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?

[capermom]

If you don't get answers, don't stop. Go to see another doc or pediatrician until you get answers. That doesn't sound like anything to mess with. It sounds like some kind of infection or something with the fevers all the time, leg cramps could be a sign of alot of things and the symptom may not even be related. Search all you can! Good luck.

[jo737]

Since my daughter has been 10 months old we started noticing she was getting fevers ever month she is 7 now and she is still getting the fevers. The fevers occur about every four weeks and last three to four days. They start out as getting knee pain a few days before fever starts, then she complains her eyes hurt  and head hurts. Her fevers get as high as 105 and she vomits at least once with each episode.We have been to an Infectious Diease Doctor when she was 2. He said he couldnt find any thing and she would grow out of it by kindrgarten and she has not.  When she was five she had Pansiusitus surgery and Adnoids taken out. Arthritis levels were a little above normal .We have been to a rheumotologist he said her joints are good.Been to an Allergy Doctor no allergys (allergies).Right now we are seeing a childrens cancer specialist she cannot find anything. She has been on so many antibiotics and nothing seems to work. Last year she was diagnosed with Ocular Melanocytosis the spots were in her eyes since birth. We have kept calanders since she was two. With all this going on with her it seems like the Doctors are taking same tests and were not getting anywhere.

[wonderme]

Have your kids been checked for lyme disease?  Can have fever and joint pain...

[jo737]

Yes she was already checked for lymes diease and it was negative.

[wonderme]

Sorry I can't offer any other help.  That must be so difficult...perhaps you should consider switching doctors -- just for fresh insight.  Maybe they can list for you all the causes for recurring fever (are her hormones ebbing and flowing on a regular basis, even for her age?) that also cause joint pain.  And then the most common causes for each seperately...AND then tell you how they have ruled them out -- are there conclusive tests...was she tested specifically for it, etc.?

Again, I'm sorry I can't help.  We're all here if you need to talk and bounce ideas off of...

Anyone else have any ideas?

Good luck.

[MasonsMommy03]

If your child has ever had a strep infection (viral or bacterial... most kids have). Then she may be suffering from post strep arthritis. It is often overlooked and misdiagnosed. But, her symptoms fit. You might suggest that option to her physician. Google and do your research. And remember, you are her mother. Trust your gut. If you feel that something is wrong, then keep fighting. You know your child better than anyone.

[jo737]

Thankyou for that information i have never heard of that before Its something to look into. Some of the symptoms sounds like what she has, but we noticed her getting fevers every month at around 10 months. In one of the articles it said it usualy starts at about 2yr. and up. will ask her doctor about this.

[jo737]

My daughter had a reoccuring fever over the weekend so I took her in for blood work. I asked the doctor to check her for Post strep arthritis he said he did once before but it was negative but he will test again. He tested for strep throat which was negative. CBCs white count ok sedrate alittle elevated. Today they called and said her throat culture they took , that she has staph infection in her sinuses. She goes in for CT scan tommorrow, and antibiotics two weeks. I pray to God this was her problem all along and this was her fever problem and now we can work to fix it.

[Tasies_mom]

My daughter is almost 9 years old.  She has had recurrent fevers since she was about 2months old.  She would wake in the middle of the night screaming owie but this was before she could convey full thoughts.  Once she got older and could tell me what was hurting it was her legs.  She had surgery two years ago to straighten her legs (femoral anteversion).  She still has pain in her legs, enough that she can't walk through a store to grocery shop or run in PE.  She still has fevers as well.  She had a genetic test done about 4yrs ago that showed positive for a mutation V726A which is on the MEFV line so they said she has Familial Mediterranian Fever.  Now the docs say she doesn't fit the "symptoms of that disease".  Her rashes, fever, eye pain, joint pain, headache, stomache ache, chest pain, arm pain don't match.  I have had her to so many different doctors, clinics, insurances I can't keep count any longer.  I'd like to hear if anyone has made any progress with your children.  I'm at my wits end here, and my daughter is getting old enough she knows she's different (teacher comes home to teach for the last two years) that she is getting pretty down.  I'm getting desperate.  Look forward to comments.

[jo737]

I know what you mean about being at your wits end. Since i wrote last my daughter has been tested for a few more things. Her Iga levels were tested which was fine. She got tested for Cystic Fibrosis which came back borderline. The doctor didnt know what they mean by borderlin, so she has to go to a pulmonary doctor next month. She is also going to see an Immunologist next month also. She had a MRI done last month during her fever episode to see if she had any brain during her fevers that came back normal.Im kind of ify on the Cystic Fibrosis because her only symptom is recurrent sinus infections it doesnt mention any thing about recurrent fevers. also had her tested a few times for  Fam.Med .Fever it came back negative. If yor daughters mutation was positive i would go on that and get her retested. I have been to a lot of doctors also and i have been told she wiil grow out of it by the time she is in preschool , also that they cant do any thing about it,like I was making her fevers up. I finally found a doctor that is taking interest in her symptoms.Any suggestions would help..

[jo737]

I should of proof read what i wrote before i sent it. The MRI was done to see if she had any brain swelling during her fever episodewhich came back normal. She does have a brain!

[shadowserpent]

this scares me a little as my 5 year old son has had reoccuring fevers and wakes in the night at least once a month complaining his leg hurts, i just thought maybe it was growing pains but now im worried let me know what anyone finds out!@

[Tasies_mom]

Thank you all for posting.  I am very sorry you and your kids are going through this but I have to be a little selfish, I'm glad it's not my imagination.  Just had Tasie to the doc again today.  She woke with a fever, sore throat, headache and tummy pain.  The doc tested her for strep (which I guarantee 100% will come back negative like always) and a urine specimen (which will not show anything as usual).  I am so frusterated.  We had found a great doc, she was actually a student and once she graduated went to St. Judes.  Good for her and those kids but I miss her.  So I'm going to send Tasie's current doc an email.  I'm going to ask if he doesn't want us for a patient please say so and we'll find someone else.  I'm also going to let him know that I was watched while Tas was in the hospital for abuse.  Came back negative, I wasn't abusing her or making up her "sickness".  This is ridiculous.  She can't make it through a day at school so she has been home taught by the school district for the past two years.  

Jo737 I am very curious about the CF being borderline.  I am really interested in what comes out of the immunologist visit.  Tas has seen a geneticist, but they said she outgrow it, without doing any tests at all.  He said he didn't want to see her again for about 3yrs.  Ugh.  I have been thinking about asking for a referral to an oncologist just because they dig a little deeper into the body.  That's a scary thought though, even though she's been tested for other cancers and they've come back negative.

Has anyone noticed any changes in bloodwork?  CBC, Whites, sed rate?  Tasie's white count skyrockets sometimes and her sed rate is slightly elevated quite often.

[jo737]

My daughter wakes up the same way when her fever comes on headache eye pain sorethroat. She has not had stomach pain for  a while when she was littler she would double over from stomach pain,. When she does get her fever white count and sedrate is up but the Doctor says its not enough to worry about. They always check her for strep  also which I tell them everytime she doesnt have strep and it comes back negative except for the staph she had a few months ago. I also homeshool my daughter because  with her fevers once a month and whatever other colds etc. she gets in between. She would never make it in school.

[Tasies_mom]

I let Tasie's pediatrician know about this webpage.  He found it interesting, others with the same complaints.  He did ask me to ask you all if you'd be willing to say what tests your kid(s) have been through in an attempt to get a diagnosis.  

We took pictures of the rashes that Tas has and sent them to the doc, it was great that he got to see what she goes through.  We are talking now about going to Seattle Children's Hospital to see an immunologist and possibly starting a medication for the immune system.

