Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 I had surgery at age 59. In November, they had to cut off some loose hooks, but I'm doing fine now. I had A/P. By you having breathing problems, I think that may be why he's saying posterior for you. When my anterior was done, a lung had to be collapsed. That could not be done at our high altitute, so I had to go lower. I had the same rods with hooks on top and screws on bottom. The screws have given no problems. My curve above the rods has gotten worseand that pulled the top hooks loose. I may have to have the fusion extended later. The rods did go from T2-L5, but from T2-4 had to be cut off. Good luck with your surgery. ===== Jeanette __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Dear Jeannette, Thank you for your post. At L5, were you able to bend at the waist to each side? Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Lana, No, I cannot bend at all except at the hips and knees. ===== Jeanette __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Welcome . There has been an educational administrator on this list who received CI. Perhaps you will hear from her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 , Sorry that your daughter is struggling so much. My daughter is 17 and has never had bad side effects from the pred. When she has been on it she just feels wonderful except for the last time and it did not seem to affect her at all, that was a bummer in one sense but I do not like her on it anyway. Not sure where you are located to know if you have another rheumy to use for a second opinion. Is your rheumy a pediatric rheumy? It is most important to see a Pediatric Rheumatologist for our little kiddos. We travel 3 hours to see our rheumy because we love him. We had one that was coming to Wichita which is only 30 minutes away but we did not care for her and I do not think she liked us either, so we changed. It never hurts to get a second opinion and most good doctors are not offended when you do. My daughter is on several meds. She is on meloxicam, hydroxichloroquine, folic acid, methotrexate and enbrel for her arthritis, then on Keppra for seizrues and prevacid for her tummy. sounds like a lot and it really is but it is what has her feeling better then she has in quite some time. We have only been on the Enbrel now for 9 weeks and are in KC this weekend to see the rheumy on Monday. If she does well on the Enbrel he said he will begin weining her off of some of her other meds. I am ready for that, just not sure what he will wein her off of first. Also not sure if he will start to wein this week or wait another couple of months to make sure things are stable. I hope you can get is off the pred soon and save your sanity. Veri & Jaye 17 poly New to this group... Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 , You are correct in your assessment of prednisone. It is not the best for long term usage. It also seems to be causing more side effects than is good either. It seems like, to me, that she needs a biologic like enbrel. If she is taking naproxen and MTX, the next step is the TNF-blockers/biologics. Okay, Ped. rheum. is totally different than adult rheum. If your doc. isn't board certified in peds, then change. The practice in ped rheum is to " put the fire out " meaning, hit the arthritis hard with meds, then back off slowly. This is to prevent joint damage and increase quality of life. Adult onset, they'll let you hurt a while, while figuring out what you have. You don't want a kid to wait around , while their growing joints are being damaged. Our ped rheumy started enbrel within 3 - 4 months. This was a miracle and lifesaver at our house. is has had this for 11 months. She needs more. Audra 14, poly 07 Peyton 12, poly 08 > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 If she has been on mtx five months, that is long enough to know if it will hold her. My daughter has lots of wrists problems. She gets them injected. The steroids go right to the joint, and you don't get all of the side effects. n's wrists would turn and freeze. Three days after injections , she is back to normal. I would get a second opinion, and personally, I wouldn't put n on steroids for a wrist. We use them when her organs become an issue. She is a systemic. ( n ,22, systemic) Sent from my iPhone On Feb 4, 2011, at 9:36 AM, " twinsmommy81 " <twinsmommy2005@...> wrote: > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 You don't want to give her another med for the prednisone activity. I always gave n her steroid very early in the morning. I never split the dose because she needed her rest more than the insomnia. I would call your doc, tell him you want to taper now, and you want an injection. But I am known as an opinionated mother, and after twelve years of experience I don't put up with much. But I am blessed with a fabulous doc, who never considered putting n on steroids for what an injection could fix. Sent from my iPhone On Feb 5, 2011, at 8:04 PM, Price <bc.price@...> wrote: > If she has been on mtx five months, that is long enough to know if it will hold her. My daughter has lots of wrists problems. She gets them injected. The steroids go right to the joint, and you don't get all of the side effects. n's wrists would turn and freeze. Three days after injections , she is back to normal. > I would get a second opinion, and personally, I wouldn't put n on steroids for a wrist. We use them when her organs become an issue. She is a systemic. ( n ,22, systemic) > > Sent from my iPhone > > On Feb 4, 2011, at 9:36 AM, " twinsmommy81 " <twinsmommy2005@...