Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Hi Amy- My daughter Mollie (11) was diagnosed with poly arthritis in November. She has very similar complaints as your daughter. When she was first diagnosed, the doctor did an ultrasound and you could see the water on her knee. Her bloodwork is all normal. There is no denying that the mornigs are much more difficult. Sometimes she doesn't want to get out of bed! She has complained about her whole leg hurting as well-she also does specify knees and ankles, wrist and back (new symptom). She started out on naproxen and was switched to mobic right away due to stomach complaints. After playing in the snow this winter she had a lot of pain for 5 days and the rheumy noted a significant change in her condition as he had only seen her 2 weeks before. He doubled the mobic. It helped a lot. I also took her to a nail salon and had her try a parafin treatment on her hands and feet. She felt so much relief that the salon ordered me a machine for at home. We keep it running at all times so she can use it as much as she wants. She developed stomach pains a few weeks into the new dose of mobic and my pediatrician encouraged us to switch to a pediatric rheumy who said that the dose of mobic was higher than she would prescribe and switched her to celebrex. It has been about 1 week and it is helping, but not as much as the mobic and no stomach issues. My concern is that the ped rheumy said that the next step will be metholtrexate if necessary as she has already tried 3 NSAIDS. I am not too happy about using this drug even though I see that it really helps when I read these forums. I am now pursuing aqua therapy because I believe any non drug intervention that helps is the best ways to go. I would like to exhaust all of these types of possibilites before moving to the next class of drugs. I hope your daughter feel better soon-it really breaks my heart to read these forums-my daughter is not nearly as ill as so many of these children, but it still is painful to watch her suffer. ________________________________ From: Amy Hendrickson <ahendrickson68@...> Sent: Tue, March 16, 2010 6:30:20 PM Subject: Help - Lucy again  Hi all - I am still dealing with the ongoing struggle of having almost everybody pooh-pooh Lucy's pain. She is only really miserable in the mornings and since that's the time that she is getting ready for school everyone seems to think she is avoiding school. But she likes school. And yesterday she asked me why she couldn't just be like everyone else and not have pain. That doesn't sound like a kid that is making it up to me. Here's the weird thing: When she gets up in the morning she hurts all over. She says that her legs and her arms hurt. If I ask her what part of her leg, she says the whole leg. The doctor has told me that that is not arthritis. (One of the problems with the rheumy is that everytime she sees Lucy it is in the late afternoon (because of the drive) and Lucy is feeling pretty good. Plus, going to Denver with mom for the day is a treat, so she's always in a great mood. I think the rheumy just sees her good mood and discounts her pain.) Anyway, I am wondering if there is something more than jra going on, like possible fibromyalgia. Anyone have any ideas about the leg pain? Amy and Lucy, 8, poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Amy, I disagree with the doctor saying that the pain all over is not arthur. Jaye will tell me the same thing and she is 16 but after the morning stiffness wears off the pain is generally gone Help - Lucy again Hi all - I am still dealing with the ongoing struggle of having almost everybody pooh-pooh Lucy's pain. She is only really miserable in the mornings and since that's the time that she is getting ready for school everyone seems to think she is avoiding school. But she likes school. And yesterday she asked me why she couldn't just be like everyone else and not have pain. That doesn't sound like a kid that is making it up to me. Here's the weird thing: When she gets up in the morning she hurts all over. She says that her legs and her arms hurt. If I ask her what part of her leg, she says the whole leg. The doctor has told me that that is not arthritis. (One of the problems with the rheumy is that everytime she sees Lucy it is in the late afternoon (because of the drive) and Lucy is feeling pretty good. Plus, going to Denver with mom for the day is a treat, so she's always in a great mood. I think the rheumy just sees her good mood and discounts her pain.) Anyway, I am wondering if there is something more than jra going on, like possible fibromyalgia. Anyone have any ideas about the leg pain? Amy and Lucy, 8, poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 , you may not like my words of wisdom, but I do believe it is wisdom. My daughter has had Jra for over ten years. I also co chair a support group of 120 families so I have seen a lot of children with different types of Jra and presentations. Twenty to thirty years ago, your daughter probably would have ended up in a wheelchair and had lots of destruction. She might not have grown to her full height. Her hands and feet might have been deformed. Her chin might have been recessed from major tmj damage. Today that is not the case. An aggressive doctor would not have tried three types of NSAIDs to help her pain. I know you are scared. I know these are powerful drugs. But they work. No amount of PT or OT will stop the destruction. You have to stop the joint destruction. If she is having pain and swelling, then most likely destruction is occuring. You don't want that. No one wants that. I have seen many children go into remission on methotrxate. I, too, was scared of it. But ten years ago, I didn't have any mother to tell me that I needed to put my daughter on it. I am that mother now, telling you that sometimes it is the right thing to do. Don't wait too long with the PT and OT. ( n,21,systemic) Sent fro my iPod On Mar 16, 2010, at 3:54 PM, wendy bey <wlbey@...