We haven't found naproxen, tylen, ibuprofren, prednisone to do her any good.  Has anyone found anything that relieves the fevers, pain and rashes?

[jo737]

For my daughter Ibuprofen seems to take her pain and fevers down but i have to make sure she takes it every four to six hours through her episodes. I have only noticed in her eight years of having these episodes ony a few times she has had a small rash, which was years ago. With FMF rash is one of the symptoms. Does your daughter have sinus problems? How long do her fevers last and does she get them ever month? I will look through my paper work to see if i have some of what she was tested for. That is one thing i should of wrote down but I didnt. Could you also let me know what your daughter was tested for so i could ask my doctor about the test. Hopefully I will find out more things when she goes to the doctores next month.

[Tasies_mom]

Tasie has a stuffy nose quite often but when they have looked at her sinuses they have been clear.  Tasie has fevers every week.  Sometimes they are only 100, about once a month they go to 103.8.  Her lower fevers can come and go and don't last more than 4 hours.  The 103.8 usually last 2-5 days.  So far tylenol and ibuprofen have not decreased the fever it continues to climb.  I have all of her paperwork out, I'm trying to put together a notebook.  I'll gather a list of her tests and post them here.  It may not be until next weekend.  She has had an ANA test done at least once a year since she was 1 and it was never elevated.  We had her in for labwork during a high fever episode back in November and her ANA was finally elevated.

[urbinas707]

I was just doing a google search about leg pain in children because my 2 year old daughter has been complaining of pain in her legs, knees, feet and sometimes ever her arms and hands for quite some time now.  I scheduled her an appointment to see the Dr. because she has been having recurring fevers recently as well.  I am not sure that they are related to the pains, but to be safe we wanted to have her checked out.  The doctor believes that these pains are due to a build up of lactic acid due to her activity level. Apparently athletes experience this quite a bit after a very active day.   Because my daughter complains mainly in the evening and night time this was the diagnosis at this time.  The doctor recommended charting the times the pains are occurring and as long as they are not interfering with her daily activity, she should be okay unless pains worsen or additional symptoms arise.  Not sure how much help this is to anyone, I didn't get a chance to read every comment that has been left, but hope it helps someone!

[Tasies_mom]

Tasie has had the following tests:

FMF - positive for genetic mutations V726A and R202Q
ANA - first positive done in late 2007 the rest were always negative
IgD - didn't show anything
Lyme Disease - waiting for results
SED rate - occassionally high
C reactive protein - usually high
CBC - somtimes shows very high white count
urodynamics testing - couldn't finish the test it was invasive and traumatic
nerve conduction tests in each leg - showed miled lessening in the left leg
bone scan - didn't show anything
x-rays - didn't show anything
strep cultures - never had strep
urinalysis - she just came up positive w/ leukocytes in her urine yesterday
crohns disease - waiting for results
other tests I don't know what they were for and so far have not shown anything

I think that's it.  A bunch of tests were just done Thursday so we'll see what comes of those.  If I think of more I'll let you know.

[jo737]

Did  your daughter ever get tested for stills disease?

[jo737]

My daughter was to the Pulmonary Doctor he said he does not believe she has Cystic Fibrosis but he wants her to take a Gene test for CP just to make sure she does not have it because of her borderline sweat test.

[Tasies_mom]

Good luck with the test.  Did he have any suggestions or notice anything?  We are waiting for a referral to another allergist.

[jo737]

He didnt notice anything. When she took the breathing test he said everything seemed fine.She was suppose to go to the Immunologist last month but her appointment got moved to May due to Doctors family emergency so now I have to sit back and wait for that. Last month we went through a bad fever episode for 4 days. In between she keeps complaining of knee, head and eye pain. Have you found out anything more on any tests?

[jo737]

If you type in Periodic Fever episodes in the search MedHelp section at the top theres a forum their that talks about fevers and a doctor answers your questions, I just found it today so maybe that will give us some help. I got into the Immunologist wendsday. He did not do any blood work. When she has her next fever episode next month hes going to take tests then. Right now he took down symptoms and getting all paperwork faxed over so he does not run the same tests. He is going to check IgD for sure other workups I will know when we go back.

[vtmomof3]

OMG!  I can't beleive that other people are experiencing this!  I have a 4yr old that has had recurrent fevers since she was 3mths old.  We have seen every specialist and have had every test done!  Still no answer!  She has been hospitalized twice and we spent yesterday in the ER.  She has high fevers, blood in her urine during these episodes.  I feel like the doctors think that I am crazey because I am convinced that something is wrong!  It is not normal for a child to get sick every month!
If anyone finds any answers please post them!!

Thanks!
                                                       Worried mom

[jo737]

Hang in there. Its a long road, I finally found the right Pediatritian now we just have to find the right specialist.I pray this Immunologist will find something when she goes  If a doctor tells you she will grow out of it keep searching for an answer because that time your waiting for her to grow out of it which may or may not happen, the symptoms seem to add on as they get older which is happening with my daughter.If your convinced something is wrong keep going with that because you know your daughter better than anyone.

[au3]

Hi,
I found this website because my 4 yr old has been getting high fever of 104 with leg and stomach pains but it only last for about 24 to 48 hours tops and then she will be fine. I thought is was growing pains. She has had them for about 2 years. They were not frequent spells until the last two months where it happened 3 times. Today is day two and she is only complaining of pain in her legs. My husband is a surgeon and never worries about anything but I think it can't just be a different virus everytime.  I am a teacher and come home with strep every year and she as to my knowledge has never had strep but she also has never been to a doc for illness. Her illness just doesn't seem normal which hers sounds familiar to some of yours though she has never had a rash. I am glad for all your comments it makes me feel like I should look into this weird illness.
Thanks
alu

[imaginemelissa04]

Hi all! My 15 year old son has had all of these vague, recurring symptoms from age 14months and up, and I completely understand the feelings you are having. It was like a scheduled illness, every 2-3 weeks a mysterious fever that would rage over 105 then go away, a stomach ache, vomiting, rashes in various places, leg and toe pains, strange lab results, elevated white counts, very high SED rate, rare shapes in blood cells, positive ANA, positive Lupus, anti caridolipin positive, etc. I was told some many WRONG diagnoses including leukemia, scleroderma you name it. Finally when he was 2 ½ yrs old we met the rheumatologist who gave us a name of 3 suspected illnesses at first meeting and he had it correctly diagnosed within a couple of months. We were fortunate that at the time he was being actively diagnosed, the NIH was identifying the genetic markers for his illness, FMF, or Familial Mediterranean Fever. He was confirmed thru much testing to have this illness. He also has moderately severe rheumatoid arthritis from this illness. We started him on the meds that our Dr. recommended at age 3, colchicine daily. He has been on the meds for 12yrs and has had to take a lot of Prednisone too for bad episodes that don’t respond. I will say that his puberty has been really delayed and he struggles with day to day, but so far he’s ok. Please keep pressing your dr’s and look at some of the rare diseases out there. I would love to discuss any of your children’s symptoms further just contact me. And good luck, trust your instinct moms! You know your child better than anyone else. I refused to accept the first 3 diagnoses which were wrong in our case.

[imaginemelissa04]

You said she was postive for the genetic mutations for FMF, so why are they not treating her for this? The meds do work, i know from experience. My son was also tested for IgD and it was negative. I think you should explore a pediatric rheumatologist they def. saved my childs life! Of course we now see a cardiologist, neprhology, urology, immunology. I also credit the immunology dept at Vanderbilt University, they were great! I would love to know how she is doing?

[jo737]

Can you tell me the specialsist you seen in Knoxville? Right now Im seeing ETSU Johnson City specialists.  I have been to a Infectious Disease doctor at Childrens in Knoxville at 2 He took 5 mutations for FMF back then all negative.  Rheumotologist, was seen end of 2006  He just moved her joints around and said he didnt think she had Arthritis because her joints moved good and no swelling. She only has joint pain before onset of fevers usually in the knees. and a few times during the month after fevers.