> wrote: > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Hi , The pred is nothing more then a great big band aid and yes it causes all kinds of different side effects for different kids.It can take several months for MTX to work and then when you do start to see some improvement and start raising the dose you still have more months to wait. Ask about one of the Biologicals no sense in wasting precious time when within a couple of weeks you could get your little girl back. Becki and systemic onset at 2 now 12 1/2 drug free come Valentines ________________________________ From: twinsmommy81 <twinsmommy2005@...> Sent: Fri, February 4, 2011 11:36:06 AM Subject: New to this group... Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Many thank you's to Veri, Audra, , and Becki! I had my suspicions about this, but its so comforting to hear that I'm thinking in the right direction. One of my first questions to her pediatric rheumatologist was could we inject the joint and he said no. Back to that being a nurse thing, I think the most direct form of medication with as little systemic side effects would be best. I found out today too that I work with a lady whose 12 year old daughter has poly and she texted her peds rheumy in front of me to let him know about us and he said " Come Monday morning, I'll do all I can to get them in. " We live in North Central Virginia, so we're about 60 miles to DC and Richmond, and 75 to Charlottesville. I'm really hoping this new doctor will be able to help us. I talked at length with is's OT on Friday, and started sensing that she wanted to tell me to find a different doctor, but most of the time you're just not allowed to say that to your patients! > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 My daughter has had her wrists, ankles, knees, elbows, hips, hmmm...I can't remember what else...injected so yes they do this. They put her out with happy drugs and did all the injections at once. So glad you are getting to see another doctor. Sounds like you are on the right track to get your daughter the correct treatment. e, mom to 'joe' now 24 poly+ From: <twinsmommy2005@...> Subject: Re: New to this group... Date: Saturday, February 5, 2011, 10:24 PM  - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Joint injections are also a very swift way to get a troublesome joint/joints under control with minimal side effects. Good luck and keep us updated. Becki and 12 systemic onset ________________________________ From: <twinsmommy2005@...> Sent: Sun, February 6, 2011 12:15:24 AM Subject: Re: New to this group... Many thank you's to Veri, Audra, , and Becki! I had my suspicions about this, but its so comforting to hear that I'm thinking in the right direction. One of my first questions to her pediatric rheumatologist was could we inject the joint and he said no. Back to that being a nurse thing, I think the most direct form of medication with as little systemic side effects would be best. I found out today too that I work with a lady whose 12 year old daughter has poly and she texted her peds rheumy in front of me to let him know about us and he said " Come Monday morning, I'll do all I can to get them in. " We live in North Central Virginia, so we're about 60 miles to DC and Richmond, and 75 to Charlottesville. I'm really hoping this new doctor will be able to help us. I talked at length with is's OT on Friday, and started sensing that she wanted to tell me to find a different doctor, but most of the time you're just not allowed to say that to your patients! > > Hi All! My name is and my 5 year old daughter, is, was diagnosed >with juvenile arthritis in May of last year. In March of '10 she broke her >collar bone while wrestling with her twin brother. Within a few days we noticed >that she could no longer straighten her left wrist or bend it back to make a > " stop " hand signal. After a myriad of tests, medications, and possible >diagnoses, the doctors settled on juvenile arthritis. When we intially saw the >rheumatologist at the end of May he said it was psoriatic arthritis, but her >skin remains perfect. We started with just naproxen, but on the first visit with >the rheumy he said that was not enough to calm the inflammation quickly so we >started a long course of prednisone and continued the naproxen. The prednisone >worked great, getting her within 10 degrees of her " normal. " At the end of >August we weaned off the prednisone and within 3 weeks she had lost nearly all >of her range of motion again. Back to the rheumy and he had us start MTX, >restart the prednisone, and continue the naproxen. In a short amount of time she >had her range of motion back and we were working with the OT on muscle >strengthening instead of increasing ROM. We weaned off the prednisone just after >the New Year and lo and behold, lost range of motion again. We saw her rhuemy >again about 2 weeks ago and he increased her MTX, continue current dose of >naproxen, and back on prednisone AGAIN! Each time she's gone back on the >prednisone, the side effects have been even worse than the time before. Now she >literally " bounces off the walls " and she's not regained any ROM yet either. >I've tried giving her coffee, but it just isn't working this time on prednisone. >Since the end of May she has also worn a specially made splint at night time to >keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting to >be too much. I feel like we're