> wrote: > Hi Amy- > My daughter Mollie (11) was diagnosed with poly arthritis in > November. She has very similar complaints as your daughter. When > she was first diagnosed, the doctor did an ultrasound and you could > see the water on her knee. Her bloodwork is all normal. There is > no denying that the mornigs are much more difficult. Sometimes she > doesn't want to get out of bed! She has complained about her whole > leg hurting as well-she also does specify knees and ankles, wrist > and back (new symptom). She started out on naproxen and was > switched to mobic right away due to stomach complaints. After > playing in the snow this winter she had a lot of pain for 5 days and > the rheumy noted a significant change in her condition as he had > only seen her 2 weeks before. He doubled the mobic. It helped a > lot. I also took her to a nail salon and had her try a parafin > treatment on her hands and feet. She felt so much relief that the > salon ordered me a machine for at > home. We keep it running at all times so she can use it as much as > she wants. > > She developed stomach pains a few weeks into the new dose of mobic > and my pediatrician encouraged us to switch to a pediatric rheumy > who said that the dose of mobic was higher than she would prescribe > and switched her to celebrex. It has been about 1 week and it is > helping, but not as much as the mobic and no stomach issues. My > concern is that the ped rheumy said that the next step will be > metholtrexate if necessary as she has already tried 3 NSAIDS. I am > not too happy about using this drug even though I see that it really > helps when I read these forums. > > I am now pursuing aqua therapy because I believe any non drug > intervention that helps is the best ways to go. I would like to > exhaust all of these types of possibilites before moving to the next > class of drugs. > > I hope your daughter feel better soon-it really breaks my heart to > read these forums-my daughter is not nearly as ill as so many of > these children, but it still is painful to watch her suffer. > > > > ________________________________ > From: Amy Hendrickson <ahendrickson68@...> > > Sent: Tue, March 16, 2010 6:30:20 PM > Subject: Help - Lucy again > > > Hi all - > I am still dealing with the ongoing struggle of having almost > everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings > and > since that's the time that she is getting ready for school everyone > seems to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have > pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what > part of > her leg, she says the whole leg. The doctor has told me that that is > not > arthritis. (One of the problems with the rheumy is that everytime > she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is > feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good > mood > and discounts her pain.) Anyway, I am wondering if there is > something more > than jra going on, like possible fibromyalgia. Anyone have any ideas > about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 ,  I know it's scary, but please take 's words to heart. She has been through it all and absolutely knows what she is talking about. Our thoughts are with you and please continue to ask questions.  (and Ezra, 13 yr old systemic) > Hi Amy- > My daughter Mollie (11) was diagnosed with poly arthritis in > November. She has very similar complaints as your daughter. When > she was first diagnosed, the doctor did an ultrasound and you could > see the water on her knee. Her bloodwork is all normal. There is > no denying that the mornigs are much more difficult. Sometimes she > doesn't want to get out of bed! She has complained about her whole > leg hurting as well-she also does specify knees and ankles, wrist > and back (new symptom). She started out on naproxen and was > switched to mobic right away due to stomach complaints. After > playing in the snow this winter she had a lot of pain for 5 days and > the rheumy noted a significant change in her condition as he had > only seen her 2 weeks before. He doubled the mobic. It helped a > lot. I also took her to a nail salon and had her try a parafin > treatment on her hands and feet. She felt so much relief that the > salon ordered me a machine for at > home. We keep it running at all times so she can use it as much as > she wants. > > She developed stomach pains a few weeks into the new dose of mobic > and my pediatrician encouraged us to switch to a pediatric rheumy > who said that the dose of mobic was higher than she would prescribe > and switched her to celebrex. It has been about 1 week and it is > helping, but not as much as the mobic and no stomach issues. My > concern is that the ped rheumy said that the next step will be > metholtrexate if necessary as she has already tried 3 NSAIDS. I am > not too happy about using this drug even though I see that it really > helps when I read these forums. > > I am now pursuing aqua therapy because I believe any non drug > intervention that helps is the best ways to go. I would like to > exhaust all of these types of possibilites before moving to the next > class of drugs. > > I hope your daughter feel better soon-it really breaks my heart to > read these