Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 > My son is fourteen and was recently diagnosed with > fibromyalgia. They are also testing him for arthritis in his feet and > pelvis, they are looking for some kind of gene. I've been taking him > from Dr to Dr. for over 5 years which is VERY frustrating so I am > thankful they finally found something. Please let me know if their are > any other children with this on this site or any info would be > appreceated. My 15 yr old daughter hasn't been diagnosed but I've been taking her to the doctor for years now because of joint pain. Her hips and knees are particularly affected and now, since xrays and blood comes back negative, they just shrug it off to patella femora (sp?) and say to let it be. The thing is MY blood and xrays are negative, too, and I have RA. Plus she is always half sick. The same exhaustion, fatigue, etc, that all of us with RA feel. So I worry about her but don't want to push it and so I just watch and wait and hope it goes away. It would break my heart if she had RA... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 , My name is Missy and my daughter, is six now and was dx with Systemic Juvenile Rheumatoid Arthritis when she was two years old. I'm not sure if fibromyalgia is the same thing as RA but with juveniles almost always the tests for RA which include the RF test, ANA, and one I forgot the name of almost always are negative. They did do a CRP which I think means creatinine reactive protein, and the ESR which is the sedementation rate of the blood. They were off the charts with and the rest of her symptoms were: She couldn't move anything at all. Couldn't even hold her sippie cup. Wouldn't eat, drink, etc. Her fever was 101-106.5 under her arm for over 13 days. The fever would go up and down without any regularity and motrin had no effect whatsoever. She had the salmon colored rash that systemic jra kids get and it would move around all over her body mostly on her trunk, neck, and face. Finally when she was at 106.5 under her arm and hallucinating they promised she wouldn't come home from the hospital until they found out what it was. That time they rushed us past like 30 people in the children's hosp waiting room and put us in this room that sealed shut. Drs came in with masks and gloves and I really think they thought she had Ebola or some creapy infectious disease. God that was so scary. I was just freaking out. I can't imagine what you went through for five YEARS!!!!!!! I thought it was HELL just waiting 13 days. Two ERs sent us home with a fever of unknown origin because all the tests came back negative. They tested her for some really funky stuff. They were just baffled. JRA is so rare that it never even occurred to them. They really thought it was histoplasmosis or geomboray syndrom (I think it's a nervous system disorder). Oh, yeah and cat scratch fever. (funny me I thought that was just a song) LOL It must be so frustrating for you to think your daughter may be affected as well. My daughter has been on Methotrexate injections for four years and IV Remicade as well. She was on Prednisone for a year and a half at first, now she's been back on it since January again because she is having a bad flare. Poor thing. Since she's six she's in first grade and don't know if you're familiar with it at all, but prednisone makes your tummy and face really puffy. Last time when she was 3 she nearly DOUBLED her weight in two months. She's on less this time, but she's only six and has gone from a skinny! 47 lbs to 58 lbs in three months. That 11 lbs is a lot for a six year old. Poor thing wants to wear her favorite clothes and nothing fits. Even her little Easter dress I got her won't fit. She was heartbroken so we went and bought her a new one (with a pretty hat) so she's okay with it. She's still wearing the little sweater that went with the original dress even though it doesn't match. I wouldn't care it it was hot pink I'd let her wear it. lol Wow, I'm rambling, sorry I just hope you can stay strong for your kids, I know you will we all do what we have to do to keep it together for them. It must be hard to see them tired and they are probably wanting to play sports and all. Em was in dance last year, but just can't do it this year. Her 8 yo sister isn't dancing either so it's okay. Em does ask why she has to take this medicine when it just makes her sick and she still has pain anyway. That's hard to explain that she'd be in worse pain than she's in now if she DIDn't take it. She just knows she hates shots. Oh, goodness, it's almost 1:00 so I'll sign off now. If you ever want to talk, just email me. Good Luck! Missy <kyrik@...> wrote: > My son is fourteen and was recently diagnosed with > fibromyalgia. They are also testing him for arthritis in his feet and > pelvis, they are looking for some kind of gene. I've been taking him > from Dr to Dr. for over 5 years which is VERY frustrating so I am > thankful they finally found something. Please let me know if their are > any other children with this on this site or any info would be > appreceated. My 15 yr old daughter hasn't been diagnosed but I've been taking her to the doctor for years now because of joint pain. Her hips and knees are particularly affected and now, since xrays and blood comes back negative, they just shrug it off to patella femora (sp?) and say to let it be. The thing is MY blood and xrays are negative, too, and I have RA. Plus she is always half sick. The same exhaustion, fatigue, etc, that all of us with RA feel. So I worry about her but don't want to push it and so I just watch and wait and hope it goes away. It would break my heart if she had RA... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Hi Everyone I also have a child who hasn't been diagnosed. She is 10 years old and the arthritis started 3 years ago from eating two almonds. Lots of different foods cause flares, right now we are in the middle of a garlic induced flare..sigh :-( Because her arthritis is so obviously food related, I have some control over it by 1. avoidng foods and 2. getting the foods treated at an allergy clinic. This has enabled her to not need to be on any arthritis drugs. We need something for pain relief though in flares though (both from her joints getting knocked, or eating something wrong). She was telling me earlier that she wants to go back to the paediatric rheumatologist, as we need some emergency medicine for flares, nothing we have at home makes any difference. It is extremely frustrating, not having a proper diagnosis. My daughters knees don't swell (well a tiny bit) and I think the lack of swelling is why we can't get a diagnosis. Most flares last under 24 hours (severe ones used to last a week, but all this year have been under 24 hours). So she is luckier than most kids with the condition, but it is still pretty bad. All blood tests always come up negative.. the rheumatologist could feel things wrong with her joints and realised she has extremely limited movement in her joints, but still wouldn't diagnose. Anyway, just wanted to say hi. Donna Australia > > > My son is fourteen and was recently diagnosed with > > fibromyalgia. They are also testing him for arthritis in his feet and > > pelvis, they are looking for some kind of gene. I've been taking him > > from Dr to Dr. for over 5 years which is VERY frustrating so I am > > thankful they finally found something. Please let me know if their are > > any other children with this on this site or any info would be > > appreceated. > > My 15 yr old daughter hasn't been diagnosed but I've been taking her > to the doctor for years now because of joint pain. Her hips and knees > are particularly affected and now, since xrays and blood comes back > negative, they just shrug it off to patella femora (sp?) and say to let > it be. The thing is MY blood and xrays are negative, too, and I have RA. > Plus she is always half sick. The same exhaustion, fatigue, etc, that > all of us with RA feel. So I worry about her but don't want to push it > and so I just watch and wait and hope it goes away. It would break my > heart if she had RA... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Hi Donna. Has your daughter had an MRI to see if there is bone erosion? This site has a lot of information on allergy and food sensitivity: http://www.nal.usda.gov/fnic/etext/000004.html I can imagine how frustrating it is to not know what is going on with your daughter. I hope the doctor can figure it out soon. a On Apr 16, 2006, at 9:24 AM, Donna Dwyer wrote: > Hi Everyone > > I also have a child who hasn't been diagnosed. She is 10 years old > and the arthritis started 3 years ago from eating two almonds. Lots > of different foods cause flares, right now we are in the middle of a > garlic induced flare..sigh :-( > > Because her arthritis is so obviously food related, I have some > control over it by 1. avoidng foods and 2. getting the foods treated > at an allergy clinic. This has enabled her to not need to be on any > arthritis drugs. We need something for pain relief though in flares > though (both from her joints getting knocked, or eating something > wrong). She was telling me earlier that she wants to go back to > the paediatric rheumatologist, as we need some emergency medicine > for flares, nothing we have at home makes any difference. > > It is extremely frustrating, not having a proper diagnosis. My > daughters knees don't swell (well a tiny bit) and I think the lack > of swelling is why we can't get a diagnosis. Most flares last under > 24 hours (severe ones used to last a week, but all this year have > been under 24 hours). So she is luckier than most kids with the > condition, but it is still pretty bad. > > All blood tests always come up negative.. the rheumatologist could > feel things wrong with her joints and realised she has extremely > limited movement in her joints, but still wouldn't diagnose. > > Anyway, just wanted to say hi. > > Donna > Australia > > > > > > > > My son is fourteen and was recently diagnosed with > > > fibromyalgia. They are also testing him for arthritis in his > feet and > > > pelvis, they are looking for some kind of gene. I've been > taking him > > > from Dr to Dr. for over 5 years which is VERY frustrating so I > am > > > thankful they finally found something. Please let me know if > their are > > > any other children with this on this site or any info would be > > > appreceated. > > > > My 15 yr old daughter hasn't been diagnosed but I've been taking > her > > to the doctor for years now because of joint pain. Her hips and > knees > > are particularly affected and now, since xrays and blood comes back > > negative, they just shrug it off to patella femora (sp?) and say > to let > > it be. The thing is MY blood and xrays are negative, too, and I > have RA. > > Plus she is always half sick. The same exhaustion, fatigue, etc, > that > > all of us with RA feel. So I worry about her but don't want to > push it > > and so I just watch and wait and hope it goes away. It would break > my > > heart if she had RA... > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.