chasing our tales and that our current " plan " >keeps putting us back to square one. There has to be something better out there. >My questions are this - should we pursue a second opinion? I know rheumy's are >in short supply from reading the AF's book about children with arthritis, but >I'm really starting to wonder. I'm so thankful we live in an area of the country >where there are 4 rheumy's within a reasonable driving distance (1-3 hours of >driving depending on which direction we go). Also, does anyone have any ideas to >help with the hyperactivity from the prednisone? Like I said, we've tried >coffee, and I really don't want to add another medication like ritalin, but I'm >afraid we're at that point as well. I'm wondering about the prednisone - I know >there are severe side effects and various complications from long term >prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become > " just a wrist " and we no longer risk her life for it? > Some of these questions are just me thinking out loud, but any ideas would be >greatly appreciated! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Just wanted you to know that very early on had very aggressive joint involvement in his wrists and ankles. He does have some minor joint damage in both wrists but because it happened so young he compensate with his fingers. does push ups on his finger tips or makes a fist. He is on his 7th yr of baseball and played 1 yr of football. He is trying out for both this spring for his middle school. We did OT but he was to young, now that he is older and more athletic and in his growth spurt the joint damage does not seem to be so permenant as it is improving after the end of each sport.. Hugs, Becki and 12 systemic Onset ________________________________ From: <twinsmommy2005@...> Sent: Sun, February 6, 2011 12:24:15 AM Subject: Re: New to this group... - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed >with juvenile arthritis in May of last year. In March of '10 she broke her >collar bone while wrestling with her twin brother. Within a few days we noticed >that she could no longer straighten her left wrist or bend it back to make a > " stop " hand signal. After a myriad of tests, medications, and possible >diagnoses, the doctors settled on juvenile arthritis. When we intially saw the >rheumatologist at the end of May he said it was psoriatic arthritis, but her >skin remains perfect. We started with just naproxen, but on the first visit with >the rheumy he said that was not enough to calm the inflammation quickly so we >started a long course of prednisone and continued the naproxen. The prednisone >worked great, getting her within 10 degrees of her " normal. " At the end of >August we weaned off the prednisone and within 3 weeks she had lost nearly all >of her range of motion again. Back to the rheumy and he had us start MTX, >restart the prednisone, and continue the naproxen. In a short amount of time she >had her range of motion back and we were working with the OT on muscle >strengthening instead of increasing ROM. We weaned off the prednisone just after >the New Year and lo and behold, lost range of motion again. We saw her rhuemy >again about 2 weeks ago and he increased her MTX, continue current dose of >naproxen, and back on prednisone AGAIN! Each time she's gone back on the >prednisone, the side effects have been even worse than the time before. Now she >literally " bounces off the walls " and she's not regained any ROM yet either. >I've tried giving her coffee, but it just isn't working this time on prednisone. >Since the end of May she has also worn a specially made splint at night time to >keep her hand and wrist in a neutral position. > > > I work as a Registered Nurse and have seen alot, but this is really getting >to be too much. I feel like we're chasing our tales and that our current " plan " >keeps putting us back to square one. There has to be something better out there. >My questions are this - should we pursue a second opinion? I know rheumy's are >in short supply from reading the AF's book about children with arthritis, but >I'm really starting to wonder. I'm so thankful we live in an area of the country >where there are 4 rheumy's within a reasonable driving distance (1-3 hours of >driving depending on which direction we go). Also, does anyone have any ideas to >help with the hyperactivity from the prednisone? Like I said, we've tried >coffee, and I really don't want to add another medication like ritalin, but I'm >afraid we're at that point as well. I'm wondering about the prednisone - I know >there are severe side effects and various complications from long term >prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become > " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be >greatly appreciated! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 We were told over and over that ankles were to hard to inject without ultrasound guidance.I finally threw a fit and got to send him to a ped ortho surgeon.Turned out it was real easy and didn't need the ultra sound. He was given about 5 drugs of consious sedation via IV. He was awake but " Nobody was home " He was only out for about 15-20 minuites then started pulling the pulse ox monitor off his finger,lol the nurses kept running in but they new it was time to send him home.One of the drugs was an amnesia drug so he couldn't figure out the next day why he has scabs on his ankle.By the way he got carried in the hospital and later ran through the Video store. Becki and ________________________________ From: bound for london <boundforlondon@...