forums-my daughter is not nearly as ill as so many of > these children, but it still is painful to watch her suffer. > > > > ____________ _________ _________ __ > From: Amy Hendrickson <ahendrickson68@ gmail.com> > @group s.com > Sent: Tue, March 16, 2010 6:30:20 PM > Subject: Help - Lucy again > > > Hi all - > I am still dealing with the ongoing struggle of having almost > everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings > and > since that's the time that she is getting ready for school everyone > seems to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have > pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what > part of > her leg, she says the whole leg. The doctor has told me that that is > not > arthritis. (One of the problems with the rheumy is that everytime > she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is > feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good > mood > and discounts her pain.) Anyway, I am wondering if there is > something more > than jra going on, like possible fibromyalgia. Anyone have any ideas > about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 na explains her pain in the same way. She almost always says it hurts her whole arm or her whole leg. I wouldn't rule out Arthritis. Sometimes kids just can't explain it as well or maybe it really does hurt the whole body. I have never had arthritis but maybe the pain radiated outwards? Good luck and keep us updated. ne & na 5 Poly > > > Amy, > I disagree with the doctor saying that the pain all over is not arthur. Jaye will tell me the same thing and she is 16 but after the morning stiffness wears off the pain is generally gone > > > > > > > Help - Lucy again > > > > > Hi all - > I am still dealing with the ongoing struggle of having almost everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings and > since that's the time that she is getting ready for school everyone seems to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what part of > her leg, she says the whole leg. The doctor has told me that that is not > arthritis. (One of the problems with the rheumy is that everytime she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good mood > and discounts her pain.) Anyway, I am wondering if there is something more > than jra going on, like possible fibromyalgia. Anyone have any ideas about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 I, too, am with . To be honest and not to scare you, but my son's rheumy made it his goal to get him off the Celebrex. He felt that with the dose Chris was on (which was 800mgs a day) he had more danger of complications. Because nsaids are sold over the counter, many people think they are less troublesome. But really any drug can cause issues. As you know, things like Tylenol affect the liver. Motrin, Aleve, etc can also, as well as do things to stomachs. As states, being on a DMARD you can go into remission. You can stop the damage the disease is doing. Of course, I understand the fear. We all had it. It is entirely your call as to whether to add the drug. But honestly I was glad we did. got off the Celebrex, and reduced the mtx. His pain levels went down and he was able to do so much more. I hope the aquatherapy gives your daughter relief. It will definitely help with her mobility I think. Just throwing out another idea, I hope your daughter is doing better soon, Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of Price Sent: Tuesday, March 16, 2010 10:55 PM Jra Group Subject: Re: Help - Lucy again , you may not like my words of wisdom, but I do believe it is wisdom. My daughter has had Jra for over ten years. I also co chair a support group of 120 families so I have seen a lot of children with different types of Jra and presentations. Twenty to thirty years ago, your daughter probably would have ended up in a wheelchair and had lots of destruction. She might not have grown to her full height. Her hands and feet might have been deformed. Her chin might have been recessed from major tmj damage. Today that is not the case. An aggressive doctor would not have tried three types of NSAIDs to help her pain. I know you are scared. I know these are powerful drugs. But they work. No amount of PT or OT will stop the destruction. You have to stop the joint destruction. If she is having pain and swelling, then most likely destruction is occuring. You don't want that. No one wants that. I have seen many children go into remission on methotrxate. I, too, was scared of it. But ten years ago, I didn't have any mother to tell me that I needed to put my daughter on it. I am that mother now, telling you that sometimes it is the right thing to do. Don't wait too long with the PT and OT. ( n,21,systemic) Sent fro my iPod On Mar 16, 2010, at 3:54 PM, wendy bey <wlbey@...