Guest guest Posted June 9, 2000 Report Share Posted June 9, 2000 hi D'Lynn how are you and your family doing? my daughter cant take the ibuprofen she is allergic to this but the only thing i know about the ibuprofen make sure you have her eat something before she takes it this helps with stomach irratation i will check on some info for you on this since my daughter has the JRA i had her eye doctor recheck her and her eyes have gotten worser last aug i had them checked and this may rechecked keep the eye doctor appts up with technology now they may have something to help in a year or 2 its amazeing what they do now research sites is also good Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2000 Report Share Posted June 10, 2000 Dear D'Lynn, Welcome to the group, I am sure you will find it very helpful. My daughter, n age 11, was diagnosed last November with systemic JRA, and this sight has been a lifesaver. Somedays you will read lots that will pertain to your situation, and other times not so much. Just stay here though, and you will continue to learn. There are many people online that have young children with pauci or polyarticular arthritis. As you probably know by now, pauci and poly come with more of a risk of eye problems than systemic does. How bad is your daughter's arthritis problems? There are kind of three steps in medication for JRA. The first are NSAID's (non steroidal anti-inflamatory) such as tylenol , motrin, advil, naprosyn, indomethasin, etc. Then there are DMARD's (disease modifying anti rheumatoid drugs), such as plaquenil or the gold standard, methotrexate. Then there are some new drugs, anti tumor necrosis drugs, enbrel or remicade. Some children for various reasons might have steroids thrown in there as well. This is kind of simplistic, but it is a start for you. Whenever we have a doctor's appt. we bring a notebook with all of our questions written out. As the doctor answers them, I just write the answer down. We also keep a diary of n to see any general improvements or changes. We live in Oregon, and we went to the Seattle Children's Hospital twice. They have a very good reputation, and they are extremely aggressive. We decided to stay with the Portland doctor though, it was just more convenient. Which doctor do you see in Seattle? Good luck. >From: " D'Lynn Fair " <FairRDMD@...> >Reply- egroups > egroups >Subject: Hi just found this >Date: Fri, 09 Jun 2000 06:12:21 -0000 > >Hi My Name is D'Lynn, Im new at this computer & Im a little concerned >I havent spoted a spell check. You will all see I need it. I was very >happy to come across this sight in my searching. I have a 21 month >old little girl her name is Devyn we finaly found out she has Pavci >articular JRA. We didnt really now what to ask when they told us. We >have another trip to Seattle Children's Hospital next week. Any >advice would be most welcome. She is on 400mg's of ibipropen. Her >eyes are fine now but the eye Dr said she fits the bill for lossing >her sight.That was all he could tell me.My husband & I are still in a >dais from every thing. Thanks D'Lynn > > >------------------------------------------------------------------------ >Never lose a file again. Protect yourself from accidental deletes, >overwrites, and viruses with @Backup. >Try @Backup it's easy, it's safe, and it's FREE! >Click here to receive 300 MyPoints just for trying @Backup. >1/4936/2/_/524922/_/960531151/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 hi-I am a SAHM (Stay at home mom) with a 2 1/2 yr old daughter with Pauci Jra, also. She was diagnosed in Feb. of this year. We caught it right at the on stage. She had it in the left knee - now on Mother's day, we spotted it in the right ankle. It has been a bumpy road - but this email group is really supportive & they are always willing to answer your questions if you have any. Breanna (my daughter) was diagnosed thru the ER of our wonderful Children's Hospital, here in Little Rock, Arkansas. I took her to her Ped & he sent us right on over. We were really lucky. The first vivst with the Rheu Dr was the following week. We discussed Bre's test that were done in the ER-they took some xrays, blood work & then they did a needle tap to access the fluid in her knee. It was then after all this that they sent us to the Rheu Dr. We were really lucky to catch it at the very beginning. The dr started her on Celebrex 100mg a day - we are now up to 200 mg. HE discussed alot of options as far as treatment, therapy & medications. He explained the diease to us & answered our questions. What really helped me out was that I started a notebook with all the info in it. I would put all my questions to ask him in it as well as his answers. Also, when we started drugs, test that were ran, therpay that was done, etc. I also would keep up with her eating habits, etc. It helps to have all the info on hand for the next visit or even if you have to cal him on the phone. Breanna has already seen her opthamologist twice - we go every 3 months. Her first visit he dilated her eyes & checked her out. This last visit took all of 5 minutes to look into her eyes & check for the Iritis. I know how you feel about the eyesight - I was freaked out the she could lose her sight - It is impossible to grasp that the less joints are involved the greater the chance. When he found out that Bre had a second joint imflammed, he told my mother (she is a Nurse at Baptist Eye Center here in LittleRock & He works with her sometimes & always checks on Bre) that the more joints that become affected the less her chance of Iritis. I know this may sound cruel to you - But the way I look at it, I would rather she have JRA then go blind. I know that all will be okday for your child. The Lord will take care of it all. Just lift it all up to the Lord. I will keep you in my prayers. I know this may not have been much help. But it helps to know that you are not alone & people do care. If there is anything I can do for you or just keep you on my prayer list. Please let me know. May God continue to bless you & your family. Blessings in Him, Kim Wolfe SAHM of 2 1/2 yr old Breanna Paui. JRA Hi just found this Hi My Name is D'Lynn, Im new at this computer & Im a little concerned I havent spoted a spell check. You will all see I need it. I was very happy to come across this sight in my searching. I have a 21 month old little girl her name is Devyn we finaly found out she has Pavci articular JRA. We didnt really now what to ask when they told us. We have another trip to Seattle Children's Hospital next week. Any advice would be most welcome. She is on 400mg's of ibipropen. Her eyes are fine now but the eye Dr said she fits the bill for lossing her sight.That was all he could tell me.My husband & I are still in a dais from every thing. Thanks D'Lynn For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
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