> Sent: Sun, February 6, 2011 1:10:48 AM Subject: Re: New to this group... My daughter has had her wrists, ankles, knees, elbows, hips, hmmm...I can't remember what else...injected so yes they do this. They put her out with happy drugs and did all the injections at once. So glad you are getting to see another doctor. Sounds like you are on the right track to get your daughter the correct treatment. e, mom to 'joe' now 24 poly+ From: <twinsmommy2005@...> Subject: Re: New to this group... Date: Saturday, February 5, 2011, 10:24 PM - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed >with juvenile arthritis in May of last year. In March of '10 she broke her >collar bone while wrestling with her twin brother. Within a few days we noticed >that she could no longer straighten her left wrist or bend it back to make a > " stop " hand signal. After a myriad of tests, medications, and possible >diagnoses, the doctors settled on juvenile arthritis. When we intially saw the >rheumatologist at the end of May he said it was psoriatic arthritis, but her >skin remains perfect. We started with just naproxen, but on the first visit with >the rheumy he said that was not enough to calm the inflammation quickly so we >started a long course of prednisone and continued the naproxen. The prednisone >worked great, getting her within 10 degrees of her " normal. " At the end of >August we weaned off the prednisone and within 3 weeks she had lost nearly all >of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting >to be too much. I feel like we're chasing our tales and that our current " plan " >keeps putting us back to square one. There has to be something better out there. >My questions are this - should we pursue a second opinion? I know rheumy's are >in short supply from reading the AF's book about children with arthritis, but >I'm really starting to wonder. I'm so thankful we live in an area of the country >where there are 4 rheumy's within a reasonable driving distance (1-3 hours of >driving depending on which direction we go). Also, does anyone have any ideas to >help with the hyperactivity from the prednisone? Like I said, we've tried >coffee, and I really don't want to add another medication like ritalin, but I'm >afraid we're at that point as well. I'm wondering about the prednisone - I know >there are severe side effects and various complications from long term >prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be >greatly appreciated! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 , You've gotten excellent advice already so you don't need more. But we apparently don't live terribly far from one another so if you email me privately (liz_smith@...) I will be happy to share what I know about our Virginia pediatric rheumatologists with you if you'd like. Liz From: [mailto: ] On Behalf Of Sent: Sunday, February 06, 2011 1:15 AM Subject: Re: New to this group... Many thank you's to Veri, Audra, , and Becki! I had my suspicions about this, but its so comforting to hear that I'm thinking in the right direction. One of my first questions to her pediatric rheumatologist was could we inject the joint and he said no. Back to that being a nurse thing, I think the most direct form of medication with as little systemic side effects would be best. I found out today too that I work with a lady whose 12 year old daughter has poly and she texted her peds rheumy in front of me to let him know about us and he said " Come Monday morning, I'll do all I can to get them in. " We live in North Central Virginia, so we're about 60 miles to DC and Richmond, and 75 to Charlottesville. I'm really hoping this new doctor will be able to help us. I talked at length with is's OT on Friday, and started sensing that she wanted to tell me to find a different doctor, but most of the time you're just not allowed to say that to your patients! > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 Welcome to the group ...so sorry you are here but as you have already seen...there is much knowledge and experience here. My was 5 when he was diagnosed with poly almost two years ago...his knee was the worst joint initially. At our very first rheumy (pediatric) appointment the doctor mentioned that he would probably end up on Humira or Enbrel. In fact we tried to get into a trail for Humira but he ended up not qualifying. We started on Naproxen in March '09, added injectible MTX in May '09, and Enbrel in July '09...and Enbrel has been our 'miracle' drug. has shown no signs of active disease since November '09...when we stopped the Naproxen. We are currently weaning him from the MTX and after a little scare in December...all is going well. 