[imaginemelissa04]

We originally saw a pediatric rheumatologist in Knoxville, a Dr. Wolf, and he gave us one of the wrong but closer than others diagnosis. I dont think he is there anymore. We have also seen a rheumatologist in Johnson City at ETSU, but he is not a pediatric specialist and has never had another case of FMF, so we are once again looking for someone. Our original pediatric rheumatologist, Dr. Hurd, retired on us, it was like a death in the family. We loved him and he was the only ONE who diagnosed my son accurately. He really pushed for the answers and was willing to help us no matter what. What other tests have they done?

[imaginemelissa04]

also dont know if this would help you all, but we actually had to make a video of Julians attacks, they ALWAYS happened when no specialist was around. Our dr went on to show them at a conference on FMF and related illnesses since no one has actually seen a full blown attack from start to finish. We even followed him into the bathroom and got the throwing up, gross as it was, we just wanted accuracy. I think it was a big help in diagnosing him. If I can assist any of you, please let me know

[jo737]

Well I know we had alot of CBCs done, Cat scans ,MRIs, IgA , strep throat, Lymes Disease, Cystic Fibrosis, Arthritis. FMF 2x atyears and again the end of last year.
I didnt keep much of a record on tests that were done. I know the doctors have them on file and i should get copies. I have been keeping calenders sice she was 2. On her complaints and temps, when she gets her fever. i go back to the Immunologist on wednsday. I  am suppose to take her when she has a fever episode, so I will probably going twice this month. It seems like when you tell the doctor about when you think shes going to get a fever, she ends up getting it a week or so later. Then the doctors second guess you and it does happen that way. My daughter seems to get her fevers on a friday when no one is in the office then by monday shes always better except for the swollen glands in her neck and white spots on her throat, and low grade fever. Then I dont take her in because i know they will check her for strep throat, which she never has.She also has been on alot of antibiotics which never help. Except when she had the Staph in her sinuses a few months back.She gets tests done levels show above normal you takeher to the specialist and they say "I think she doesnt have that" then were back to square one. I cant wait to see about the IgD test. About a year ago I showed the doctor my paper work on IgD syndrome and he said he could check that. When they sent her blood work to the labs they checked her IgA instead, came back normal.Still never checked IgD

[imaginemelissa04]

I understand, I also kept a log of Julians "episodes" when he was younger, and my Dr's all gave me the "doubtful" looks, and I also was able(and still am) to see the beginning of an episode days before. I trust my instincts even though soooo many times they told me it wasnt possible and I had to be reading the temp wrong. That is why I think my video was so crucial, we even filmed the thermometer as it started and during till the end of the check to show the numbers rising and end reading. It was a very long road getting his diagnosis but I do credit our dr. in the end, like I said before, he named FMF as one of three possibilities and had it completely diagnosed by third visit. We also thought IgD for a while, but was ruled out. One thing you need to watch is where are they sending your labs? Our dr was very specific that not all labs are equipped to do the fine tune testing needed to make this diagnosis or any difficult auto immune disorder diagnosis. When they did your FMF testing was it thru a skin biopsy? How about urine, does it ever show any proteins? Any kidney issues? Jules has had several stones, and also been biopsied for amyloidosis, which was negative when done. Our samples were sent to the NIH and they found the genetic mutation on the same area in Julian and his dad, but so far not found in my sample, which brings up another issue since it is an autorecessive disorder and I am told that I have to carry the marker gene as well. I suspect a gulf war connection since his dad was active in first Gulf War before we had Jules. Julian also had chronic strep and still gets lymph node swelling. His attacks then are a little different now. He started with headache, sore throat, then stomach and leg pain, then fever would start to climb (once it got to over 106- I nearly fainted) he would hold his stomach, moan and groan, then start to throw up, then he felt a little relieved till the cycle would start over. I know it is hard, they almost had me convinced I was nuts or he wasnt sick, but I kept on till we found the right combination. Keep me posted and I will look at his older tests, maybe something will stick out. How is the Sed rate? They need to check it often.

[Cat543]

My daughter was born with a 104 fever. She had left side hydronephrosis. Beth finally outgrew this. She does have stomach issues and acid reflux. She has a history of running fevers also. Today, the fever got up to 104.7. I notice when the fever is up, she complains of body aches. Last week she ran a low grade fever. Are there any good specialists in Johnson City? Beth already sees Dr. Watad-nephrology, Dr Abdel-gastrologist, Dr. Jones-asthma, Dr Smith-kidney, and her primary doctor. Does anyone have any suggestions?  

[Tasies_mom]

I am sorry to hear of everyone who is going through this.  It is nice, in a selfish way, to know you are not alone.

My daughter, Tasie, was diagnosed with mutations V726A and R202Q on the FMF line.  This was done by the NIH.  I have conversed many times with Dr. Kastner, who is with the NIH and one of the two docs who found FMF.  The docs to agree that those tests were accurate and she does have those markers.  She does have recurrent episodic fever, with chest inflammation, and skin rashes.  She also complains of stomach pain, joint pain (knees, ankles, elbows) and aches her upper and lower legs and arms as well as headaches.  She is also losing her hearing (nerve deafness), has auditory dislexia, has eye sight issues, often sore throats, is tired often.

Why they don't treat her, I don't know.  They say she doesn't show the "signs and symptoms" of FMF.  I keep trying to explain to the docs that they don't even know what the "signs and symptoms" are.  So few people have it.  I am in conversations with a young man in greece who has FMF.  He was diagnosed by his parents who are surgeons.  He agrees that she should be on colchicine, but the docs here are afraid it will do her more harm than good.  She has been on prednisone so many times and every antibiotic possible with no improvement.  It is frusterating.

I am moving my family to Boston next summer.  My plan will be to get Tasie set up at the NIH and finally find out what is going on.  She has no quality of life and that is not right nor fair to a little girl who just turned 9 today.  

And tomorrow I get to start fighting with the school system again to get her schooling taken care of for next year.  

Talk to you all soon.

[MommytoGracyn]

I thought that we were the only peoplegoing through this.  My daughter is 23 months old and has been having high fevers since she was 1 year old.  They occur every month usually around the third week lasting 1 week.  Her temp has gotten as high as 106.4.  We have seen an infectious disease doctor who said everything was fine and she was a normal kid. That was two weeks ago.  She just had a seizure on Monday when her temp was 103. Her white count was elevated as always, sed rate is always a liitle elevated along with CRP.  No source for the fever is ever found.  Occasionally she will have a runny nose and cough.  We are going to see a neurologist tomorrow regarding her seizures, but I am at wit's end.   The doctors always think you are over reacting. Does anyone have any suggestions as to where to go next?

