process high levels of ammonia when this happens it causes a infection in the brain and spine, not just causing high fevers leg pain back pain but autism also known that all autisic children are suffering from a brain and gutt infection. yea I said it then what happens is cronic inflamation because your body can not defend its self please look up cronic inflammation its causing Obisity world wide arthritis joint pain diabetes pelvic inflamation kidney failure liver failure this is so bad!!! not just our babys Alltimers heart attacks Phomonia hearing and vision loss every thing out there im going to suggest every one to go buy Zio Light Enhanced with DHQ research it and start living it because America is in big big trouble time to fight back and make it known there is a problem and these doctors arnt doing a damn thing about it we can't make all the painand hurt all go away because we have been living with this day in and day out it  is our Job as mothers to protect our baby's and consol them when there in pain and protect them and find out the problem and fix it now's your chance time to fight this is america right we talk about our soldiars fighting at war to protect this country. well mom's its our job as mothers to be our babys soldiars  and fight this war for them this is america and this is so wrong what it is doing to our baby's .
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I sit here&read these posts&cry. My daughter since a year has been going through fevers every month. They kept getting worse each time. She could hardly get up&was so wore out. We started seeing a pediatrician for infectious disease&she would get her blood drawn with each fever but she didn't fit the bill for periodic fever syndrome because the fevers were not exactly 4 weeks apart. Sometimes they were 4 sometimes 3. I don't even know allt he tests that were run, I feel like she had so many. The specialist told me she would eventually grow out of this, she put her on a steriod(prednisolone syrup) to take when the episodes would come up. We gave it to her 3 months in a row&everytime she would take it the fever would go right away&it seemed to be working. I never re contacted the Dr&I tried to not worry&know that it was delt with. She didn't get the fevers for about 3 months after that&then she got it so bad she couldn't move for days. I took her in after 3 days of a fever not going down of 103.7, they took blood tests. everything was always fine, just her white blood count was always elevated which just means she is fighting off an infection. They told me to contact the specialis. Since then we have changed insurance&had to change Dr's. I have let it go&feel like I don't know what to do because I haven't been tracking her fevers&I didn't re contact the specialist. I feel so bad! Today we took her to the Dr. She has a high fever that isn't going down, but now she is complaining of leg&arm&stomach pain.What should I do? Do I start now writing everything down? I feel like I failed at not being on top of it&trying not to worry. Now all this time has passed&I don't have anything documented&she hasn't seen the specialist in over a year. I feel so bad always making her get her blood drawn, when it always comes back as fine(with the elevation in white blood count, which I am always told is her fighting an infection) What should I do next?
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I sit here&read these posts&cry. My daughter since a year has been going through fevers every month. They kept getting worse each time. She could hardly get up&was so wore out. We started seeing a pediatrician for infectious disease&she would get her blood drawn with each fever but she didn't fit the bill for periodic fever syndrome because the fevers were not exactly 4 weeks apart. Sometimes they were 4 sometimes 3. I don't even know allt he tests that were run, I feel like she had so many. The specialist told me she would eventually grow out of this, she put her on a steriod(prednisolone syrup) to take when the episodes would come up. We gave it to her 3 months in a row&everytime she would take it the fever would go right away&it seemed to be working. I never re contacted the Dr&I tried to not worry&know that it was delt with. She didn't get the fevers for about 3 months after that&then she got it so bad she couldn't move for days. I took her in after 3 days of a fever not going down of 103.7, they took blood tests. everything was always fine, just her white blood count was always elevated which just means she is fighting off an infection. They told me to contact the specialis. Since then we have changed insurance&had to change Dr's. I have let it go&feel like I don't know what to do because I haven't been tracking her fevers&I didn't re contact the specialist. I feel so bad! Today we took her to the Dr. She has a high fever that isn't going down, but now she is complaining of leg&arm&stomach pain.What should I do? Do I start now writing everything down? I feel like I failed at not being on top of it&trying not to worry. Now all this time has passed&I don't have anything documented&she hasn't seen the specialist in over a year. I feel so bad always making her get her blood drawn, when it always comes back as fine(with the elevation in white blood count, which I am always told is her fighting an infection) What should I do next?
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Demand answers!! So often we (parents) take our children to the doctor praying they will cure our child but instead we get "It's just a virus".
We are the only voice our child has with these doctors, if we dont stand up and say "I don't accept your answer, I want you to look deeper.." who will?
I have a 5 year old who has been experiencing the same symptoms. She will complain of leg pain often, complain of stomach pain, and about every 2 to 4 weeks run a fever for a couple of days with no other symptoms. At first, I thought the leg pain was growing pains, the stomach pain could have been related to so many things, and the fever was never out of control. Until now. Friday morning my 5 year old daughter woke up with a fever, about 101.3 and red cheeks. She said her stomach and legs hurt..No other symptoms.  I started giving her Tylenol and Motrin, cold wash cloths, cool baths..all those mom treatments but by Saturday mid morning her fever was 105. We ended up in the ER at 6:30 pm. The doctors tested her urine, took chest x-rays, couldn't find anything, so they called it a virus. As I sat at the hospital with my sick child, I started thinking about all the times she had been sick over the last year, things started adding up. I did an internet search and found this site. I am now more determined than ever to find the reason my child and so many others are experiencing these symptoms. I will start keeping a record of all illnesses and how they effect my daughter. I ask all of you to do the same. I plan on checking this web site often to look for updates, so PLEASE post anything about your child's diagnosis, treatment, and progress. I will do the same for all of you. If we ban together and demand answers, we will be heard. I refuse to let my child suffer because a doctor did not look close enough. Let's work on getting these children better so they can live Pain Free!!
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My son is now 13 months and has had a fever almost every single month since he was 3 months old.  Every time, the doctor said it was a "virus" or my 4-year old brings germs from preschool.  At first, it made sense, but then I started doing research and refused to believe that my child had a virus with no symptoms other than fever every month that started out f nowhere, lasts 3 days, then goes away.  Last month, I noticed that in addition to the fever, he had pain attacks, I believe in his abdomen.  I immediately told our pediatrician to refer us to a specialist for diagnosis of FMF or Periodic Fever.  We were seen at Children's Hospital Los Angeles. During the next fever episode, took my son to ER and had blood work done, wihch showed elevated white blood count and inflammation.  The genetic test for FMF showed one mutation of the M694V gene, which does not confirm the diagnosis of FMF.  However, with the recurrent fevers, it is possible that he does have FMF.  We had the last fever episode 3 weeks ago and waiting for the fever to come back any day!  The rheumatologists at Children's Hospital are amazing! If the fever comes back and my son has what appears to be abdominal pain, we are going to start him on Colchicine to see if that will reduce the frequency of the fever and abdominal pain attacks. If it does, then he will be diagnosed with FMF based on clinical symptoms and one gene mutation. We are of Armenian descent, but no history of FMF in our family.  The point of my comment is that if your child has recurrent, unexplained fevers, SEEK answers.  Have them do tests and possibly genetic testing.  KEEP a journal of all all the episodes and signs.  No one knows your child better than you do!!! If something doesn't seem right, then don't let the doctor tell you it's a "virus." They are not the ones dealing with the pain and watcing our kids suffer!  
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My son is 7 he has had the reoccuring fever for 2 yrs now. It started after he had passed kidney stones and had to be put on antibiotics. Along with the fever he has severe leg cramps, head aches, and stomache cramps. This happens every 2 weeks for 48 hrs. Last year it stopped for a month. Then he got sick and they done a strep test. It was negative. Dr gave him antibiotics. As soon as the medicine was finished guess what followed THE FEVER AND PAINS. Hasn't stopped since. It's like clock work every two weeks. If anyone has had any progress please let me know. I am pretty sure I have put all the Drs. kids thru college here with all the bills. It's also hard on him to stay caught up in school because of missing so many days.
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If the fevers occur around full moon, it is a parasite in the intestines, Lyme, bartonella, babesia, mold, neurotoxines they cannot naturally eliminate, ... or another nasty intracellular animal. Very difficult to detect. Read the website from ILADS or send the blood to Igenex.
All the best
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Sorry to hear about your son's illness. Unfortunately, it does sound so much like the attacks that my son

