Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Helen, I would give it some time. n's has always moved around. Also, some days are worse than others. She may have swollen fingers one day, and the next they are perfectly fine. Each child is different, and you know your child the best. We have been lucky that it has never settled in one joint longer than a day or two. So if she starts hurting for more than a few days, we know to call the doctor. (n, 15, systemic) A question on joints. Hi guys, Ive had this question bobbing in my head for a few days and I thought i would ask the experts. Nick is getting over his latest flare but is still not 100%, tires easy, poor appetite, pale, dark circles under his eyes at times etc.... Hes still complaining, on and off, of different joints hurting. Usually its his knees and fingers, now hes telling me his wrsit hurts and his back. Other than last october when he had a swollen finger his joints have never swollen, felt warm or turned red. He still has full range of motion ( he has hypermobile joints). His rhuemy is playing a kind of wait and see game. Im just wondering if this is the right approach. I know shes the expert and all, but i hate to still have my child complain of hurting. The problem is each time we see her, hes doing well and there doesnt ever seem to be anything wrong, his labs are always good ( have been since the 1st few months). I just worry that im not being pro-active enough. What do you guys think???? Hugs Helen, mom to (6,systemic) Get a FREE online virus check for your PC here, from McAfee. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Hi Helen, My opinion is slightly differant than 's.If memory serves me correctly Nick had a very brief round of steroids and currantly is just on a NSAID.It sounds to me like the joint symptoms are progressing.If Nick's next rheumy appointment is say within a month then I do agree, just keep logging things in your journal.If his appointment is a couple months away or more and things seem to progress then I would call,fax or e-mail with your concerns.I think there has been a mention of MTX.If there is now swelling and inflimation,that is what causes the joint damage. is very much a pro at this and knows n well,just like I know my .You are still new at this and considering Nick might have presented poorly things didn't stay that way.Things seemed to settle down on there own, only for the joint symptoms slowely getting worse.Each and every child are differant.I personaly don't think you can be to pro active.Before I found this list I didn't know squat and would just nod my head in agreeance(sp).Once I found this list and learned so much I became a key role in s tretment.Made them get as aggressive as they would allow. Follow your heart and head,the worst thing that can happen is they say no but they might say yes. I am sure you will get lots of differant opinions on this matter so just know I am only giving mine.s severity and presentation was his and his alone.He might not have had lung,heart,liver or splean involvement but his drug regimine or dosage of drugs surpassed many much,much older.The funny thing is I got most of what I asked for then got scared that my 3 yr old was taking higher doses and more drugs then alot of adults.It all worked out in the end.His daddy might have RA and trying to explain why he can no longer jump in daddy's arms ,he just gets a blank look.He doesn't remember because it's been so long but he says he will let daddy hug him hard if he needs MTX or Enbrel shots. I hope things just settle down on there own again. Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hi Helen! That is one of the problems we are facing with . She too is hypermobile. She has gone through a battery of bone scans and blood work without a conclusion. Her rheumy is doing the wean off all drugs and start over with "clean" tests wait and see game. is seeing great results with massages every two weeks for an hour. Her blood is flowing great all over and her muscles are relaxed and she feels good. She will add swimming right before next time (then come home a go straight to bed!). It is hard to see your kids suffer with anything. It makes it worse to give meds inappropriate for the situation too. Hopefully someone will come up with a solution. Have a sunny day! Carol and 16 AS and ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Helen, It may also help to have him talk with his school psychologist about what is happening to him (or a private counselor). The physical pains are real and are happening to him, I am not discounting that, but he is also showing signs of withdrawal from what you have described with him not wanting to do anything. Having someone to talk to other than mom and dad can really help. And for them to help him understand that he can still do a lot of things. It can be scary for anyone having a diagnosis like this, watching your friends and siblings to do what they want etc. Depression is more common in children than people think. Just a thought from some one who has been there. e Quote Link to comment Share on other sites More sharing options...
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