[imaginemelissa04]

I agree that although I hate to hear of another child suffering from these problems, it is comforting to know that you are not alone. I have felt so alone for years. People I have worked with act as though I must be making all of this up or crazy. I have lost jobs over being out a lot, and every year it is a new battle with school to get adjustments made for Julian. He does very well academically, but struggles with gym, art, any class that must use his fine motor skills. I remember when he was in 1st grade, he scored high on all of his TCAPS and such so they insisted that I have him tested for the gifted program, which I did, only to have him fail to qualify since he could not work the “puzzles” that were timed! He was very upset. I understand those school struggles all too well. We too have spoken with Dr. Kastner and he has found the same mutation in Julian and his father but not my sample. His father is of Italian descent and I am a mix of Irish, Cherokee Indian and Southern girl. They originally suspected Mulengoen heritage, but hasn’t been proven. I still say that I suspect his father’s service in the first Gulf War has a connection. Anyone else on here knows of any other service member or family of that has FMF?
As for her not showing the signs and symptoms of FMF, I agree with you, who knows exactly what those are? When Julian has an attack, his “specialists” defer to me with, Mom is this an FMF attack or something else? I know what I know from years of dealing with it, but I am not a doctor. We currently don’t have a doctor who even has one other FMF case, only us. From what I read, she DOES show signs and symptoms of the true FMF and would probably benefit from colchicine greatly. It really made a huge improvement in Julian for several years. And so far, we haven’t seen any harmful issues with usage. He has been on it since age 4.  I would think the chronic use of Prednisone is the greater risk factor. I know for us, it has severely delayed Julian’s onset of puberty. He is 15 and no signs yet. They just informed us thru the pediatric endocrinologist that he will have to have Testosterone injections beginning over the summer. I can’t wait for those outbursts! But I do feel sympathetic for his case, it doesn’t help that his younger 12 yr old brother is full blown with his puberty, even growing a mustache. That has to hurt feelings. I would love to talk to the young man in Greece who has this too. Lucky for him that his parents are so knowledgeable in this area.  Has he been checked for Amyloid?
Best of luck with your move to Boston and the NIH I hope it goes well for you. I agree that she should not have to suffer like this. And you as her mom are the only one who will fight for her, so keep that up! If I can help you in anyway, I would be glad to. We have to stick together and be heard, this disease is too often shoved under the rugs or dismissed due to the small amount of people who have it, but one is too many to suffer like this. I often wonder if some “celebrity’s child” had FMF, how much attention would it get then?
Also we hope her birthday is a good one. Keep in touch.
Melissa

[jo737]

I just got back from the Immunologist with my daughter. He is going to run a series of test during fever and after. She did not get her fever yet this month but i know its coming she woke up this morning with a sore gland. Temp at Drs office was 98.8. When we got home it was 99.7 She has on and off complaints of eye and head pain.She has not complained of any knee pain yet and that is usually the first onset to know  her fever is coming , but then again this whole month almost everyday she has been getting sharp headaches on and off.. The tests he is going to take is. CBC (with auto diff,PLT.) Strep screen .Ferritine (IL/TNF) CRP, ESR, SerumAmbloyid A protien, ASO titers, IgA, IgD, IgF,IgG.                                                                                                                                                                                                                                                        

[jo737]

Dr. Krishnaswanmy Allergy and Immunology from ETSU is who we are seeing now. Today was are second time of seeing him, and both times of being there he has listened to what I had to say and seems interested on what is going on with her. She has also been to DR. Jones but she has no allergies.                                                                                                                                                                                                                                                     To ImagineMellisa04 Brianne had her FMF test done through blood work. She never had any biopsys done.

[imaginemelissa04]

About Brianne's testing, when Julian was diagnosed with FMF, ours was done by skin biopsy and we saw a genetic specialist for this. I am not aware of a blood test for this, but it has been many years for our original diagnosis. I still think it sounds a lot like FMF with what you describe to me. And I am glad that she will be tested during the next episode. Julian was, my only regret was that I let them stick him for blood samples over and over instead of insisting on a cath. so they could get blood each time with no sticks. He was around 3 yrs old and in the Johnson City Med Center, and honestly I was just so relieved that someone was listening to us and believing what we told them that I let them kind of experiment. We had no idea and they were observing him and taking blood every hour or two during this 2 day cycle to see where his levels were during and after different parts of the attack. So if they do have to draw blood maybe you can get them to put a cath. in so she only has to be stuck once. It still makes me feel bad that one of his first words was "butterfly shots". Keep me posted and good luck!

[jo737]

My daughters fever started last night so i took her in today for bloodwork and  for the Doctor to see her. He ordered more tests and i have to go back tomorrow to get the rest of the blood work done. ESR/Sed. Rate,Westergren.Interleukin-6 and-1., lumornesois, Fricyoc Alpha. So in a few weeks some of these test should come back .

[Tasies_mom]

Good luck with the tests.  I hope for you and your daughter they can show something so she can finally get some treatment.

My thoughts are with you!

[jo737]

How did they do your daughters FMF test was it through biopsy or blood work?

[Tasies_mom]

It was done through blood work about 5 years ago.

[imaginemelissa04]

I am interested in opinions of rheumatologists, as we are looking for a new one. I would like to find a local one a little closer to home to stop the Vanderbilt trips. Right now Julian is pretty stable and I would consider a regular one too, not just a pediatric. Our closest ped specialist is in Knoxville. It is just so hard to fit all of the visits to all of the specialists in and work full time as well as being a single mom.. any thoughts? We live in the Kingsport area, but can travel somewhat.
Thanks

[publichealthmom]

Hi.  It's midnight here and I found this thread after putting my 6 yr old back to bed after yet another episode of fever, leg and abdominal pain . . .

According to my late-night Internet research, in addition to FMF and HIDS (hyper-IgD), periodic fever syndromes also  include:  TNF receptor–associated periodic syndrome (or Familial Hibernian Fever--first described in Irish and Scottish families), "Muckle-Wells syndrome (with urticaria, arthralgia, deafness [auditory symptoms were described above], and . . .  renal amyloidosis); familial cold autoinflammatory syndrome (with rash, arthralgia, and conjunctivitis triggered by cold ambient temperatures); and PFAPA (with aphthous stomatitis, pharyngitis [sore throats were also reported, I believe], and cervical adenitis)."

Just some more things to think about, mention to the doctor, Google . . .

THANK YOU for sharing your experiences.  I've been uncomfortable for quite a while in trying to dismiss this as "growing pains."

[jo737]

Did you look into the JohnsonCity Hospital or the Etsu across the street from them. They also have the St. Judes in the Johnson City Hospital , you think they would have to have a Rheumotologist, other than that i havent been any further that way for DRs. I have only been to Childrens in Knoxville for Infectious Disease and Rheumotologist. Were about in the middle for both hospitals.

[jo737]

Well after 8yrs of searching for I finally got an answer today from the doctor. He said most of her tests came in and hes pretty sure she has PFAPA syndrome (periodic fever apthous stomatis pharyngitis adonitis) I will know more next week what he will do for her. Predesone? Tonsils out? He said they could grow out of it 13-17yrs old. Even though I dont know the outcome on what will happen its nice to put a name behind her fevers. I just think doctors need to start recognizing these kinds of fevers are children are getting and stop giving them tons of antibiotcs which never helped. Theirs alot of doctors out there that do not want to recognize these fevers Let these doctors.come over every month when the kids are having a fever episode and their crying of headaches,pain and we have to carry them around the house because they cant even hardly walk because their so weak.O.K  I think im done venting.

[imaginemelissa04]

I am glad you have a diagnosis, and I agree it is a HUGE relief just to have an official diagnosis. And also about the Dr's I agree too. I am afraid that until some big celebrity or some other public persons kid has this problem to bring awareness by money influencing it, we will have to keep pressing on for our kids without the doctors understanding. I too have carried my now 6ft tall over 200lb "boy" up stairs at our house after he has been sooo sick he cant walk, and i cant even count the number of antibiotics they just threw at me to make me go away. At first I accepted ANY opinion of ANY doctor, after all they are doctors, but I never truly believed they were right and they werent. I wish we could bring more awareness to the issues our kids have and these little know "rare" disorders that we must always defend and explain to anyone who comes in contact with our children like healthcare professionals, school officials and such. It would be nice to say my son has FMF and someone would ACATUALLY know what that means........
Good luck with your final results next week and keep me posted. What besides prednisone would be a treatment? Or do they even have any?