<mailto:wlbey%40>> wrote: > Hi Amy- > My daughter Mollie (11) was diagnosed with poly arthritis in > November. She has very similar complaints as your daughter. When > she was first diagnosed, the doctor did an ultrasound and you could > see the water on her knee. Her bloodwork is all normal. There is > no denying that the mornigs are much more difficult. Sometimes she > doesn't want to get out of bed! She has complained about her whole > leg hurting as well-she also does specify knees and ankles, wrist > and back (new symptom). She started out on naproxen and was > switched to mobic right away due to stomach complaints. After > playing in the snow this winter she had a lot of pain for 5 days and > the rheumy noted a significant change in her condition as he had > only seen her 2 weeks before. He doubled the mobic. It helped a > lot. I also took her to a nail salon and had her try a parafin > treatment on her hands and feet. She felt so much relief that the > salon ordered me a machine for at > home. We keep it running at all times so she can use it as much as > she wants. > > She developed stomach pains a few weeks into the new dose of mobic > and my pediatrician encouraged us to switch to a pediatric rheumy > who said that the dose of mobic was higher than she would prescribe > and switched her to celebrex. It has been about 1 week and it is > helping, but not as much as the mobic and no stomach issues. My > concern is that the ped rheumy said that the next step will be > metholtrexate if necessary as she has already tried 3 NSAIDS. I am > not too happy about using this drug even though I see that it really > helps when I read these forums. > > I am now pursuing aqua therapy because I believe any non drug > intervention that helps is the best ways to go. I would like to > exhaust all of these types of possibilites before moving to the next > class of drugs. > > I hope your daughter feel better soon-it really breaks my heart to > read these forums-my daughter is not nearly as ill as so many of > these children, but it still is painful to watch her suffer. > > > > ________________________________ > From: Amy Hendrickson <ahendrickson68@...<mailto:ahendrickson68%40gmail.com>> > <mailto: %40> > Sent: Tue, March 16, 2010 6:30:20 PM > Subject: Help - Lucy again > > > Hi all - > I am still dealing with the ongoing struggle of having almost > everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings > and > since that's the time that she is getting ready for school everyone > seems to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have > pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what > part of > her leg, she says the whole leg. The doctor has told me that that is > not > arthritis. (One of the problems with the rheumy is that everytime > she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is > feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good > mood > and discounts her pain.) Anyway, I am wondering if there is > something more > than jra going on, like possible fibromyalgia. Anyone have any ideas > about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Hi, Amy. When the rheumy does the exam, does he/she feel any inflammation of the joints? It can be there and not be seen. I would assume the dr does a complete check of all the joints in her body to feel for any inflammation. Plus, tendons can be inflamed from arthritis and that will cause more widespread pain, as in her feeling like the whole leg hurts. My son often said his ankle or his hips hurt when it was really the tendons around these areas where the rheumy felt the inflammation. Many of our kids will go into the dr and say they feel fine and are in good moods, because they learn to deal with the pain. It is a part of them. So the dr should not discount what you are saying about the morning stiffness and pain just because of how she is later in the day. Could you get a second opinion? Have you kept a written record of how she is doing to take in to the dr? Can you sometimes see the swelling and take a picture in to the rheumy? It is not normal for a child to pretend they have pain. We are not talking about a stomach ache to get out of a test, or a twisted foot that they then can miraculously run on. You are talking about a child who likes school, who cannot get moving as she would like in the morning. Where would she come up with the idea to only be stiff in the morning - she's 8 for goodness sake! A kid who wants to get out of school pretends a stomach ache. Sorry but it always bugs me when people say these kids are making this up! Stick with it - you are her mom, you know your child better than anyone else. If you believe something is going on, then it is. Good luck! Sorry for the rant! Michele ( 22, spondy) Michele J. Tepper Operations First Trust Portfolios, L.P. 630-765-8619 ________________________________ From: [mailto: ] On Behalf Of Amy Hendrickson Sent: Tuesday, March 16, 2010 5:30 PM Subject: Help - Lucy again Hi all - I am still dealing with the ongoing struggle of having almost everybody pooh-pooh Lucy's pain. She is only really miserable in the mornings and since that's the time that she is getting ready for school everyone seems to think she is avoiding school. But she likes school. And yesterday she asked me why she couldn't just be like everyone else and not have pain. That doesn't sound like a kid that is making it up to me. Here's the weird thing: When she gets up in the morning she hurts all over. She says that her legs and her arms hurt. If I ask her what part of her leg, she says the whole leg. The doctor has told me that that is not arthritis. (One of the problems with the rheumy is that everytime she sees Lucy it is in the late afternoon (because of the drive) and Lucy is feeling pretty good. Plus, going to Denver with mom for the day is a treat, so she's always in a great mood. I think the rheumy just sees her good mood and discounts her pain.) Anyway, I am wondering if there is something more than jra going on, like possible fibromyalgia. Anyone have any ideas about the leg pain? Amy and Lucy, 8, poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Amy, Jordon was in a lot of pain, morning stifness, waking up in the middle of the night, and swelling. He had a doctor that told him and I and then my husband that the pain was all in Jordon's head, because on exam he couldn't feel anything, and all of Jordon's appointments were in the afternoon