Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Hi, I'm forwarding this message to the group, as it came directly to my inbox. Welcome, Kmdyl : ) I'm sure that a few parents here will have some suggestions. Also, I hope that your daughter has some success with this new medicine. How did you learn about the clinical trials for Mobic? Is there a chance that she will be given just a placebo or is it certain that she will get the medication? If it does work well and is able to better control her inflammation, does she get to continue using this med after the study is over? Take Care, Georgina Re: Welcome to Thank you so much for the warm welcome. I am so happy that I have found people with the same problems that my daughter faces everyday. My daughter who is now 6 years old was first dignosed with jra in 1996 after many months of not knowing what was wrong with her. She suffers with her knee joints and in her ankles. She is now being put in a study for the medicine mobick. So far no type of medicine has controlled her inflammation. I am curious if anyone can tell me anything that can help her move a little easier in the mornings, this seems to be her worse times.Thank youKmdyl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 I learned of the study of mobic through Brittany doctor. She uses Dr. Abraham Gedilia from LSU Childrens Hospital in New Orleans, La. For the first 6 weeks of the study it will be unknown if she is actually on the mobic or not, but for the remaining 6 weeks she will be put on the mobic, so that all comparisons can be made. Than if the side effects are less or not so severe the clinic board will take this information to the FDA to try and get it approved. If it is approved, than they will also be able to approve valox and sulbrex for children to take, being that mobic is in the same medical family as those medications. At this point, I am willing to try to find anything that actually gets the inflammation from the knee and ankles. Kaylan and Brittany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Hi Kaylan, My son hasn't participated in any clinical trials but if we ever have the opportunity to be involved in a study of one of the newer, longer-acting, growth hormone treatments I'd like to sign him up. I hope that Brittany has a good response to this med and that she finally has some improvement in her joints. Let us know how it goes, okay? Take care, Georgina I learned of the study of mobic through Brittany doctor. She uses Dr. Abraham Gedilia from LSU Childrens Hospital in New Orleans, La. For the first 6 weeks of the study it will be unknown if she is actually on the mobic or not, but for the remaining 6 weeks she will be put on the mobic, so that all comparisons can be made. Than if the side effects are less or not so severe the clinic board will take this information to the FDA to try and get it approved. If it is approved, than they will also be able to approve valox and sulbrex for children to take, being that mobic is in the same medical family as those medications.At this point, I am willing to try to find anything that actually gets the inflammation from the knee and ankles.Kaylan and Brittany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Maureen- My daughter , who just turned 3, was diagnosed at 17 mos with pauci, which was at that time in just one knee. NSAIDs did not fully control the swelling, so we did a joint injection with great results. was symptom free for almost a whole year. Her knee returned to "normal looking." You'd never have known she had the disease. Unfortunately, the swelling did return eventually and spread into other joints. She is now on methotrexate, relafen and folic acid. While she is doing quite well, the swelling in the knee is very stubborn. Just won't go down. I'm considering asking about another joint injection for that. For her, it worked wonders. As far as long term effects, there is some possibility of avascular necrosis, especially with repeated injections. It's unlikely she'd have a problem with one. Good luck. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Maureen, And welcome to our group : ) I'm replying through the mailing list so that others will be able to read your message, too. I'm sure you'll have some responses from parents of youngsters with pauci JRA. My son has had JRA for 7 years but he has never had joint injections done (he's needed oral steroids, as the systemic features of his JRA were troublesome). Others here have gone that route though, often times with very good results. Several posts are available in the group archives, with specific info about the procedure and lots of great advice included. As time permits, you may want to explore those as well. They can be accessed at: /messages Try typing in "joint injection". Aloha, Georgina Re: Welcome to I just want to thank you--for being out there and knowing there's other people to talk to and share your concerns with..I'm trying to find someone who has dealt with a toddler growing up with pauciarticular JRA..It is so hard to find the right things to do to help her cope..My daughter is 15 months old and already her knee is so stiff..I am looking into the injection therapy but am afraid for fear of what the long term effects will be on her little body..If you know of someone in a similar situation or has been thru this please let me know..Thank you for being someone who understands and is willing to utilize their time in such a giving way.maureen Quote Link to comment Share on other sites More sharing options...
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