Recurrent, scheduled fever, complains of leg pain

[Garet]

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.