suffered from for a long time(honestly even after we had a "CONFIRMED" diagnosis,  and he started the

recommended meds, he still got them but less often. Julian had two different rounds of kidney stones

before he was ten, very painful and so hard to watch a child crying in pain. He also used to get the "paints"

as he called them, he had leg pain, head pain and severe stomach pains that were only relieved by vomiting,

during these times he would have high fevers, mostly over 104 degrees. I always found they were cyclic, or

in a patter like sometimes they would be every 3-4 days last for 2 days and then start all over, and

sometimes he would go up to two weeks in between them. And thankfully with age (or meds) they are less

frequent now.  My son was diagnosed at age 4 or 5 with FMF(Familial Mediterranean fever), he is now 19

years old and the attacks are not as frequent, he has decided on his own, to stop the colchicine(which is

the medicine he should take daily per doctors to prevent the attacks or flare ups and therefore keep his

immune system from producing Amyloid, which is the serious complication he may develop). With his

decision to no longer take the medicines, he has completely changed his eating habits, he only eats fresh

organic fruits and vegetables, broiled or grilled fish, and some specific hormone free chicken breast, only

drinks water and will not drink from plastic water bottles that could contain BPA, so he has a really nice

glass one that he sanatizes and reuses. If my mother were still alive, she would call him a health nut lol! I

am supportive of the dietary changes, anb as long as he doesnt have several attacks, I will try to accept

his decision to stop the medications. Some people mention childrens  required immunizations and a possible

connection, I dont think that fits our situation as Julian has had all of the recommended vaccines at the

scheduled times with the exclusion of the chicken pox vaccine, as his pediatrician & his Pediatric