[Tasies_mom]

I took Tasie to the doc on Friday for a recheck and to discuss her ongoing leg pains.  He pediatrician has diagnosed her with a metabolic disorder now.  Nothing specific yet.  Need to do more tests and talk with her other specialists to narrow it down.  He said she is extremely deficient in Vitamin D (no correctable by vitamin supplements) and some of her leg pain is caused by what would feel to us like shin splints.  Ouch, I've had those a few times and they hurt pretty bad.  I can't imagine what she is going through everyday and still continues to go on.  We have some super kids!

Just wanted to give you all an update.  As I find out more and we get down to the testing I'll let you know what is going on.

Best to you all!

[Momoftwins3]

My son is 7 and started having leg pain that would radiat to his stomach. The Dr said it could be like a headache. I don't buy this as he screams in pain and can barely function. I'm currently having to keep a 3 month diary and allready has had one episode with a slight fever.

[Momoftwins3]

Sorry all I was on my IPod and posted the last comment, I wanted to be more clear of his symptoms as I have been to the Dr and feel brushed off. It started a year ago and he is very clear when it starts and finished...he is a lot of pain and in tears ( to the point of sobbing). At first I though growing pains as you all did but he has an ID twin brother and he is a slight bit taller than him, so I'm ruling that out. I don't know what to tell the Dr as it comes and goes before the day is done and it's like a mysterious thing I'm trying to convince her of...I'm so glad I found this forum and will keep the log for three months and keep watching.

[jo737]

. Imaginemellisa04 had a good point of video taping your child during these episodes, that way the doctor can see it for herself. I kept logs for over 6yrs on my daughter , brought them to every appt. some would look at them some wouldnt, but still log so you also notice any changes from month to month.Good Luck.

[Momoftwins3]

Well so far in the short 3 month trial Hunter has had two episodes of leg pain. I just don't buy this headache thing. We went to the water slides for a day and he complained for the next two days that his legs hurt and then after a B-Day party that involved a big excursion he came home and slept for two hours.. totally out of character for him.
My gut is telling me something is NOT RIGHT and I will make an appt in Sept again as we are out of country starting tomorrow . I'll post soon as I have word as to what my poor gaffer has. Thanks all for reading and it's so nice to know I have know others in the same boat.

[gremlinmommy]

Hello, I thought I was the only mom out there dealing with this.  My son is six years old and is perfectly healthy and normal 99% of the time.  However, starting around Christmas of 2007, he started to have "attacks".  Extreme debilitating leg cramping/pain, fevers, headaches and his lymphnodes would get very large (in fact he has multiple lymphnodes that stay visible all the time).  The "attacks" happened about every two to three weeks, and the fevers would get progressively higher.  First one at 99 -100, second 100-101, third 101-102, etc. until we hit above the 104 mark and I got very scared.  I took him and we went through about 3 months of every test I thought was out there, from x-rays to blood tests to urine tests.  His white blood count was off the chart and we kept getting referred to other pediatricians.  Needless to say, it broke my heart that my little guy knew exactly what a CBC is and started crying when he heard it had to be done.  

I was told to prepare for the worst, a possible diagnosis of cancer.  Like I said this went on for about 3 months, then all of a sudden his blood levels returned to normal and the leg pains stopped.  I thought we were finally in the clear, and obviously with no more symptoms the doctors shrugged it off as just one of those things.  Well, this past week I had the strongest case of dejavu.  My son woke me up in the middle of the night with extreme leg pain and his temp was hovering between 99 and 100 again.  I am so scared that in two to three weeks we are going to have another "attack".  

I know that my son's occurrences aren't as frequent as everyone else's here, but I have to tell you that everything you are saying sounds exactly like what we have gone through, and I'm afraid we will go through again.  I too have had to deal with those around me thinking I am insane, or just making things worse than they are....my son's father (and my exhusband) thinks nothing of these episodes. Lucky for me, our current doctor does seem to think something is going on, she just has no idea what it could be.  

Thank-you for listening to me tell my story and thank-you for telling yours.  If anyone has gotten any positive diagnosis since the last postings please fill me in, so I know where to start looking.  

[imaginemelissa04]

I am sorry to hear about your son, but I agree that it sounds like this mysterious "FMF" or related auto immune disorder. They are all so closely related. I too was so sad to know that my little boy would say "no butterfly shots today mommy", thats what he called getting blood drawn. And even now at 16, he still hates it, but can tolerate it at least. And I completely understand the feelings you are having, feeling like you are crazy, but all the while knowing deep in your gut that you are not! I have an ex-husband that didnt believe either, thought I was an over worried mom and that I should just trust the Dr's., I just knew in my heart that they were wrong and I am so thankful I didnt believe them, they said my son was terminal at age 4, and they were wrong! When you say his white blood cell count was off, how high was it? What about his SED rate? Did they look at ANA? Does he ever have stomach/chest pain? Ever throw up and feel better after? DO his attacks last about 2-3 days? What kind of specialist have you seen? Tell me more, I really wanna help, I know when I was going thru this with Jules, I felt so alone. Hope all is well for you both, let me know and I will help anyway I can.
Melissa(jules mom)

[gremlinmommy]

Hi melissa, we finally went to a pediatric infectious disease doctor at the very tail end of last years episode.  So tail end that he was the doctor who said everything was back in normal range, and shrugged it off as one of those things.  Trust me if Peyton has another attack, he is going in and I will not let them say oh well.  I don't want to put him through unneccessary testing, but something is definitely wrong here.  A little kid should not have unexplained fevers and leg pains.  

To the stomach pain, yes.  He will say his stomach hurts, and when he is having a really bad fever attack then he will throw up.  But he says it hurts far more than he actually vomits.  And he only has stomach pains during the attacks.  

His headaches come and go, but seem to be always about 12-36 hours before the leg pain.  It is actually the leg pain that makes me take his temperature.  He acts so normal other than those few things, that you would just assume they are growing pains, like I did when he first started having them.  

During the attacks he doesn't gain weight, and last year actually lost weight.  Also, for the week surrounding the 24-72 hour attack he turns into Uncle Fester, extremely pale and dark circles around his eyes.  The attacks get longer the higher the fever becomes, so the first one will be about 24 hours, and then 48 and then 72 and so forth.  

We recently moved, and I am still unpacking all the documents we have, and I haven't found the charts from last year, so I will have to get back to you on what his blood tests actually said.  I can tell you that the numbers were identical to my uncle's who was diagnosed with non-hodgkins lymphoma not too long ago.  And when I say identical, I mean identical. That's one of the reasons I was so scared before.  I am so glad I found you ladies, and that I am not just overreacting.  Thankyou.

