Guest guest Posted October 18, 2008 Report Share Posted October 18, 2008 So glad to hear that Audrey got a good report! ;-) (Aundrea 13 fibromyalgia) > > We visited with the eye doctor yesterday, and the Remicade is working! He said Audrey's eye looks great, and we are to start tapering the eye drops. We go in for our next infusion tomorrow, and then again in 4 weeks, and hopefully we'll be able to stay at 8 weeks. We see her regular eye doc again in a month. > > D > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Hi ! I just want you to know that I know exactly how you are feeling about the eye appt. After several appt's and being completely shocked that Grant still had or had even more inflammation in his eyes, I have learned to not expect anything because then I won't be disappointed. Before each appt. now, I will go through every possible scenario that I can think of just so I am prepared for what the opth is going to say. I sure hope that with the new meds concoction that her eye inflammation will go down quickly. & Grant (11, PsA/Uveitis) > > > Today was Audrey's optho and rheumy visit. She has had her first 3 doses of Remicade, and her sed rate came right down from 22 to 5. Her eyes seemed to be doing better at her last visit with the optho last month, just after her 2nd dose of Remicade. So today we went for the appointment and he asked how many times a day are you putting the drops in her right eye? And I said uh, none, because all the inflammation has been in her left eye. He then said that she is at a 2+ in her right eye, and still a trace in her left eye. So we are to start drops in her right eye and continue in her left. And this is after 3 doses of Remicade. Her joints have improved, but her eyes have gotten worse. > > So the rheumy (who it was our last visit with because of him MOVING) after talking with the optho, has increased her mtx to .6 cc weekly, and upped the Remicade to every 4 weeks instead of every 8 weeks. We go back and see the optho in 4 weeks and her new rheumy in 8 weeks. I cried during the whole appointment. I gave him a framed picture of him and Audrey at her last visit, as well as a picture I took of just her. I have his e-mail addy, and we're going to keep in touch. I also wrote him a nice thank you letter, and told him that I feel like I'm losing an ally in her battle, and thanked him for taking such good care of my baby girl for so long. > > So it's been a very difficult day. I was so expecting to hear that her eyes looked great, and I'm disappointed that she's not responding as well as we had thought. I'm also very sad that our favorite Dr. P is moving. It's like I told him - we've seen him more than any of her other doctors, and so I feel like he's a part of our family. > > D. > _________________________________________________________________ > Windows Live Hotmail now works up to 70% faster. > http://windowslive.com/Explore/Hotmail? ocid=TXT_TAGLM_WL_hotmail_acq_faster_112008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Goood grief!! I've only heard of that condition on television... as a joke! Urgh!!!! Good thing you were helping with socks huh!! Huggggs for Audry! Hope they don't hurt!! =( Hope she gets well real soon .. Hugs for mom too (((( ))))) Issadora On Sat, Jan 17, 2009 at 3:28 PM, son <newmom2003@...>wrote: > > We had Audrey in the ER this morning. I was trying to hurry her up this > morning, and went to put on her socks, and realized that her feet were > covered in blisters. Most of them were pretty good sized, and they were on > the top and the bottom of her feet. So I thought okay, maybe her shoes are > too tight with the new orthotics in them. Then I started looking closer, > and they are on her hands too. I paged the rheumy on call, and he wasn't > sure what was going on. He said it's not a normal reaction to the remicade. > but he wanted to see her up in the ER. So we go flying up to the ER, and > they take a look at her and then page the rheumy on call. He comes in and > looks at her, looks in her mouth, and sees more of the blisters there. > Guess what she has? Hand foot and mouth disease. The blisters are so much > bigger and more numerous on her because she's immuse suppressed. Seriously, > I counted 20 blisters on her feet. So we're sort of in quarantine for now. > Luckily I have Monday off. > > D. > mom to Audrey > _________________________________________________________________ > Windows Live™: Keep your life in sync. > http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t1_allup_explore_012009 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Yesterday was Audrey's optho and rheumy appointments. According to the optho, she still has a little bit of inflammation in her left eye (going on since October when it started in her left eye). So we are still on the Acular eye drops twice a day and the pred forte once a day. She also has had a dramatic change in her vision, so we got a new prescription for glasses. As for the rheumy, he's going to talk to the optho and see if he needs to increase the strength of the Remicade to try and bring this last little bit of inflammation under control. Audrey's also missed a couple of days of school because she was complaining that her feet hurt, and the sitter has noticed quite a bit of swelling on the ball of her feet. So he's wondering if arthur has gone into the metatarsal joints of her left foot. She also most definitely has the sausage toes going on again. Other than that, she's doing pretty well. I need to vent a minute. Why can't arthur just go away for a little while! For heaven's sake, Audrey's only 6 years old! She's on more medications than she is old! She's on 7 different medications at the age of 6 to control this stupid arthritis. We've been battling constantly since she was 13 months old - that's over a 5 year battle now. It makes me wonder if we will ever have a quiet period with her. She's been through so much at such a young age. She told me the other day that she doesn't like getting poked, but knows she has to do it. How sad is that? I'm tired of fighting the battle sometimes. We've had stormy rainy weather here for almost 2 weeks now, raining every day. It's been he(* on her. My sweet little girl has been the drama queen with crying and over the top emotions. I know there's always hope for a remission, but at this exact moment, I'm not feeling very hopeful for one. It's been a long battle for her - one I'm not sure we're going to ever completely win. D. mom to Audrey trying to see her daughter as an arthritis SURVIVOR rather than an arthritis VICTIM. _________________________________________________________________ Insert movie times and more without leaving Hotmail®. http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_Q\ uickAdd_062009 Quote Link to comment Share on other sites More sharing options...
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