Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Welcome, and I am sorry you had to seek us out. My 6 yr old daughter has Pauci JIA, was diagnosed back in November and I have had many of the same feelings. We were lucky in that Zoe never really had any pain other than periodic night pain, I just noticed the swelling. We did Naprosyn for a short period and that didn't really help the swelling. I chose to work with a Naturopath/Homeopathic practitioner and we have seen great results. Have you considered making some diet changes for your daughter also, along with her meds? There seems to be some success with removing gluten, sugars and artificial sweeteners & preservatives from the diet. I am sure the art. Sweet. & preservatives make sense but you may be wondering why gluten(wheat) and sugars. In a lot of our kids, their guts are soo disrupted from all the medications, especially antibiotics (cause many of them have had colds/viruses prior to diagnosis) that they just don't process nutrition the best and can't absorb it. By eliminating the wheat/gluten and sugars you are helping her body to get rid of the yeast build up that triggers the poor digestive process. There is soo much more I could share with you on this subject, if you would be interested, email me. If you really think you would like to try this approach along side or separated from traditional treatments, I would suggest you search out a Naturopath in your area or mine works with people via phone. All my best, I know how much it sucks to see our kiddos hurting. Hugs to you. joann From: [mailto: ] On Behalf Of Manu Dargan Sent: Monday, July 07, 2008 2:18 AM Subject: Ashvarika Hello All, I am new to this group. My 6 year old daughter Ashvarika has systemic JIA. She was diagnosed when she was 2. At present she takes Methotrexate shots, Humira shots, Prednisone, folic acid, vitamin D supplements and pepcid. Even with all these medications she is still not getting the relief one would expect...I am so worried about her. All day long the only thought that comes to my mind is....why her? I'm sorry if I sound like I'm babbling...but I don't know what else to do. She has constant debilitating pain in her knees, fingers, neck etc...There must be other parents on this group going thru the same thing...I would love to hear from them to see how they cope and try to make their little ones lives a little easier. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Hi, Sorry to hear your little one is suffering with systemic jra. My 8 year old daughter, has had systemic jra since the age of 3. She was on MTX and Humira, until we recently switched to Kineret. It is still early, but we are seeing improvement. Last night, she was actually running!! The daily shots aren't too bad, and she does okay with them. If it is an option, ask your doctor about kineret. Take care and I hope your daughter improves soon! Sophie 's mom > > Welcome, and I am sorry you had to seek us out. My 6 yr old daughter has > Pauci JIA, was diagnosed back in November and I have had many of the same > feelings. We were lucky in that Zoe never really had any pain other than > periodic night pain, I just noticed the swelling. We did Naprosyn for a > short period and that didn't really help the swelling. I chose to work with > a Naturopath/Homeopathic practitioner and we have seen great results. Have > you considered making some diet changes for your daughter also, along with > her meds? There seems to be some success with removing gluten, sugars and > artificial sweeteners & preservatives from the diet. I am sure the art. > Sweet. & preservatives make sense but you may be wondering why gluten(wheat) > and sugars. In a lot of our kids, their guts are soo disrupted from all the > medications, especially antibiotics (cause many of them have had > colds/viruses prior to diagnosis) that they just don't process nutrition the > best and can't absorb it. By eliminating the wheat/gluten and sugars you > are helping her body to get rid of the yeast build up that triggers the poor > digestive process. > > > > There is soo much more I could share with you on this subject, if you would > be interested, email me. If you really think you would like to try this > approach along side or separated from traditional treatments, I would > suggest you search out a Naturopath in your area or mine works with people > via phone. > > > > All my best, I know how much it sucks to see our kiddos hurting. Hugs to > you. > > > > joann > > > > From: [mailto: ] On Behalf > Of Manu Dargan > Sent: Monday, July 07, 2008 2:18 AM > > Subject: Ashvarika > > > > Hello All, > > I am new to this group. My 6 year old daughter Ashvarika has systemic > JIA. She was diagnosed when she was 2. At present she takes > Methotrexate shots, Humira shots, Prednisone, folic acid, vitamin D > supplements and pepcid. Even with all these medications she is still > not getting the relief one would expect...I am so worried about her. > All day long the only thought that comes to my mind is....why her? > I'm sorry if I sound like I'm babbling...but I don't know what else to > do. She has constant debilitating pain in her knees, fingers, neck > etc...There must be other parents on this group going thru the same > thing...I would love to hear from them to see how they cope and try to > make their little ones lives a little easier. Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Hi, and welcome! Yes there are other parents who are going through this and you have found some of them. This group offers incredible support, so ask any questions you may have. The meds do take time to begin to work, and it can be quite frustrating. I am sorry your daughter is having such pain. There are different ways to help relieve the pain - warm baths, gentle exercises, etc - that people have used to bring some comfort to their children. Some people use heated mattress pads to relieve morning stiffness, my son takes warm showers in the morning (or whenever) if he is having stiffness/pain. Plus there are some who use the naturopath that was previously mentioned. Again, welcome, please ask questions, vent, whatever, knowing that we have been where you are. BTW, I love your daughter's name. Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of Manu Dargan Sent: Monday, July 07, 2008 1:18 AM Subject: Ashvarika Hello All, I am new to this group. My 6 year old daughter Ashvarika has systemic JIA. She was diagnosed when she was 2. At present she takes Methotrexate shots, Humira shots, Prednisone, folic acid, vitamin D supplements and pepcid. Even with all these medications she is still not getting the relief one would expect...I am so worried about her. All day long the only thought that comes to my mind is....why her? I'm sorry if I sound like I'm babbling...but I don't know what else to do. She has constant debilitating pain in her knees, fingers, neck etc...There must be other parents on this group going thru the same thing...I would love to hear from them to see how they cope and try to make their little ones lives a little easier. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Hi There, I'm currently a new member also, I have a 6 year old daughter Emerson with Systemic JRA and severe Uveitis. She's on Enbrel, Methotrexate, folic acid, pred forte drops and atropine not counting her allergy med's. Emerson has hardly ever complained of hurting until recently she's been sick so we had to hold off on the Enbrel but she's been on it since she's 15 months old, as for as pain it works great. How long has she been on Humira? I can't imagine what your going thru, but there are tons of families in this group that will offer any advice that they can. It's a long road but we all with get thru it. Pray it helps. Give her plenty of love and comfort her! Krissy (Emmie systemic JRA/Uveitis, Landen 2yr ana positive) Ashvarika Hello All, I am new to this group. My 6 year old daughter Ashvarika has systemic JIA. She was diagnosed when she was 2. At present she takes Methotrexate shots, Humira shots, Prednisone, folic acid, vitamin D supplements and pepcid. Even with all these medications she is still not getting the relief one would expect...I am so worried about her. All day long the only thought that comes to my mind is.....why her? I'm sorry if I sound like I'm babbling...but I don't know what else to do. She has constant debilitating pain in her knees, fingers, neck etc...There must be other parents on this group going thru the same thing...I would love to hear from them to see how they cope and try to make their little ones lives a little easier. Thanks. Quote Link to comment Share on other sites More sharing options...
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