[imaginemelissa04]

I know what you mean about the comparison to non hodgkins lymphoma, Jules too, I have a brother who had it before Jules and I agreed they were a match. Jules was misdiagnosed at least two different times. They first said a really rare form of a pediatric leukemia and it was advanced beyond treatment, then they later said scleraderma, they were wrong on both counts. Jules also had severe stomach pains and often referred to them as his heart/chest burning, which first we were told was just reflux disease. He would cry and scream in pain then get a little period of relief immediately after he threw up. Then a few minutes to hour or so later it would start all over pain crying...pain...screaming...running to the bathroom and throwing up. When I say that we made an exact tape of an episode, we did just that from start to finish, filmed every part, the tempature being taken, what the thermometer read, even followed him to the bathroom to get all of it! Our pediatric rheumatologist here had our faces edited out and presented our video at a conference on this subject several years ago. Maybe you could try making a video of your son. Lets face it, when they are at their sickest moments, the doctors/specialists are no where around! I think your sons illness sounds so much like Julian's. I will get all of his older records out too and look at levels. I know during this time his SED rate was always higher than 50, which is an indicator of chronic inflammation, but not specifically any disorder. They still go back and forth with his Lupus diagnosis, hesitant to hang that diagnosis on him for life. I think he may have it as my mother had both forms and suffered for years herself before she was diagnosed. Just hang in there and stay strong, a mom knows her child better than any doctor ever will! I have also found that for me personally, I have a better understanding/working relationship with female physicians, they just get it! Keep me posted. Hope he is doing okay now...Jules just got over strep and walking pneumonia at same time, so I know what will probably come next is an attack of his FMF..... I am preparing for it.
Melissa

[Starwishes]

My soon to be 4 year old daughter has had daily fevers for 4 and a half weeks now.  Temps vary from 99 to 103.5. On the onset of the disease she had rashes that would come and go and be more intense with fever (I would call them red not salmon), right now they are almost gone.  She complaints about leg and feet pain which seemed to have gotten progressively worse - she has not walked properly for the past two weeks. SED rate and CRP are both very high. She is very anemic with iron levels dropping over the period. She was hospitalized for almost 3 weeks where she got treatment for Rocky Mountain Spotted Fever and Kawasaki disease which were both ruled out after treatment. Diskitis is out as well thru an MRI, bone marrow was normal.
Her pediatrician thinks she has some kind of Juvenile Arthritis but two Rheumatologists (one from Wake Forest the other from Duke) do not think that's what she has. In the meantime the fever keeps going and unless she takes ibuprofen she will just lay in bed moaning and complaining.  Even with the medicine she still does not walk. We are ready for the disease to either go away to never come back (best case) or for a doctor to give us a diagnosis and a treatment that makes our little star better.  I know this is all very generic but is there anyone in this community with clues to our puzzle?
We appreciate any suggestions at this point

[yonn]

glad to get to this site and thanks all for sharing your experience.

our 5 yr old son has been a normal healthy boy until now (occassional ear infections, cold/ flu...). About two weeks ago, after playing outside in water, he suddently started complainig of headache (1st time ever) follwoed by high fever thuout the nite. By mornig started complaining of pain in one eye too plus headache and was avoiding light. The pediatrician suspected strep infwection and gave him antibiotics. For two more days pain & fever persisted unless controlled by ibuprofin. The eye got a samll sweliing on the upper lid but no other symptoms (no redness, no discharge...). Several doctors looked at him and concluded there's no problem with his eye - no one could figure out his fever and headache. The Step test came back negative but told to finish the antibiotic. Now, two week lalter, again suddent onset of fever and headache(4 days now). Headache & fever returns unless controlled by ibuprofin) - every 4 - 6 hours. 5 doctors couldn't figue out why. On ist day was complainig of leg pain too (on his sheen).

very scared

[Sunshine893]

Have any of you tested your kids for Celiac Disease.  Celiac has varied symptoms.  My daughter has celiac and is now gluten free.   She is a new kid.

[Blessedw7]

Hello,
I just found this through a google search. My 4 yr old is having a fever and leg pain. The leg pain seems to be pretty severe he is not active but lays on the couch and cries whenever he walks. I took him to my chiropractor and he did an x-ray and adjusted him but couldn't really find anything. I am just wondering if any of you have heard of Reliv. I am not a salesperson but I took it for 6 years and it truly changed my life. Expensive? Yes! But not compared to years of doctor visits and having a poor quality of life. I plan on getting back on it. I heard so many stories and saw children come out of terrible things, even cancers. I just wanted to throw out a natural option. If you are interested find someone who sells it.
I pray that this all will draw us ever closer to the Lord. Knowing that each day with our precious children is really a gift that we don't deserve. Let's not waste one day!

[Jackys]

My son has had recurrent fevers, headaches, leg pain and spots on his eyes since he was about 10 months.  He's now 7 and they have not gotten better except that they do not last as long.  I do know that I had the same thing as a child except for the spots on his eyes and it went away once I stopped growing.  He is very active and my sister is a massage therapist who had reccomended regular massages for him and increasing his fluids to help get rid of the extra Lactic Acid that might be causing the pain.  Since I went through it as a child it is increased with excersize and my son is very active.  I don't know if there is an actual cause for it but, anything that might help.  Stomach pain isn't associated with what my son has but, it seems most of you have daughters.  My sister had the same thing and they were bladder infections from taking baths with bubble bath.  Once my mother started giving her showers they stopped.  Hopefully this will help some of you.  There has to be a reason for this for so many children to have it.  I thought we were alone for the last 7 years in this.

[Trish4130]

I was looking on the internet for reasons for why my 2yr old son keeps saying his feet hurt and he wants to be picked up.  One night he did this, and the next day he came down with a high fever (103.7), I didn't really think there was any connection, until coming across this site and come to think of it, it does seem that there is some sort of pattern to his fevers, just about once a month or so he seems to come down with something, the fever part of it usually last one day and the rest of it lasts about two more days and although he seems to get better he never really seems to fully get better before this whole thing happens all over again.  I do think that keeping track of when he gets the fevers and complains about his feet is a great idea,       unfortunately I didn't think of doing it, due to the fact that you know something is wrong with your baby (I mean your only around them ALL of the time), so you take them to the doctor, just to be told, "oh, there is nothing to be worried about, kids are sick all the time, they need to build up their immunities" (bla bla bla) they send you home... so it seems like you are the one overreacting.  They sent me home one time, and by midnight my son had a 104.5 temp, I took him through emergency was there till 7am to find out he had pneumonia.  I am sorry to say I should have thought of tracking it awhile ago, but I am great-full to come across this page to know I am not alone.  It is extremely frustrating dealing with these kind of issue's, and for some reason it seems like most of the doctors that I have dealt with seem to have their head up their butt!!  For me, I am not sure where to go with this, I have very little faith in even taking my son to the dr, majority of the time I am VERY disappointed with the experience.  I did find a good pediatrician, I seen him twice and on the second visit I found out that he was leaving the office.  So where do you even begin to find a good one?  Anyways, I know this is going to seem way off track but I was wondering if any of you have seen Jesse Ventura's "Conspiracy Theory"?  There is one episode, called Secret Societies ( ep 5 ), well if you haven't seen it, you should!!! http://quicksilverscreen.com/watch?video=157484
The link should take you to the episode.  If not it was a series that played on TRU tv, Wednesday nights at 10pm.  It talks about a group of  people that run the world called The Bilderbergs, and how they are slowly killing off the population, by poisoning medicine, the food we eat, especially baby food, with aspartame (sorry, not sure of spelling); they talk about other things to.  I know it might sound crazy but I was surprised when I seen it.  Really, if you can, watch it!!!  

[MrsMama]

I so appreciate reading others' experiences.  My 3.5 year old son has been experiencing similar symptoms for two months now, and I go from being sick with worry to relieved and hopeful that it was a fluke and is gone for good... but with ongoing recurrences, I am losing hope that it is going to disappear.

He has had a fever of 101-104 for between one and five days at a stretch, accompanied and sometimes followed by bad stomach ache, pain in his legs, feet, arms and hands.  He gets better for a few days or even recently for 2 weeks, and then it returns.  No one else in our family has caught any of his symptoms since this began 2 months ago.

His SED rate and C-reactive protein level are very elevated, and he had a small amount of protein in his urine during one episode (then normal after that episode was over). Our ped referred us to a gastroentrologist, and we are just beginning to get results back.  He tested negative for Celiac.  We are doing numerous stool samples to look into Crohn's, giardia, and others.  

None of this really accounts for the pain in his limbs... which has been less intense recently but most heartbreaking (Mama, my legs and hands don't work!  Please carry me to the potty!)

