Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Welcome to the group! I am 13 with JRA and there are tons of people on this network who can help you if you have questions about JRA or if you need advice. This is really a fantastic group. I am so glad I found it too and I have made great friends. Best wishes Shea Reasoner (Shay Ree so ner) (13 polyarticular JRA and pain disorder) Sent from my iPad On Nov 23, 2010, at 3:17 PM, " LesleyM " <lmalone255@...> wrote: Hello. My name is Lesley and my daughter, Maddie, was diagnosed with polyarticular JRA in July at 15 months old. I am so glad to have finally found a group for support and information! I just wanted to introduce myself. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Hello Lesley, Welcome to the group. There are a great bunch of folks here to answer questions, give support, and just if listen if you need to vent. Best wishes to you and your little one! , (17, juvenile psoriatic arthritis, TMJ) Sent on the Sprint® Now Network from my BlackBerry® New to JRA Hello. My name is Lesley and my daughter, Maddie, was diagnosed with polyarticular JRA in July at 15 months old. I am so glad to have finally found a group for support and information! I just wanted to introduce myself. Thanks! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 New to JRA Hello. My name is Lesley and my daughter, Maddie, was diagnosed with polyarticular JRA in July at 15 months old. I am so glad to have finally found a group for support and information! I just wanted to introduce myself. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Hi Lesley and welcome to our group. I am sorry that Maddie has been diagnosed with JIA but am glad you found our group. My daughter Jaye is 16 and was diagnosed Polyarticular five years ago. The information you will be able to get from this group is wonderful. Any questions you have are good questions to ask. When things are tough and you need to vent this is the place to vent. We all understand. We have many mom's and some dad's on this list that have been through everything with their kids. We have several adults that have grown up with JIA and are living wonderful lives. This is the best place to get support. What part of the country are you from? Do you have a local support group that you can get involved with. I am from Kansas and there is nothing local here but some of the people on this list are very active in their local groups. I hope that you have a good group of family and friends to give you support as well but if you do not this group can become to feel almost like family. I for one have very little support other then this group so it is very valuable to me. I have wonderful friends but they just do not understand JIA and they probably never will. Veri & Jaye 16 poly New to JRA Hello. My name is Lesley and my daughter, Maddie, was diagnosed with polyarticular JRA in July at 15 months old. I am so glad to have finally found a group for support and information! I just wanted to introduce myself. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 Dear Shea, Thank you for your e-mail. I joined becuase it seems likely that my daughter, Theresa (aged 11) may have juvenile arthritis in her ankles, elbows and hips. She has some mild pain. I wanted to hear from other people with experience of the disease. I want to know what the chances are of it going away naturally as she grows and I want to know what the best drugs are and when they should be taken. Also, side effects etc. If she has the disease and it is getting bad then I also want her to be able to chat with others with the disease so she does not feel alone with it. Then I am sure she will love to chat to you. However, at the moment, while we are not sure if she has it, I am going to keep it low-key with her so as not to alarm her. It is early days yet and the diagnosis is not certain yet so we will see. I would like to send eveyone on this group my best wishes. Best regards,  Sandy Allsop Hampshire, UK ________________________________ From: Shea Reasoner <sheareasoner1@...> " " < > Sent: Wed, 24 November, 2010 8:55:53 Subject: Re: New to JRA  Welcome to the group! I am 13 with JRA and there are tons of people on this network who can help you if you have questions about JRA or if you need advice. This is really a fantastic group. I am so glad I found it too and I have made great friends. Best wishes Shea Reasoner (Shay Ree so ner) (13 polyarticular JRA and pain disorder) Sent from my iPad On Nov 23, 2010, at 3:17 PM, " LesleyM " <lmalone255@...> wrote: Hello. My name is Lesley and my daughter, Maddie, was diagnosed with polyarticular JRA in July at 15 months old. I am so glad to have finally found a group for support and information! I just wanted to introduce myself. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 Welcome, and G'day from Australia! It is indeed a terrific group, - we have been membrrs for a few years now; our son Bayly was diagnosed at around 13 months and he's 8 now (almost 9 if you ask him). There are some most wise people on board, and all you have to do is ask1 Best, Jo Bayly, 8, extended oligo JIA > > > , > It is good to hear that you are seeing progress and that the inflamation has decreased. Hopefully soon the inflamation will be gone all together. Another important thing is that you have a good feeling about your doctor. To be able to communicate with the doctor is so important. I hope you are seeing a pediatric rheumatologist. If so i am sure that they have sent you to have Maddies eyes checked for inflamation also. From all I have read, the inflamation in the eyes is much less likely in kids that are diagnosed with polyarticular but they still need to be checked. As for your comment of having no idea what to expect from this disease we all understand that. After dealing with