feeling blue today!daughter have another rough day!she is 2 and we were diagnosed 2months ago with systemic jra.the weather here in alberta,canada has alot to do with her flareups.today was a bad day, lots of swelling in all her joints and just cries!i feel helpless when she is like this and get down on myself when i can't do anything for her except cuddle her.she is on napryson and prednisol steriods.lots of meds for a little person.wanted to know if there was anyone else out there who has been dealing with similar things and how do you cope with all of it?
blue in canada
tanyajTANYA, SO SORRY TO HEAR ABOUT YOUR LITTLE ONE. POST OVER ON THE RA MESSAGE BOARDS. THEY ARE VERY BUSY AND WE HAVE SEVERAL MOMS THERE THAT HAVE CHILDREN WITH JRA THAT CAN HELP YOU. WELCOME; POST OFTEN AND GIVE US A CHANCE TO GET TO KNOW YOU. THIS IS A WONDERFUL SUPPORT GROUP. YOU WILL LOVE EVERYONE AND THEY WILL BECOME YOUR 2ND FAMILY!! thanks karen,it has been a rough couple of days with her and just got back from another doctors appointment and they are increasing the amount of steriods that she is on because we are trying to wein her and she just keeps swelling up when we do.it is so frustrating for me, but the pain she is in is the worst part.if i could take it all away and put it in my body i would be so happy.i just want my happy,active little girl back!!
tanya
Tanya,Is there any earthly way to move to a warm, dry climate?
Karen,I know exactly how you are feeling about taking away their pain. I would give my life to cure my son.
hi tanya
My 23 month old daughter just had her diagnosed confermed yesterday of polyarticular jra. So I'm not sure how to cope with it yet either .But I just wanted to let you know that you are not alone out there.
tammi
Just be there for her. I think that's the best you can do at this point. She'll probably be in some pain, and as much as you'd like to, there really isn't much you can do, except to maybe give her some childrens tylenol. But as long as you're there, she will appreciate it.allison ,my daugther was just diagnoised at 23 months and since you have had it from a young age I was wondering do you think you will grow out of it like they tell me my daugther will? Do you have any long term affects from it. Did you ever go into a remission period. If you can write back and tell me . I'm just wandering how this is going to effect my daugther in the long run. I know everyone is different but I would like to hear from other people. Thanks tammijoActually, In recent years I personally believe that I am not going to grow out of it. My rhumy told me that there is an 80% chance that I would, but by now, I think I'm going to have to live with it. Long term effects...hmm...none physical, really. Some deterioration in my ankles, I think, but that really doesn't bother me a whole lot. If you just keep up with her medicine, and don't make her do anything that she feels would be painful (not that you would). I kinda feel like I went into a remission period, but I don't think I really did. I just kinda ignored it for a while, hoping that maybe that would make it go away, but no. Mentally, I think that having arthritis has helped me a lot. I realized my boundries and how to overcome obstacles. It may be a terrible disease, but I sometimes wonder if it's a blessing in disguise.Thank you allison,
Tammi -
My daughter was diagnosed at 11 months. They told me that she might grow out of it, but now have said she probably won't. She had quiet periods between about 2 and 4 and maybe 6 to 9 or ten. Hers definitely seemed most problematic during these growth spurts. I'm still hopeful she'll have less problems as she finishes growing (soon I hope) but the doctors don't really think that will happen.
Of course, this is just OUR experience and I hope yours will be better. I met someone who felt their daughter did grow out of it. I hope that is what happens for your daughter.
tanya-
I am brand new to this site but can relate with you. My daughter is 6 and was diagnosed with JRA in Nov. She has had 2 doses of prednisone, which masked the pain, but it all came back as soon as she stopped it.. She is on methotrexate with no results, and there are some days whe can hardly walk. I know just how you feel and I cry almost daily. I am having a very hard time coping. I cry a lot, read everything I can on the subject, and wish I could take it away too, I have no easy answers. I have 2 other parents that I can call that I asked the doctor for names of others with this. We are going to a famiuly weekend of kids with JRA in March and I hope to get some good ideas there. We are starting a remicaid treatment tomorrow and I pray it works and doesn't hurt her.
Cathy b
http://www.gossiping.net/phpBB2/index.php?mforum=kaytyray Hi for all of you who our parents of kids with arthritis this is another board that i belong to that is more geared toward parents of kid with arthritis. You can talk with other moms who know what it is like . You can tell your story , vent , get support whatever . Check it out if you get the chance.I realize this is an older post...and I don't really know what I can offer but....what the heck. Has anyone ever watched the discovery health channels "mystery diagnosis" ? If you have, you've noticed a trend with the mothers...pushy, constatly questioning, and they always think they're right. This may sound stupid but, adpot that. Become it. The only voice for your kid, is you. Speak up, ALWAYS, no matter how many times a Dr shakes his head, if it just doesn't feel like enough is being done, it does not make you a bitch to keep pressing peoples buttons until you get the answer you want. I'm sure there were several Doctors that my mother drove CRAZY, but she always got what she was after out of them. All this after they accused her of child abuse! Just because no one thought that maybe my swelling wasn't caused by a "fall" as they always said it was. She had more literature and pamphlets on JRA than I can imagine. I know she never stopped me from doing anything either. If I wanted to climb something, she let me, I don't think she bothered herself with things like "oh, I wonder if it hurts her" If it had hurt, I would have stopped. :) And she carried me. Lord that woman carried me for YEARS. I was probably almost 9 before mom and dad decided they just couldn't carry me anymore. Then we just starting planning around it. Making sure there were places to rest, and when there wasn't, I don't ever remember being yelled at for sitting on shelves and clothes racks. LoL sounds silly, but really, what difference does it make? Don't be sad. If your child was diagnosed at a young age, they don't know any different, and your reaction to the disease will be what they carry with themselves forever. If you react headstrong, like the world couldn't stop you, they aren't going to let it slow them down. There are so many worse things your child could have gotten, you have to look on the bright side. Always look on the bright side... :)[QUOTE=tammijo]hi tanya
My 23 month old daughter just had her diagnosed confermed yesterday of polyarticular jra. So I'm not sure how to cope with it yet either .But I just wanted to let you know that you are not alone out there.
tammi
[/QUOTE]arriscolwell,
I agreee with you 110%! Because my mom was determined to get me feeling better, she had gotten me on medicans that prevented joint dammage at an early age, and now I only have very little dammage in my right hip. I thank the Lord every day for giving me such great parents!
Have you tried taking her to a warm pool or hot tub. It helps a lot to my toddler.