If gremlinmommy is still visiting this site, I would really like to know what you've learned by now... My son shares your son's symptoms -- including feeling better after vomiting, pale with dark circles under his eyes.  He also complains of eye pain a lot with his fevers, and since one eye became red and puffy, I had him checked by an opthamologist who found nothing.

Other odd things we've assumed were not connected but I'm grasping at straws: He has a strange raised skin-colored bump (sort of like a pimple that never goes away) on his cheek, which developed a few months before these recurrent fevers came; it keeps changing, from white to red, to neutral again.  He had his first ever vaccination (for H1N1) one week before the first episode.  Only one ear turns red suddenly like it is being dipped in paint from time to time -- never noticed it until after the fevers started.  

He is perfectly healthy, happy and normal in between.  But during the episodes he is miserable, moaning, crying, motionless, unable to eat.

I am grateful to have some leads on other possible diagnoses.  Thanks for sharing your experiences, and good luck to everyone during this difficult time.

[sweetcakes0341]

Sorry about your situation with your daughter.  Maybe an oncologist would be a GREAT idea.  I read the majority of your posts and sounds like you are having a rough and frustrating time.  If you take her to an oncologist and have a CBC done, ask them to check her reticulocyte count.  Mention Type 2 allergic reactions and autoimmune disorders that are uncommon.  If you are givng her NSAIDS like ibuprofen/motrin and they are helping, then you may want to ask the doctor for Rx corticosteriods as her body may be 'attacking itself' = autoimmune disorder.  A Rx corticosteroid such as prednisone will help to reduce inflammation, erythema (redness) and fever.  This is done by blocking prostaglandin synthesis,  Prostaglandins are produced by white blood cells (high White Blood Cell count?) such as macrophages.  By using medications such as tylenol and motrin, that is what you are doing....blocking prostaglandin synthesis which prevents fever, inflammation, etc.  A drug such as Prednisone is considered an immunosuppresant which helps for Type 4 allergic reactions (slow acting latex allergies) and autoimmune disorders (which can be provoked by Type 2 allergic reactions).  I am no pro, but I hope this helps or at least sparks some new ideas in your Drs head.  I am very sorry and hope things get better for your daughter and your family.

[mothersinstinct]

My daughter who is 11 years old came down with recurrent infections with fevers and pain throughout her entire body.  She tested negative to all scans and bloodwork was strange, but she tested positive for Mycoplasma bacteria which usually only causes walking pneumonia, but if it goes further than the pleural cavity it can do some strange things.  Have your children checked for mycoplasma IgG and IgA, if the IgA is positive you may have your culprit.  This bacteria is also linked to the Gulf War Syndrome and is contagious to others.  It can cause Chronic Fatigue Syndrome, recurrent infections, neurological problems, and Fibromyalgia and more.  My daughter has Fibromyalgia, neuro problems, recurrent infections, and Pain Amplified Syndrome.  She has began 28 days of Biaxin with PT, and has shown great improvement.  To find out more about Mycoplasma, look online at Mycoplasma, Stealth Pathogens.

[imaginemelissa04]

I agree that a gulfwar connection may exsist and I did explore that in the beginning of our search. Julians dad served in Desert Storm, and at the time Jules was diagnosed he was one of only a very few children in the US who actually had this illness and they all had a Gulf War connection. His father has been diagnosed with Gulf War Syndrome. As far as the IgG and IgA you mentioned, Julian has been tested for those. I am glad the Biaxin is working for you. I hope that continues to work, for us, long term antibiotic therapy was not the answer. Hope your child continues to improve, perhaps there is more to this Gulf War connection than they would like us all to believe......

[aamc]

I'm a 24 year old male living in the UK and i stumbled across this site looking for information about my condition which i have had since i was very young, 2 years old maybe???? it seems that some of the posts on this site seem quite similar to my condition. I have been diogonsed with TRAP syndrome (similar too mediterranean fever) along with my sister and mother. It affects us all in differnent ways, personnaly i get flare ups of the condition about once every year now. this consists of a odd looking circular rash, fevers of up to 104, a swolen eye and only ever one of them strangely and aches across my sholders. My sister (20) has always had it worse than me and her aches almost arthritis like are normaly in her legs or hands. when she was younger she was in a wheel chair as she could not walk due to the pain. as for stomach pain i cant say we really have experienced this but our docter has said that every individual case will be different. as for treating it we started on ibroprofen and paracentamol to take away the inflamation (inflammation) and pain respectfuly. as we got older we then strared on voltarol. my sister then started to take prednisolone when ever the flare ups happened but not really for a long term usage. i on the other hand now take diclofenac tablets whenever it comes around and it seems to sort it out in a day or two compared to a 2 week epiosode when i was younger and only using ibroprfen. i find i can bring the flare ups on (not that i want to) with too much partying and not enough rest or if i do to much weights at the gym. i hope this information might help some one as i konw my parents found it very stressfull when they was trying to get answers and the docs thought they was crazy.

[chelseasekely]

I am so glad I found this site! My 6yr old has beeen having leg pain, fever, eye pain, and stomach aches! I thought maby the leg pain was nothing but now I am not so sure! He's got a fever of 103.0 right now and doesnt want to do much. Going to the doc on the 21st. Any ideas welcome!

[saz919]

My son is 5 years old and has been having recurrent fevers for 9 months, he complains of headache, eye pain, leg pain and will not eat and drink whilst he is sick!  They return every 2 weeks and last for 2/3 days, we have travelled alot and he has just spent nearly 2 weeks in hospital for investigations but nothing has been found, we are awaitng blood cultures back now??????
These cases all seem very similar!!!
Anyone managed to get a diagnosis?

[imaginemelissa04]

Sorry to hear about your son, I know how scary that can be. My son is now 17 1/2 but his started around age 2 and it was a long tough road to get him diagnosed. Are you in the US or where? What all have they "ruled out" thru testing? Have you heard of the Periodic Fever illnesses or Familial Mediterranean Fever? These have symptoms like you are describing. I know with my son his body aches and pains were vaired at times, which I now understand depends on which part of his body was being "attacked". What are they waiting for on the blood cultures? What are the SED rates, ANA, etc.......
Hope to hear from you soon.
Melissa *Julians mom

[LilEann]

I dont have a child suffering from this condition, but I am aware of two children, one aged 5 and the other 8, from two differents states in Australia both complaining of sore legs and having fevers, and both passing away this week. One passed away in hospital, and the other passed away during the night and was found in the morning by his parents. So sad! There has to be some explanation for this occurance. I find it extremely odd. Has anyone found answers yet?

[sammiesmommy]

My daughter is almost 4 and is dealing with the same thing. She wakes with a fever and complains that her somach, head and legs hurt. This usually last 2 days and then like clockwork, on the 3 or 4th day, she starts the cough (barking seal like cough) then she gets congested and wil go away in a week or so. This month it never fully went away and thenit just started the cycle all over again. So frustrating. I have mentioned it to her dr when it first began but he didn't think there was any signifigance to it. I began to write everything on a calendar and when we go for her 4 yr check up in October, I am going to ask that he begin testing. Please update if any of you get a diagnosis and I will do the same. I hate seeing all these kids in pain.

[Lafa]

I can t believe I found this! My 8 year old son is going through the same thing. We have been keeping a log since december of 09 even though this has been going on alot longer. He has missed so much school. He is sick almost ever 3 weeks. He has stomach pain and fevers and leg pain! His father wont let the doctors run test's on him due to high insurance cost's. I stay up many a nights not knowing what is wrong with my son. Right now at this moment he is laying on the couch lifeless and vomiting about once a hour. His teacher has commented that he is going to have to be held back due to the amount of school he misses every month. I am very interested in all of your test results so I will be watching! I hope all goes well with your children as well as mine!