so he had loosened up. We then had an MRI done on Jordon's knees and sure enough it showed a lot of things that his doctor couldn't feel or see, We got another doctor, one that Jordon, my husband and I like, who actually listens to Jordon when he tells him what's wrong with him. So my point is you could go have an MRI done, on any joints you or Lucy thinks might be having the JRA, it would show it... Just expensive, we are lucky that Jordon's insurance covers stuff like that, and hopefully yours does to so you can get one done. It sounds like you have to travel far to see a rheumy, is there another at all by you so you could get a 2nd opinion? From: Tepper, Michele Sent: Wednesday, March 17, 2010 10:13 AM Subject: RE: Help - Lucy again Hi, Amy. When the rheumy does the exam, does he/she feel any inflammation of the joints? It can be there and not be seen. I would assume the dr does a complete check of all the joints in her body to feel for any inflammation. Plus, tendons can be inflamed from arthritis and that will cause more widespread pain, as in her feeling like the whole leg hurts. My son often said his ankle or his hips hurt when it was really the tendons around these areas where the rheumy felt the inflammation. Many of our kids will go into the dr and say they feel fine and are in good moods, because they learn to deal with the pain. It is a part of them. So the dr should not discount what you are saying about the morning stiffness and pain just because of how she is later in the day. Could you get a second opinion? Have you kept a written record of how she is doing to take in to the dr? Can you sometimes see the swelling and take a picture in to the rheumy? It is not normal for a child to pretend they have pain. We are not talking about a stomach ache to get out of a test, or a twisted foot that they then can miraculously run on. You are talking about a child who likes school, who cannot get moving as she would like in the morning. Where would she come up with the idea to only be stiff in the morning - she's 8 for goodness sake! A kid who wants to get out of school pretends a stomach ache. Sorry but it always bugs me when people say these kids are making this up! Stick with it - you are her mom, you know your child better than anyone else. If you believe something is going on, then it is. Good luck! Sorry for the rant! Michele ( 22, spondy) Michele J. Tepper Operations First Trust Portfolios, L.P. 630-765-8619 ________________________________ From: [mailto: ] On Behalf Of Amy Hendrickson Sent: Tuesday, March 16, 2010 5:30 PM Subject: Help - Lucy again Hi all - I am still dealing with the ongoing struggle of having almost everybody pooh-pooh Lucy's pain. She is only really miserable in the mornings and since that's the time that she is getting ready for school everyone seems to think she is avoiding school. But she likes school. And yesterday she asked me why she couldn't just be like everyone else and not have pain. That doesn't sound like a kid that is making it up to me. Here's the weird thing: When she gets up in the morning she hurts all over. She says that her legs and her arms hurt. If I ask her what part of her leg, she says the whole leg. The doctor has told me that that is not arthritis. (One of the problems with the rheumy is that everytime she sees Lucy it is in the late afternoon (because of the drive) and Lucy is feeling pretty good. Plus, going to Denver with mom for the day is a treat, so she's always in a great mood. I think the rheumy just sees her good mood and discounts her pain.) Anyway, I am wondering if there is something more than jra going on, like possible fibromyalgia. Anyone have any ideas about the leg pain? Amy and Lucy, 8, poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I got a message from the nurse today and she said that the rheumy does not know what to make of Lucy, but offered to see her again. I stewed for a while and then called the nurse and told her that the last thing I want to do is come to Denver at 4:30 in the afternoon and have the rheumy feel her joints again and say there's no inflammation and suggest a behavioral psychologist for Lucy. I told her that I thought that either 1) Lucy was making it up (and that I didn't think so), or 2) Lucy is in pain and this is the best quality of life we can expect for her, or 3) we could do a d*mn MRI of her jaw, or her back, or her wrists and see if there is inflammation that the rheumy is not seeing. She said she would let the rheumy know what I thought and get back to me. I'm hoping for the MRI. I'm going to push for it. IF she is making it up, and nothing shows up on the MRI, then I will eat my words. Amy and Lucy, 8, poly P.S. Could she be having joint pain without inflammation? I'm just wondering if a negative MRI would really mean that it's all in her head. On Wed, Mar 17, 2010 at 10:25 AM, <Mathena@...