's toes, knees, hips, shoulders, elbows, and possibly fingers are all impacted. We recently added weekly OT and his fine motor skills have improved greatly. I am so happy you are getting a second opinion...based on your timeline and her continued struggles...I am suprised the rheumy hasn't added a biologic like Enbrel. Please update us after your appointment on Monday...all the best! & , 7, poly...SPD...nystagmus Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 Your ped rheumy sounds like a doozy. Both naprosyn and prednisone can cause stomach upset. Give Liz a buzz. You are in very good hands with her. She will put you in the know back there. If your daughter has her wrist injected, she will be put out. I always tell the docs that they should put the mother out because it is wayyyyyy harder on the mother than on the child. It is nothing to n, and I am pacing the floor during it. It is quick. About 15-20 minutes. You won't even have time to finish a coffee. Sometimes, it would hurt n for a day or two. But then by day three, she always got full ROM back. n has had systemic jra for over 11 years with no remission. So she does have a bit of damage in those wrists. She has full ROM in them, but she can't do push ups or cartwheels anymore. When her wrists are bad, she can't use her hands at all. In grade school I would write out her homework for her as she dictated it to me. Today, the care for JRA is very good. Get a new doctor. And make sure they watch her tmj. I read a recent article that 80% of kids have tmj involvement, and up to 75% have no symptoms. Sometimes, the ROM is even okay. The only way to image the TMJ correctly is by an MRI. Good luck. You have to be a junkyard dog for your child. (n, 22, systemic) On Feb 5, 2011, at 10:24 PM, wrote: > - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. > Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 My daughter was about 3 when we had her wrist injected with steroids. It was the best move. She could not lift it up, like you described. The day after the steroids she was a new girl. Her wrist has range of motion now. > - I am so excited to hear from someone who's child had/has wrist issues. I'm so shocked - they inject wrists? I deliberately asked is's rheumy for a steroid injection and was told " No. We don't inject wrists, only knees, hips, and shoulders. " I hate the idea of treating one wrist with by mouth steroids. > Did your daughter ever get to a point where she compensated greatly for her wrist? Lexi's OT is worried about the pressure she's putting on the joints her in fingers because she doesn't have full ROM in the wrist and also the way she twists her arm and shoulder to compensate that she may cause long term damage from it. She also has alot of muscle atrophy - the head of her ulna is much more prominant on the left than on her right and it sticks out like a second bump where most of us have only one bump. She calls it her " ankle " (not sure who's been giving her anatomy lessons!) In the last few days Lexi has also started complaining of hip pain, so I'm wondering what is going on. I had called her rheumy when she was having chest pain from the stomach upset with naproxen and prednisone, and he blew me off and said it was nothing (that made me really mad to begin with!) Thankfully we have a really great pediatrician that called in zantac for her and the problem has gone away. I'm suddenly feeling like I've been transported back to the 1960's regarding Lexi's treatment for her arthritis! Time to get with the times and join every one else in 2011!!!! Thank you again! > > > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 , I'm just curious - when n's wrists have been affected haven't her labs showed systemic inflammation in the CRP & ESR? Since onset 's Rheumy has treated based on the labs, which showed lots of inflammation and a very low hemoglobin. So, when I asked about injections she said we needed to get the inflammation under control systemically, rather than with injections. Albeit, never had extreme joint involvement like you describe with n's wrists - it was more the systemic stuff of fevers, anemia, and mid level inflammation in wrists, knees, ankles. Now that is off the daily pred and we are lowering the methotrexate I'm hoping we don't just jump back on oral pred if things start cropping up. Em is still on .8ml Mtx, Mobic, and Kineret so I think the first thing we'd do is increase the Kineret. Anyway, I was just surprised to hear of cortisone shots for n, since she is a systemic. I'm happy to hear this would be an option over oral pred!! nn > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 Hi nn, At the beginning, n was on oral prednisone for the overall inflammation. She only had the fevers at the beginning of the disease. She had the rash for about 6 years. We still see it sometimes. After initial onset, n's labs were never bad. The highest her sed rate ever got was 25. CRP wasn't too high either. The rest of the time, her sed rate usually was in the normal zone so we treated the joints. You know, there is a theory that MOST systemics have MAS without showing the outward signs, but their labs show it. It usually is at onset. Kineret was not invented yet, 11 years ago. Our only option was enbrel, and it was brand spanky new. n went on mtx and then enbrel. She would have periodic joint injections. For awhile there, they were every 3 months. Every systemic is different as you know, and some are tougher than others. An interesting fact for you is that sed rate is usually VERY low with MAS onset. n's was 2. If you are already weaning the mtx, it sounds like she might be a monocyclic. That would be a very good thing. n is considered a polycyclic. (n, 22, systemic) On Feb 6, 2011, at 2:56 PM, nn wrote: > , I'm just curious - when n's wrists have been affected haven't her labs showed systemic inflammation in the CRP & ESR? Since onset 's Rheumy has treated based on the labs, which showed lots of inflammation and a very low hemoglobin. So, when I asked about injections she said we needed to get the inflammation under control systemically, rather than with injections. Albeit, never had extreme joint involvement like you describe with n's wrists - it was more the systemic stuff of fevers, anemia, and mid level