this for the last five years I am still not sure what to expect. My daughter has never been textbook about anything. And by the way, there is no textbook case for JIA. All kids are different, every person on this list has a different story. Some of the kids on this list have gone several years before they get a diagnosis, others like my daughter are diagnosed almost immediatly. Well I say almost immediatly, had symptoms for at least five or six years as we looked back on her medical records but we just chalked them up to being a very active child and growing pains. Jaye has had health issues from birth, but at age 11 she had her first major flare and within two weeks the pediatrician was sending us to a rheumatologist and opthmatologist with a tentitive diagnosis of JIA. Probably because he had her whole medical history to look at and was suddenly seeing all the other things we had written off for so many years. Jaye is on Meloxicam, Hydroxichloroquine, Folic Acid and Prevacid daily for her arthritis and then on a weekly injection of Methotrexate. She is also on medication for a seizure disorder that is very controlled, yeah!!! We may not have control of the JIA but the seizures we do. My hope and prayer for you all is that the inflamation will be taken care of by the Naproxin and that you do not have a need to move on to other meds. If by chance you do there is someone on this list that has been on bascially every medication out there that will be here to give you some encouragment. This disease can be very scary and probably every single one of us have vented at one point or ten times how much we Hate it. But we keep fighting for our kids. So feel free to ask questions and share your experience. Even as a newly diagnosed story you have information that will help and encourage others. > > Veri & Jaye 16 Poly > > > > > > > Re: New to JRA > > > > > Thank you for the warm welcome! I am in the Chicago area and have been > looking for a group since my daughter was diagnosed. I really appreciate the > support. I do have a great support system of friends and family, however, no > one has first hand knowledge of JIA. This is so new to my husband and I. We > are not sure what to expect from this disease. She has made wonderful > progress already and has since started walking (almost running) and her > inflammation has decreased. She has been affected in her ankle, knee and > wrist. She is currently in Aquatherapy and OT and takes Naproxen twice a > day. We have recently switched Dr.s and have a good feeling about our new > Dr. > > Thanks again and Happy Thanksgiving! > > Lesley (Maddie, 18 months, JIA) > -- > FYI-New email address lmalone255@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 Hey Everyone, My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. Thank you for listening Candi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 Dear Candi, One of the hard parts about the JRA journey is going from a regular kid to being a kid who is sick. Honestly, the best. For her to now when she has done too much is for her to feel what overdoing it is. Then she will know her limits. It's like swimming in a cold pool, you have to wade before you jump in. I know what her struggles feel like and the best thing during pain is hugs and encouragement. I hope that she feels well soon. Getting off of prednisone isn't fun. Best wishes Shea Sent from my iPad On Nov 28, 2010, at 8:04 PM, " bejeweledbycandi " <bejeweledbycandi@...> wrote: Hey Everyone, My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. Thank you for listening Candi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Candi - Sorry to hear about your daughter's struggle. Someone on this list gave me some good advice when my then six year old was diagnosed. They told me that the first six months after diagnosis are the most intense and difficult. A lot of the unknowns seem to resolve after that and you all learn to live with this disease. The other thing I can offer is that when Lucy started her shots, I would let her pick a " prize " that she would get after the shot. Sometimes it was a $5 stuffed animal. Other times it was a $1 sundae at McD's. It worked for Lucy. Good luck and keep us posted! Amy and Lucy, 8, poly On Sun, Nov 28, 2010 at 7:04 PM, bejeweledbycandi < bejeweledbycandi@...> wrote: > > > Hey Everyone, > > My name is Candi and my six year old little girl was diagnosed with > Polyarticular JIA about 4 months ago - she has it everywhere. I have been > reading many of your posts, and you all seem so supportive of each, and I > would love to be a part of that. Right now we are just still trying to cope. > is on Methotrexate and Naproxen and has just come off of 6 weeks of > Prednisone. The steroids seemed to really alleviate her pain and now that > she is off of it the pain is returning and I worry about her. She is a real > trooper though and truly my hero. The only thing she really complains about > through all this is her shots on Fridays - we have to hold her down and it > breaks my heart - I hate Fridays! I just hate to see her in so much pain and > really don't know what else to do for her. We do yoga and exercises > everyday, moist heat, warm baths, everything we have been told to and yet I > feel like it is not enough. I feel helpless, but I know you all know exactly > how I feel and that is why I think it is important for me to be here. You > can talk to family and friends about everyday trials but I don't think > anyone can understand exactly what we are going through like you guys can. > > My main problem besides this awful disease is that doesn't seem to > know her limitations or she won't accept them. She will push herself until > her legs are practically buckling and her hands are so cramped up that she > can't lay her hands flat. She is extremely reluctant to tell