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.
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.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.
Have your kids been checked for lyme disease? Can have fever and joint pain...
Yes she was already checked for lymes diease and it was negative.
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?
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.
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.
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.
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.
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..
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!
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!@
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.
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.
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?
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.
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.
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!
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.
Did your daughter ever get tested for stills disease?
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.
Good luck with the test. Did he have any suggestions or notice anything? We are waiting for a referral to another allergist.
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?
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.