> wrote: > > > Amy, > Jordon was in a lot of pain, morning stifness, waking up in the middle of > the night, and swelling. He had a doctor that told him and I and then my > husband that the pain was all in Jordon's head, because on exam he couldn't > feel anything, and all of Jordon's appointments were in the afternoon so he > had loosened up. We then had an MRI done on Jordon's knees and sure enough > it showed a lot of things that his doctor couldn't feel or see, We got > another doctor, one that Jordon, my husband and I like, who actually listens > to Jordon when he tells him what's wrong with him. > So my point is you could go have an MRI done, on any joints you or Lucy > thinks might be having the JRA, it would show it... Just expensive, we are > lucky that Jordon's insurance covers stuff like that, and hopefully yours > does to so you can get one done. It sounds like you have to travel far to > see a rheumy, is there another at all by you so you could get a 2nd opinion? > > > > From: Tepper, Michele > Sent: Wednesday, March 17, 2010 10:13 AM > > < %40> > Subject: RE: Help - Lucy again > > > Hi, Amy. When the rheumy does the exam, does he/she feel any inflammation > of the joints? It can be there and not be seen. I would assume the dr does a > complete check of all the joints in her body to feel for any inflammation. > Plus, tendons can be inflamed from arthritis and that will cause more > widespread pain, as in her feeling like the whole leg hurts. My son often > said his ankle or his hips hurt when it was really the tendons around these > areas where the rheumy felt the inflammation. Many of our kids will go into > the dr and say they feel fine and are in good moods, because they learn to > deal with the pain. It is a part of them. So the dr should not discount what > you are saying about the morning stiffness and pain just because of how she > is later in the day. Could you get a second opinion? Have you kept a written > record of how she is doing to take in to the dr? Can you sometimes see the > swelling and take a picture in to the rheumy? It is not normal for a child > to pretend they have pain. We are not talking about a stomach ache to get > out of a test, or a twisted foot that they then can miraculously run on. You > are talking about a child who likes school, who cannot get moving as she > would like in the morning. Where would she come up with the idea to only be > stiff in the morning - she's 8 for goodness sake! A kid who wants to get out > of school pretends a stomach ache. Sorry but it always bugs me when people > say these kids are making this up! > Stick with it - you are her mom, you know your child better than anyone > else. If you believe something is going on, then it is. Good luck! Sorry for > the rant! > Michele ( 22, spondy) > > Michele J. Tepper > Operations > First Trust Portfolios, L.P. > 630-765-8619 > > ________________________________ > From: < %40> [mailto: > < %40>] On Behalf Of Amy > Hendrickson > Sent: Tuesday, March 16, 2010 5:30 PM > < %40> > Subject: Help - Lucy again > > Hi all - > I am still dealing with the ongoing struggle of having almost everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings and > since that's the time that she is getting ready for school everyone seems > to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what part of > her leg, she says the whole leg. The doctor has told me that that is not > arthritis. (One of the problems with the rheumy is that everytime she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good mood > and discounts her pain.) Anyway, I am wondering if there is something more > than jra going on, like possible fibromyalgia. Anyone have any ideas about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 yes she can. My Hannah had this for years. Beth & Hannah, OA, HMJS, viatmin d deficiency, asthma Beth " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: Amy Hendrickson <ahendrickson68@...> Sent: Thu, March 18, 2010 8:46:20 PM Subject: Re: Help - Lucy again I got a message from the nurse today and she said that the rheumy does not know what to make of Lucy, but offered to see her again. I stewed for a while and then called the nurse and told her that the last thing I want to do is come to Denver at 4:30 in the afternoon and have the rheumy feel her joints again and say there's no inflammation and suggest a behavioral psychologist for Lucy. I told her that I thought that either 1) Lucy was making it up (and that I didn't think so), or 2) Lucy is in pain and this is the best quality of life we can expect for her, or 3) we could do a d*mn MRI of her jaw, or her back, or her wrists and see if there is inflammation that the rheumy is not seeing. She said she would let the rheumy know what I thought and get back to me. I'm hoping for the MRI. I'm going to push for it. IF she is making it up, and nothing shows up on the MRI, then I will eat my words. Amy and Lucy, 8, poly P.S. Could she be having joint pain without inflammation? I'm just wondering if a negative MRI would really mean that it's all in her head. On Wed, Mar 17, 2010 at 10:25 AM, <Mathena@...> wrote: > > > Amy, > Jordon was in a lot of pain, morning stifness, waking up in the middle of > the night, and swelling. He had a doctor that told him and I and then my > husband that the pain was all in Jordon's head, because on exam he couldn't > feel anything, and all of Jordon's appointments were in the afternoon so he > had loosened up. We then had an MRI done on Jordon's knees and sure enough > it showed a lot of things that his doctor couldn't feel or see, We got > another doctor, one that Jordon, my husband and I like, who actually listens > to Jordon when he tells him what's wrong with him. > So my point is you could go have an MRI done, on any joints you or Lucy > thinks might be having the JRA, it would show it... Just expensive, we are > lucky that Jordon's insurance covers stuff like that, and hopefully yours > does to so you can get one done. It sounds like you have to travel far to > see a rheumy, is there another at all by you so you could get a 2nd opinion? > > > > From: Tepper, Michele > Sent: Wednesday, March 17, 2010 10:13 AM > > < %40> > Subject: RE: Help - Lucy again > > > Hi, Amy. When the rheumy does the exam, does he/she feel any inflammation > of the joints? It can be there and not be seen. I