[sirindajayne]

I have complete sympathy with you, my son almost 3 has exactly the same systems,reoccuring fevers, back pain, leg pain and event arm and foot pain for over 4 months. He is very pales, has shown to be borderline anemic,but not anymore,however latest FBC revealed elevated ESR and platlets.  We've been referred to a haemotologist a the childrens hospital next week, really worried.  Did you manage to get a diagnosis for your son? is he any better or is this still going on?  I am of course thinking the worse, however latest blood results don't show any indications of Leukemia, so that's something.

[byhisgrace21]

My son has had reoccuring fevers, leg pains, headaches and nausea & lethargy for nearly seven years now. He will be eight June. I found this site once before when we were seeing a hosts of specialists at UW Milw. He saw an epidemialogist,  rheumatologist and a gastrointernalogist. He had so much blood work, some genetic testing for trapps etc (which he came up negative) and he had a colonoscopy. We saw these specialists for about six months and not one of them were able to ascertain why our son was having these reoccuring symptoms. Now when ever we see someone new i try real hard to explain we need an advocate, someone who will look at the spectrum of symptoms and help us figure out what is going on and how can we get him better. The past year we have spent seeking the attn of chiropractors who specialize in nutritional therapy, adjustment Cranial Sachral therapy etc. We have had limited success. We will have months of reprieve which is awesome, but here we are again Eight weeks into our son getting sick every two weeks again. You would think because this is cyclical in nature it would actually be a major tip off... here is what i know from the work in the past year: My son has gut issues which apparently were aggravated or perhaps even caused by eating WHEAT (not gluten in our case - no allergy to gluten) RICE, CORN, basically any thing packaged...he takes upwards of 20-25 vitamins a day to help with his digestion and rebuild his stomach lining. He is nutritionally deficient in most minerals. Some believe it was the vaccinations two many too early...
We are trying a someone new very soon. I will keep you posted. I also wanted to share we homeschool, which has made all the difference I believe. In spite of this journey is he taking, he remains confident, witty and loves learning!! Our down days are spent with tons of books and cuddle time. Our up days are spent doing what's expected of any 2nd grader. We have lots of friends and social interaction thanks to co-ops, church and karate. We are swimming in medical bills but the Lord provides and karate has been so good for him!! I will pray for us all when I pray for my son. The Lord gives us trials to stretch us and draw us closer to him. He cast all our fears and worries on him - take him literally and take everything to him in prayer.

[jellybeanmom416]

Have any of you looked into kidney issues? I was explaining my son's symptoms to a colleage today (frequent fever, stomach pain, red eyes, sometimes diarrhea) that he has been getting for a couple of years, especially when he is run down or has spent too much time playing outside in cold weather. Last year when it was really bad they thought it was appendicitis, then decided on an adenovirus, but it recurs every month or two. My colleague had the exact same symptoms for 12 years as a child and they finally discovered she had a malformed kidney since birth that was getting progressively worse. Once they removed it she was fine.

[blueyes53]

my nephew had fever on and off for months and starting getting leg pain. they though it was juevenile rheumotoid arthritis.  But, his esr level was elevated. after all the runs to the hospital we demanded a bone marrow test.  The news was not good.  he had leukemia.  look up the symptoms for leukemia.  this poor child lost his appetite, wouldnt stand often because of his leg pain.  He is now having chemo for the next three years. but when children this age get it, they almost always go into remission and never get it again. so dont think it is a death sentence, just be aware it could be this.  we went to weschester children's hospital and it is the most professional people there that come from st. judes children hospital , NYU , columbia university.  The staff and nurses cant do enough for you and you become a family with strong support.  good luck honey. my prayers are with you and your child. dont be in denial, just insist on this test, first an esr blood test take it from there if it is elevated.

[coolretrogal]

Well, add me to the list of mom's with a child that has a "mystery" ailment.  My daughter is now 11 (almost 12), and has all the same stuff as most of your children.  She has had these "flare ups" since she was 12 months old--about once a year consistently.  She will get a high grade temp.--it goes to just above 105, then peters out after a day or two.  In between these episodes she has gotten a bout of a SEVERE headache, in between those, a severe stomache.  Today she is just getting through the fever episode again, and has leg aches.  I have taken her to the ER tooooo many times, and she has been tested with so many things, just to have another dr. negate the last diagnosis.  Anymore, I don't even take her in.  We monitor the temp., rotate Motrin and Tylenol, then voila`--she's fine again.  She is very energetic, and does have high functioning autism (Asperger's Syndrome), and psoriasis (which thankfully finally diagnosed SOME of the rashes).  One time the dr. was so perplexed by her rash (which was oddly belo the surface of her skin), that he took a picture to pass round to fellow drs.  Are these problems connected?  No clue.  Will I ever get a diagnosis?  Ummmm...probably not--but I do know I am no longer going to go through any more rounds of antibiotics, because if this is an autoimmume problem, they are not helping and perhaps hindering my daughters immune system.  I am SO thrilled to see you mothers sharing your experiences--we have a common goal here--to help our children--God bless!!  ^__^

[letter1133]

My son is 4 and he has high fevers (39.5*C) for 1 week or so every 1-2 months and worse in winter. He does not look that sick, but I can not bring him to daycare because of fevers and we are waisting money for daycare and having lots of trouble to take time off work because we are both working. He also has large neck lymph nodes and he was exposed to TB-carrier caregiver in daycare for about 6 months. His TB test is negative so it can not be tuberculosis. There is no known diagnosis for these fevers. I used to give him Motrin for fevers, but now I decided that he fights fever byhimself because he is not uncomfortable. He does not behave like 39.5*C just tired and sleepy. He also has severe fish allergy and had eczema and a few croups when he was 2 years old.
I am very frustrated with these fevers and I hope that may be something can be done in the future about this new diagnosis.

[imaginemelissa04]

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!

[imaginemelissa04]

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!

[rejoice900]

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 (inflammation).  It is expensive, but you only use a little every day, and it is not nearly as expensive as the doctor visits and medicines.  

[momoftres]

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.

[lori650]

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.

[lori650]

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

[imaginemelissa04]

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

[Stephpopp]

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.

[Kelnkelsey]

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!!  

[Kelnkelsey]

My daughter as I said is now 17 her adenoids (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!!  

[Shaya18]

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.

[PFAPAmommy]

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?  

[mommahopes]

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??

[PFAPAmommy]

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?

[PFAPAmommy]

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.  

[PFAPAmommy]

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.

[dinostace]

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)

[dinostace]

BTW -there is a simple blood test that tests for the antibodies to determine celiac disease or intolerance.

[java99]

I just found this sight. what was the outcome of your son?

[denandliza]

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

[imaginemelissa04]

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!

[PFAPAmommy]

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 :-)  

[denandliza]

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.

[beks078]

have all your kids been vaccinated? It would be interesting to know if the vaccinations have caused the immmune disorders etc

[health4Des]

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!   :)      

[health4Des]

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?  

[twinsmummy20]

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.

[Ryker8]

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.  

[Slarts]

Annnatto coloring causes my 4 yr olds recurrent fever/migraines, something to check out...

[Wildrrose]

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!

[imaginemelissa04]

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!

[karsch67]

What about cyclical neutropenia? Sounds like it might fit....

[Giveme2steps]

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!

[Mommy4u]

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 [phone] Teri.***@****

[Mommy4u]

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 (ammonia) 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 (chronic) inflamation (inflammation) because your body can not defend its self please look up cronic (chronic) inflammation its causing Obisity world wide arthritis joint pain diabetes pelvic inflamation (inflammation) 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 .

[rian1222]

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?

[rian1222]

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?

[tambilee]

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!!

[fmfat1]

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!  

[Jbishop]

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.

[jeanne37]

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

[imaginemelissa04]

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.