me where and > when she is in pain, I think for fear that I will prohibit her from playing > or doing what every kid should be doing - having fun. I don't want to hold > her back but yet I don't want her to hurt herself either. I was curious if > anyone else has this issue or any advice they can share. I admire her > courage more than I can tell you but I also don't want her to be a martyr > either. I don't baby her (even though I want to) and I really don't want > this disease to be a controlling force in her life, but I don't know where > the balance needs to be. I appreciate any and all that you can share with me > because honestly I am completely overwhelmed. > > Thank you for listening > > Candi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > Hey Everyone, > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > Thank you for listening > > Candi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 You need to be aware about the differences between injectable mtx and oral. All of the injectable is absorbed. When it is taken orally, you don't know how much is really being absorbed. So if you go on the injectable at the beginning, you will know sooner rather than later if something else might be needed. If you go orally, you might waste some time trying to figure out if the mtx isn't being absorbed or is it just not enough to fight the inflammation. Also, injectable mtx goes thru the liver once. Oral mtx goes thru the liver twice. So all of this should be considered. ( n,21, systemic for 11 years) Sent from my iPhone On Nov 29, 2010, at 11:38 AM, " Mandi " <mcubberley1126@...> wrote: > Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. > > I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > > > > > Hey Everyone, > > > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > > > Thank you for listening > > > > Candi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Hi Candi, My son is 14 and was diagnosed in '07. My daughter is 12, and was diagnosed in '08. It has been a difficult journey. It took my son about a year on and off steroids to finally wean off them completely. She is young. It is hard for her to understand why shen she hurts, so her nutty parents are adding insult to injury with a shot. But this is when you have to use tough love and do it for her own good. I know you know this, but you are alone. We had to hold down my son when we started the Enbrel and Humira. Are you using EMLA cream? This deadens the injection site before the injection. It helps tremendouly psychologically! My daughter was on injectable MTX and Enbrel. I remember the MTX not being painful for her. If she is still in pain, your Dr. may recommend biologics or also called TNF factor blockers. Here, they typically start with Enbrel, then advance if they need to. The goal with juve. arthritis is to hit it heavy with drugs quickly to " put out the fire " then back off when they are in remission. So don't be worried if this happens. Educate yourself and be prepared. These drugs keep my kids going. Family and friends. I hate to tell you, but sometimes even my husband doesn't understand. My parents nor inlaws understand the day to day living with this disease. They don't see the daily struggles. They don't understad why, when my kids are fatigued and tired, they are quiet. They don't understand why I would put them on those expensive shots. The only person that does is probably my bff with a chronically ill son and other parents with the same problems. You will find your support group. It is great here, but sometimes you need more. Contact your local arthritis foundation, and see if there is a local support group. Find out about your state's JRA summer camp. It is a complete blast for your daughter, and well medically staffed. Mom also gets to meet other parents and talk. It is very very helpful. My son is very reluctant to tell me when he is hurting. He thinks I may " call the doctor " and put him on IV drugs or something. Because that is what I did when he was first diagnosed. It took a while to get his meds regulated until he was under some sort of control. He is on Humira injections, and the next step is IV meds. He is starting to trust me more now and I think realize that I am trying to prevent joint damage and crippling. He us begining to understand. I know I said a lot. I know that there is more to say. Educate yourself in all the ways you can regarding Jia. Keep your faith close to your heart. Sometimes it goes beyond Mom and we must reach higher for strength. We will all be here. Keep us updated. Audra > > Hey Everyone, > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I never knew any of that. His dr explained everything but did not say anything about the obsorption of the meds. Thank you for that information. > Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. > > I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > > > > > Hey Everyone, > > > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > > > Thank you for listening > > > > Candi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Pretty much that is what our rheumy said also about the absorption. But I had talked to enough mom's on this list ahead of time and so he did not go into detail about. Our's also commented that the stomach upset is often much worse with the oral then the injection. We never tried the oral we went right to the injections. Veri & Jaye 16 poly Re: Re: New to JRA I never knew any of that. His dr explained everything but did not say anything about the obsorption of the meds. Thank you for that information. > Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. > > I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > > > > > Hey Everyone, > > > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > > > Thank you for listening > > > > Candi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 For the oral worked well. He would take the pills on a Friday and he had minimal stomach issues and the med did reduce his inflammation. We never used the injections. He never had issues with the liver, so he could continue to use the oral. They are monitored by blood work, and if anything does show up it could be switched. So as you can tell, every child is different and every case is different. Being educated as much as possible about this disease and the treatments for it is so important. This helps you make the most informed decision regarding your child’s care. Michele ( 23, spondy) From: [mailto: ] On Behalf Of veristroud@... Sent: Monday, November 29, 2010 2:43 PM Subject: Re: Re: New to JRA Pretty much that is what our rheumy said also about the absorption. But I had talked to enough mom's on this list ahead of time and so he did not go into detail about. Our's also commented that the stomach upset is often much worse with the oral then the injection. We never tried the oral we went right to the injections. Veri & Jaye 16 poly Re: Re: New to JRA I never knew any of that. His dr explained everything but did not say anything about the obsorption of the meds. Thank you for that information. > Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. > > I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > > > > > Hey Everyone, > > > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > > > Thank you for listening > > > > Candi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I have to agree with . For some the oral works for them. My daughter started oral MTX, then switched to injectable but this caused her to have such anxiety issues with it and vomiting just because it was taken out of the cupboard. So we went back to the oral. She did much better with the oral than the injectable and continues to be on the oral with no difference in labs. We had tried to lower the MTX when it was injectable to see if it would help with the anxiety and vomiting. It didn't. She went back to the oral and we increased the dosage again. Much much better. So it can vary with each person. e, mom to 'joe' 23 poly+ > Welcome to our group Candi. My name is Mandi and I have a 5 yo son who was diagnosed almost a year ago. He is on Methotrexate and Folic Acid Vitamins. We were given the option of doing the injections or giving the meds to him orally in some juice (you may ask your dr about this option). My son also does not seem to keep his limits down and I have asked his dr about that and his dr said that we should let him push himself to find his limits. If he keeps going above the limits then to allow him to do so because he then will be able to keep going and honestly, what does not slow him down only makes him stronger. > > I would say to let your daughter find her own limits to be able to test them and find where she feels comfortable. Also talk to your dr and find out about the oral meds instead of the injections, it helps alot knowing you do not have to give the injection. > > > > > > Hey Everyone, > > > > My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. > > > > My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. > > > > Thank you for listening > > > > Candi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Welcome Candi and I am sorry you have to be here. It is so hard watching your child sick and in pain. Amy - Avery 17 systemic ________________________________ From: bejeweledbycandi <bejeweledbycandi@...> Sent: Sun, November 28, 2010 8:04:10 PM Subject: New to JRA Hey Everyone, My name is Candi and my six year old little girl was diagnosed with Polyarticular JIA about 4 months ago - she has it everywhere. I have been reading many of your posts, and you all seem so supportive of each, and I would love to be a part of that. Right now we are just still trying to cope. is on Methotrexate and Naproxen and has just come off of 6 weeks of Prednisone. The steroids seemed to really alleviate her pain and now that she is off of it the pain is returning and I worry about her. She is a real trooper though and truly my hero. The only thing she really complains about through all this is her shots on Fridays - we have to hold her down and it breaks my heart - I hate Fridays! I just hate to see her in so much pain and really don't know what else to do for her. We do yoga and exercises everyday, moist heat, warm baths, everything we have been told to and yet I feel like it is not enough. I feel helpless, but I know you all know exactly how I feel and that is why I think it is important for me to be here. You can talk to family and friends about everyday trials but I don't think anyone can understand exactly what we are going through like you guys can. My main problem besides this awful disease is that doesn't seem to know her limitations or she won't accept them. She will push herself until her legs are practically buckling and her hands are so cramped up that she can't lay her hands flat. She is extremely reluctant to tell me where and when she is in pain, I think for fear that I will prohibit her from playing or doing what every kid should be doing - having fun. I don't want to hold her back but yet I don't want her to hurt herself either. I was curious if anyone else has this issue or any advice they can share. I admire her courage more than I can tell you but I also don't want her to be a martyr either. I don't baby her (even though I want to) and I really don't want this disease to be a controlling force in her life, but I don't know where the balance needs to be. I appreciate any and all that you can share with me because honestly I am completely overwhelmed. Thank you for listening Candi Quote Link to comment Share on other sites More sharing options...
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