would assume the dr does a > complete check of all the joints in her body to feel for any inflammation. > Plus, tendons can be inflamed from arthritis and that will cause more > widespread pain, as in her feeling like the whole leg hurts. My son often > said his ankle or his hips hurt when it was really the tendons around these > areas where the rheumy felt the inflammation. Many of our kids will go into > the dr and say they feel fine and are in good moods, because they learn to > deal with the pain. It is a part of them. So the dr should not discount what > you are saying about the morning stiffness and pain just because of how she > is later in the day. Could you get a second opinion? Have you kept a written > record of how she is doing to take in to the dr? Can you sometimes see the > swelling and take a picture in to the rheumy? It is not normal for a child > to pretend they have pain. We are not talking about a stomach ache to get > out of a test, or a twisted foot that they then can miraculously run on. You > are talking about a child who likes school, who cannot get moving as she > would like in the morning. Where would she come up with the idea to only be > stiff in the morning - she's 8 for goodness sake! A kid who wants to get out > of school pretends a stomach ache. Sorry but it always bugs me when people > say these kids are making this up! > Stick with it - you are her mom, you know your child better than anyone > else. If you believe something is going on, then it is. Good luck! Sorry for > the rant! > Michele ( 22, spondy) > > Michele J. Tepper > Operations > First Trust Portfolios, L.P. > 630-765-8619 > > ________________________________ > From: < %40> [mailto: > < %40>] On Behalf Of Amy > Hendrickson > Sent: Tuesday, March 16, 2010 5:30 PM > < %40> > Subject: Help - Lucy again > > Hi all - > I am still dealing with the ongoing struggle of having almost everybody > pooh-pooh Lucy's pain. She is only really miserable in the mornings and > since that's the time that she is getting ready for school everyone seems > to > think she is avoiding school. But she likes school. And yesterday she > asked me why she couldn't just be like everyone else and not have pain. > That doesn't sound like a kid that is making it up to me. > > Here's the weird thing: When she gets up in the morning she hurts all > over. She says that her legs and her arms hurt. If I ask her what part of > her leg, she says the whole leg. The doctor has told me that that is not > arthritis. (One of the problems with the rheumy is that everytime she sees > Lucy it is in the late afternoon (because of the drive) and Lucy is feeling > pretty good. Plus, going to Denver with mom for the day is a treat, so > she's always in a great mood. I think the rheumy just sees her good mood > and discounts her pain.) Anyway, I am wondering if there is something more > than jra going on, like possible fibromyalgia. Anyone have any ideas about > the leg pain? > > Amy and Lucy, 8, poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Amy- I was told at a JA Convention that the Jaw can be active and other joints might not be! Widdis, Isabel-10, poly JRA, TMJ, Uvitis Help - Lucy again Hi all - I am still dealing with the ongoing struggle of having almost everybody pooh-pooh Lucy's pain. She is only really miserable in the mornings and since that's the time that she is getting ready for school everyone seems to think she is avoiding school. But she likes school. And yesterday she asked me why she couldn't just be like everyone else and not have pain. That doesn't sound like a kid that is making it up to me. Here's the weird thing: When she gets up in the morning she hurts all over. She says that her legs and her arms hurt. If I ask her what part of her leg, she says the whole leg. The doctor has told me that that is not arthritis. (One of the problems with the rheumy is that everytime she sees Lucy it is in the late afternoon (because of the drive) and Lucy is feeling pretty good. Plus, going to Denver with mom for the day is a treat, so she's always in a great mood. I think the rheumy just sees her good mood and discounts her pain.) Anyway, I am wondering if there is something more than jra going on, like possible fibromyalgia. Anyone have any ideas about the leg pain? Amy and Lucy, 8, poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Hello, I am familiar with your story. My daughter's case was similar.When we were refered to the Rhuemy she had one swollen and very tender finger that had never been injured, but other than that there were no other signs. She did have pain in a lot of other joints, but she had lived with it so long the thought it was normal.Her blood work was normal except for her ANA test and even when her finger was the size of a sausage her sed rate was normal. She had no other visible signs of inflamation and the Rheumy could not feel anything in her joints, but she did an MRI just to be sure and it showed inflamation in her finger joints. And we have since learned that has arthritis damage in her jaw and we are now looking at her spine. All of this might have been undiagnosed if not for that MRI. And my daughter does have joint pain even though there are no visible signs of inflamation, so I say you are her mother and you know her best! I would really push for that MRI. Best of luck to you and your family! , (16,poly) > > > > > > > Amy, > > Jordon was in a lot of pain, morning stifness, waking up in the middle of > > the night, and swelling. He had a doctor that told him and I and then my > > husband that the pain was all in Jordon's head, because on exam