inflammation in wrists, knees, ankles. Now that is off the daily pred and we are lowering the methotrexate I'm hoping we don't just jump back on oral pred if things start cropping up. Em is still on .8ml Mtx, Mobic, and Kineret so I think the first thing we'd do is increase the Kineret. Anyway, I was just surprised to hear of cortisone shots for n, since she is a systemic. I'm happy to hear this would be an option over oral pred!! > nn > > > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 nn - how long has been on the oral pred? Just curious > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2011 Report Share Posted February 6, 2011 Hi , started oral pred in the end of October 2009, and just discontinued at the end of January - so a total of 15 months. She was on IV pred in the hospital, then came home on 60mg oral, then slowly weaned down to around 10mg for quite a while, before being able to get off the pred after we started kineret this past September. I hope you can get your daughter off of pred. Did you mention something about using coffee for prednisone hyperactivity?? Can you explain that ... nn (, 9, systemic) > > > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Hi nn - Wow, 15 months of prednisone. We've been on it a total of 6 months in the past 9, on again, off again. My mom is a special ed teacher, that's how I found out about the coffee. I was telling her how frustrated I was with how hyper Lexi had become, unable to sit still, unable to sleep, and that I was thinking of asking for ritalin for her. She said not to put her on ritalin, but a couple of times a day to give her 2 or 3 hershey kisses or even half a cup of coffee. Ritalin is a stimulant, but for some reason settles kids down so similar idea with the caffeine being a stimulant. The first two times we were on prednisone, a half of cup of coffee in the mornings was all Lexi needed to have a good day. Since December though, the coffee hasn't seemed to work although she managed to drink the ENTIRE pot Friday while I was in the shower and we had the best day in months! I'd rather get a new ped rheumy and new med regimen that keep allowing her to drink that much! I thought it was just coincidence, but I was talking with a friend of mine at church whose little boy has leukemia and he was on pred for a while and she did the same thing and said it worked wonders for him too. Its the craziest thing! > > > > > > > > > Hi All! My name is and my 5 year old daughter, is, was diagnosed with juvenile arthritis in May of last year. In March of '10 she broke her collar bone while wrestling with her twin brother. Within a few days we noticed that she could no longer straighten her left wrist or bend it back to make a " stop " hand signal. After a myriad of tests, medications, and possible diagnoses, the doctors settled on juvenile arthritis. When we intially saw the rheumatologist at the end of May he said it was psoriatic arthritis, but her skin remains perfect. We started with just naproxen, but on the first visit with the rheumy he said that was not enough to calm the inflammation quickly so we started a long course of prednisone and continued the naproxen. The prednisone worked great, getting her within 10 degrees of her " normal. " At the end of August we weaned off the prednisone and within 3 weeks she had lost nearly all of her range of motion again. Back to the rheumy and he had us start MTX, restart the prednisone, and continue the naproxen. In a short amount of time she had her range of motion back and we were working with the OT on muscle strengthening instead of increasing ROM. We weaned off the prednisone just after the New Year and lo and behold, lost range of motion again. We saw her rhuemy again about 2 weeks ago and he increased her MTX, continue current dose of naproxen, and back on prednisone AGAIN! Each time she's gone back on the prednisone, the side effects have been even worse than the time before. Now she literally " bounces off the walls " and she's not regained any ROM yet either. I've tried giving her coffee, but it just isn't working this time on prednisone. Since the end of May she has also worn a specially made splint at night time to keep her hand and wrist in a neutral position. > > > > > I work as a Registered Nurse and have seen alot, but this is really getting to be too much. I feel like we're chasing our tales and that our current " plan " keeps putting us back to square one. There has to be something better out there. My questions are this - should we pursue a second opinion? I know rheumy's are in short supply from reading the AF's book about children with arthritis, but I'm really starting to wonder. I'm so thankful we live in an area of the country where there are 4 rheumy's within a reasonable driving distance (1-3 hours of driving depending on which direction we go). Also, does anyone have any ideas to help with the hyperactivity from the prednisone? Like I said, we've tried coffee, and I really don't want to add another medication like ritalin, but I'm afraid we're at that point as well. I'm wondering about the prednisone - I know there are severe side effects and various complications from long term prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become " just a wrist " and we no longer risk her life for it? > > > > > Some of these questions are just me thinking out loud, but any ideas would be greatly appreciated! > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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