Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 She was on prednisone at the very beginning - from about January last year to about April when they were finally able to wean her off. Is Mobic more powerful than naproxyn then? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 lisa I was wondering if lexi is on prednisone?? it helped my daughter when she had so many flares, her knee would get swollen and worm and she barely can walk on that leg. her doct also put her on mobic instead of naprox when she is in more pain than usual it also helped. Hope lexi starts doing better soon. kay lampe( amber poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 , I'm really sorry to hear this! I'm glad you have a diagnosis and treatment plan though. The IVs were tough for (while hospitalized) and she still hates blood draws. She recently started going back to the lab room herself to get her blood drawn. She still hates it, but has connected with one of the labs assistants which makes it a tiny bit better. 's been asking me about getting an email address. When I have that set up I'll have her email Lexi, as we discussed via email. My thoughts are with you as you start the Remicade - fingers crossed that it will help with both the JRA and UC! nn (, 9, systemic) > > > Hello all, > I haven't posted in a while - mostly a lurker because we are so terrible busy! Since I finally have a moment on the computer I thought I would send a quick recap for new families to this listserv and an update on the past few months. Lexi is 9 and was dx'd with JRA by the wonderful Dr. Hollister at Children's about 5 years ago. She was then soon after diag. w hypothyroidism, and eventually found some relief for the JRA with Enbrel, periodic naproxyn, and then thyroid meds. She had her ups and downs through the years with lots of illness (swine flu, flares, fungal infections in her throat d/t inhaled steroids for asthma, etc.) For the past year she has had trouble with what we thought was constipation - she would spend sometimes 40 min. in the bathroom both at home and at school several times a day and in the eves. She occasionally complained of her tummy hurting, but nothing that was emergent, so we stayed the course. We began giving her Miralax last Spring/.Summer, and then in about Aug. I began noticing that she was having blood in her stool, and by Sept. I noticed a few large blood clots in the toilet in the eves. The discomfort that she reported never got worse, so her ped increased her dose of Miralax and said to start giving her mineral oil. The blood decreased temporarily but when the oil was stopped, the blood increased again. After battling the ped I finally got her into a GI doc who, upon exam, said they felt something was wrong. She had to have a colonoscopy in mid-Dec., and they found bleeding ulcers through the first third of her colon. Now, after biopsies, 4 or 5 sets of blood draws and tests, an upper GI and consult with the GI clinic at Chidlresn' they have determined that she has ulcerative colitis that looks as though it has been going on for some time! (Thanks Kaiser Permanente for missing this!!!!!!) The GI dept has her on an oral and rectal steroid, prevacid to help alleviate the side effects of the steroid, and a pain med for temporary use. They consulted with Dr. Hollister and they have decided to put Lexi on Remicade infusions which will hopefully take care of both her JRA (and take the place of Enbrel) and the ulcerative colitis. This scares me because she is VERY needle phobic - she was already in the past and now with everything she has had to endure lately she has become even more needle phobic! They assure me that by working with a psychologist and child life dept at Childrens' they can help her through these infusions, but I am still worried. Anyone had any luck with specific ways to help a child deal with stuff like this? We put the lidocaine on her arm before the last 2 blood draws/shots and it's not helped from the panic standpoint. Anyone else have a young child on Remicade and how have they responded? Pros/ Cons? I know you all have been a wealth of knowledge in the past and I am hopeful that some families will have some good info for us. Thanks!!!! > and Lexi in Arvada > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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