Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Hi all, I am new to this group. I am not on the computer on a regular basis but my daughter was just recently diagnosed with the uveitis because of the JRA. I really don't understand what this uveitis is. She had it active in her eyes in one visit then quiet the next. Just recently they reduced her drops and now we have to go to the doctors tomorrow because she woke up the other night yelling her eyes hurt.What is this all about. Somedays I just don't think I can take all this. (my daughter) and my husband and I have been doing this JRA since about 18monts 2 years old. It just seems to stay the same but never goes away. Now it affects her eyes. Just getting stressed it is nice to know that there are others out there dealing with the same thing. We are from a small town in Pa and not many here know about this stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Hello! Welcome to the group. I can completely relate to your frustration with all of this. My son, Grant, has uveitis too. When he was first dx with this about 18 months ago, I read everything that I could get my hands on about this. It is such a rare disease that even eye doctors don't know enough about it to treat it or in our case even detect it! Uveitis.org is a very informative website that I have found a lot of good info on. Your post, " we have to go to the doctors > tomorrow because she woke up the other night yelling her eyes hurt. " concerns me in the fact that her pain was a couple nights ago? She needs to get to the Opth immediately if she is experiencing eye pain! Waiting 2 days is way too long to wait. I don't mean to scare you but Uveitis can cause blindness if not treated. I also strongly advise you to see a Pediatric Opthamologist and one that has experience with Uveitis. Feel free to ask any questions you may have with this. Best wishes! & Grant (11, PsA/Uveitis) > > Hi all, I am new to this group. I am not on the computer on a regular > basis but my daughter was just recently diagnosed with the uveitis > because of the JRA. I really don't understand what this uveitis is. She > had it active in her eyes in one visit then quiet the next. Just > recently they reduced her drops and now we have to go to the doctors > tomorrow because she woke up the other night yelling her eyes hurt.What > is this all about. Somedays I just don't think I can take all this. > (my daughter) and my husband and I have been doing this JRA > since about 18monts 2 years old. It just seems to stay the same but > never goes away. Now it affects her eyes. Just getting stressed it is > nice to know that there are others out there dealing with the same > thing. We are from a small town in Pa and not many here know about this > stuff. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi, No , you're not rambling ... not at all! You're providing some really great information for all who need to better understand how this condition can affect a child. Thank you, so much, for doing so. These kinds of contributions to the group are what helps set us apart from so many other online information sources. Reading the postings here has taught me so much about JIA-related issues, more than I ever expected to learn and far more than I could have ever learned without this group. I know I'm not the only one who feels that way. Keep sharing ... and Thank You! Aloha, Georgina Uveitis @group s.com <mailto:jra- list%40grou ps.com> Date: Saturday, June 20, 2009, 1:47 PM My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Thank you Georgina for not only that, but all of the time you put into this group to help all of it's members. Aloha to you, too! ' From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > Subject: Uveitis @group s.com <mailto:jra- list%40grou ps.com> Date: Saturday, June 20, 2009, 1:47 PM My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 I have been making a pest of myself phoning to make sure she gets her follow-up appointment that was due on Monday and have managed to get her in for this Thursday so please everyone cross your fingers and toes for us, hoping it's responded to treatment Love xxxxxxxxxxxx From: [mailto: ] On Behalf Of suenkevan Sent: 22 June 2009 23:31 Subject: Re: Uveitis na will go for Remicade again in two weeks, then 4 and will stay at for for awhile until they think she may be in remission. I don't know how long that means. Then they will taper her every 6 to 8 and so on and hope the MTX keeps her in remission. This is the plan so far. ne > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Good luck, !! Sent from my iPhone On Jun 23, 2009, at 2:19 PM, " " <atomicblonde@...> wrote: I have been making a pest of myself phoning to make sure she gets her follow-up appointment that was due on Monday and have managed to get her in for this Thursday so please everyone cross your fingers and toes for us, hoping it's responded to treatment Love xxxxxxxxxxxx From: [mailto: ] On Behalf Of suenkevan Sent: 22 June 2009 23:31 Subject: Re: Uveitis na will go for Remicade again in two weeks, then 4 and will stay at for for awhile until they think she may be in remission. I don't know how long that means. Then they will taper her every 6 to 8 and so on and hope the MTX keeps her in remission. This is the plan so far. ne > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 sending good thoughts to you!!! From: <atomicblonde@...> Subject: RE: Uveitis Date: Tuesday, June 23, 2009, 12:19 PM I have been making a pest of myself phoning to make sure she gets her follow-up appointment that was due on Monday and have managed to get her in for this Thursday so please everyone cross your fingers and toes for us, hoping it's responded to treatment Love xxxxxxxxxxxx From: @group s.com [mailto: @group s.com] On Behalf Of suenkevan Sent: 22 June 2009 23:31 @group s.com Subject: Re: Uveitis na will go for Remicade again in two weeks, then 4 and will stay at for for awhile until they think she may be in remission. I don't know how long that means. Then they will taper her every 6 to 8 and so on and hope the MTX keeps her in remission. This is the plan so far. ne > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
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