he couldn't > > feel anything, and all of Jordon's appointments were in the afternoon so he > > had loosened up. We then had an MRI done on Jordon's knees and sure enough > > it showed a lot of things that his doctor couldn't feel or see, We got > > another doctor, one that Jordon, my husband and I like, who actually listens > > to Jordon when he tells him what's wrong with him. > > So my point is you could go have an MRI done, on any joints you or Lucy > > thinks might be having the JRA, it would show it... Just expensive, we are > > lucky that Jordon's insurance covers stuff like that, and hopefully yours > > does to so you can get one done. It sounds like you have to travel far to > > see a rheumy, is there another at all by you so you could get a 2nd opinion? > > > > > > > > From: Tepper, Michele > > Sent: Wednesday, March 17, 2010 10:13 AM > > > > < %40> > > Subject: RE: Help - Lucy again > > > > > > Hi, Amy. When the rheumy does the exam, does he/she feel any inflammation > > of the joints? It can be there and not be seen. I would assume the dr does a > > complete check of all the joints in her body to feel for any inflammation. > > Plus, tendons can be inflamed from arthritis and that will cause more > > widespread pain, as in her feeling like the whole leg hurts. My son often > > said his ankle or his hips hurt when it was really the tendons around these > > areas where the rheumy felt the inflammation. Many of our kids will go into > > the dr and say they feel fine and are in good moods, because they learn to > > deal with the pain. It is a part of them. So the dr should not discount what > > you are saying about the morning stiffness and pain just because of how she > > is later in the day. Could you get a second opinion? Have you kept a written > > record of how she is doing to take in to the dr? Can you sometimes see the > > swelling and take a picture in to the rheumy? It is not normal for a child > > to pretend they have pain. We are not talking about a stomach ache to get > > out of a test, or a twisted foot that they then can miraculously run on. You > > are talking about a child who likes school, who cannot get moving as she > > would like in the morning. Where would she come up with the idea to only be > > stiff in the morning - she's 8 for goodness sake! A kid who wants to get out > > of school pretends a stomach ache. Sorry but it always bugs me when people > > say these kids are making this up! > > Stick with it - you are her mom, you know your child better than anyone > > else. If you believe something is going on, then it is. Good luck! Sorry for > > the rant! > > Michele ( 22, spondy) > > > > Michele J. Tepper > > Operations > > First Trust Portfolios, L.P. > > 630-765-8619 > > > > ________________________________ > > From: < %40> [mailto: > > < %40>] On Behalf Of Amy > > Hendrickson > > Sent: Tuesday, March 16, 2010 5:30 PM > > < %40> > > Subject: Help - Lucy again > > > > Hi all - > > I am still dealing with the ongoing struggle of having almost everybody > > pooh-pooh Lucy's pain. She is only really miserable in the mornings and > > since that's the time that she is getting ready for school everyone seems > > to > > think she is avoiding school. But she likes school. And yesterday she > > asked me why she couldn't just be like everyone else and not have pain. > > That doesn't sound like a kid that is making it up to me. > > > > Here's the weird thing: When she gets up in the morning she hurts all > > over. She says that her legs and her arms hurt. If I ask her what part of > > her leg, she says the whole leg. The doctor has told me that that is not > > arthritis. (One of the problems with the rheumy is that everytime she sees > > Lucy it is in the late afternoon (because of the drive) and Lucy is feeling > > pretty good. Plus, going to Denver with mom for the day is a treat, so > > she's always in a great mood. I think the rheumy just sees her good mood > > and discounts her pain.) Anyway, I am wondering if there is something more > > than jra going on, like possible fibromyalgia. Anyone have any ideas about > > the leg pain? > > > > Amy and Lucy, 8, poly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2010 Report Share Posted March 19, 2010 Beth- We went through something similar--a neuro doc who brushed CJ's headaches aside and basicaly told him " middle school is rough, deal with it " deciding that what we now know were migraines were just stress. Here's what we did, and I hope it helps: We went back to CJ's pediatrician and told him how we were treated, and asked her to make another recommendation to a different neuro. The right pediatrician will respond to something like this. You know your child best, and with rare exceptions most moms know when their kids are making stuff up and when something's truly wrong. We went to a second neuro who looked at CJ for 10 minutes and said OF COURSE he's having migraines, prescribed very successful medicine. We'll never know if those headaches were the very beginnings of CJ's arthritis (his bloodwork was clean at that time), but no kid should be in pain just because an adult refuses to pay better attention. Try to state your case calmly and clearly that you don't think the doctor is a good " fit " and request referral to another. I don't know about you, but I'd gladly drive an extra 20 minutes to go to a doctor I really trusted. We have too much on our plates to be fighting our doctors as well. Allie, who's learned how to ROAR when her kid needs it Quote Link to comment Share on other sites More sharing options...
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