Rheumatologist could not agree if it was beneficial or not, so we passed & he did have a mild case of

chicken pox. I cant stress enough the things that I feel helped get my child correctly diagnosed were the

very detailed journals I kept & the video tapes we made, they were very real & thorough. It is so hard to

remember dates, times, symptoms, & etc. when you are finally at the doctors office & someone is asking

why are you here? what has happened in the past? I found that the journals took only a few minutes of my

time & they relayed a wealth of information to the specialists. I wish you & your son the best of luck &

also healthy brighter days ahead. Remember no one knows your child like you do, so always trust your

judgement! Please keep my posted, and at this point If I were you I think seeing a specialist in immunology

or rheumatologist. If you would like to message me on here or privately, I would be happy to listen and

possibly offer suggestions if I have any that could help.  And is there any possible connection to the Gulf

War? Julian's dad was over there for 7 months during the first movement, and he came home in early 92

and Julian was born in Jan. 93. I always wondered about a possible connection and have talked to one

other mom who was the service member who served in the Gulf area, and one more like me, and her child's

father was the person in direct contact with the Gulf. Just curious.
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My son had his tonsils and adenoids taken out at the age of 2. Today he has been complaining about a sore throat and stomach ache and has been moaning all night in his sleep
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I was wondering when reading the posts if brucellosis was tested for. Its a bacteria (eradicated in uk so many GP not aware) but could be caught on a foreign holiday (can incubate up to six months) through unpasterized milk, cheese or undercooked meat. It causes fevers and body pain that came come and go; can be treated with a certain combination of antibiotics over three-six week period. Worth reading about it, just to see if symptoms fit the bill. You can do a antibody blood test to specifically check for it. Blood cultures don't always pick it up because it takes longer to incubate, so you have to be looking for it to spot it. I hope this information helps someone out there....
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9968547 tn?1406977860
well my daughter is ten few days ago she was by her dad and I pick up to go see a movie she was  telling mom my left foot hurt I thought may it her bad knee she has .so after the movie I drop her back at her father  and got ready for work , her step mom call me that she has fever and headache a hour later check her temp it a 100  all throught the night it got after I all ready give her children bayer what should I do or what do u think it not common that she has a fever with so much pain and rarely has a fever as well
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Seen this many times before. Usually child is exposed to/ or diagnosed with strep. Amoxicillin is prescribed. Amoxicillin does not kill this particular strep(there are many) and the child goes into a cycle of fever/aches/pains etc. Zithromax kills this strain of strep...but is more expensive than amoxicillin....soooo...most Pedi RX amoxicillin. If you try to tell a  doc that  amoxicillin isn't worth the plastic bottle it is put in...they will argue endlessly. Since they control the RX pad ...you will get what they want to prescribe.
Headache,bone ,joint pain, back pain,fever...all symptoms of the strep. Although doctors will tell you T&A will not stop the reoccurring fevers etc,it works 99% of the time.
Use CT scans and MRI's sparingly, for they have extremely detrimental effects on the child when they reach pre teen age.
Plus...they are not necessary it the diagnosis of this problem.
Some antibiotic,(those given IV ..like Vancomycin) can cause hearing loss and a whole new set of problems,causing confusion in diagnosing the child properly in future reoccurrences. Please believe me  when I tell you one doc will not "rat out" another doctor for giving high doses of strong antibiotics that has caused these damages. He may know the damages were caused by high dosages or by(improper) rapid infusion of some meds...but he will not even hint that this may be the cause of hearing loss..or visual problems your child now has.
The cyclic patern of the fever is the give away in all this....and the exposure to/diagnosis of strep.
The trick is to get the strep treated properly from the start. Refuse amoxicillin,or if 100 % wellness is not achieved after taking full course of amoxicillin....ask for Zithromax.
Improperly treated strep can cause many residual symptoms. All were listed in the  posting all the mothers described  on this site. So each time you go back to the doc you have another symptom to list...not knowing that your previous course of treatment was the culprit that has caused this new symptom to appear.
What worked.
Having a T&A.( Doctors will tell you it wont do any good...but it does work...and it works amazingly well.)
Avoid CT scans and MRI's.
Proper treatment on first occurrence.
Good luck.
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Having same issues with my 6 Yr old and looking for answers-  found a study about HIDS....anyone have any info on it??
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Same exact as my 6 year old- did you ever get an answer or relief??  
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C reactive protein high, sed rate high, high white count, urine with high leukocytes, I've had these test results all my life, she has FMF.
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This post about your child's illness was a long time ago, but did you ever get a diagnosis?
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why not we make a list of vaccination our child was given and lets see whats common. maybe oir child were given some vaccination which are causing.
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