Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Hi Patti i am Robbin i am 37 years old live in Atlanta Ga married 24 years have a son 22 years old and whos 13 years old glad to have you in the group hows your son doing? you are right some are young how are you and son handleing the school ? do you have any more kids? where do you live? since your new and a few others are also heres a chat group http://jraworld.arthritisinsight.com/ this is a nice place just look for chat and click if you have any questions please feel free to ask one of us will know something about it Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Welcome to the group!! You will find lots of info here and awesome support. My daughter is 6 and has systemic jra and things are tough sometimes, but you keep going anyway. Best of luck with . Keep us posted and we will keep you in our prayers. Tracey this is new to us > Hello, > My 17 year old son, , has just been diagnosed with Systemic > JRA. At first he was given Naprocyn - which didn't work. Now he's > on Pred. He's only been on it since Tues. night, 10/24. It's > amazing the difference already!! > > I've read some of your email. You children are so young! You > parents must be pretty young too I can't even imagine what > you're going through. At least can tell us what's happening to > him. How I feel for you and your little ones!! > > Thank you for being here! This is all so new to us. I needed a > support group. Any advise you can offer is greatly appreciated. > > Patti > > > > To receive JRA-related news and research emails, please consider > joining the JRA-info list. To sign up, visit: jra-info > If you subscribe in the digest mode you will receive no more than one email per day. > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 --It is so nice to here from so many people going through the same thing. My daughter is 2 1/2 and has had JRA for 1 yr. I thought I was a pro until she came down with uvitis(eye inflammation) yesterday. I just want to stress to everyone to make sure they go to the ped opthamologist as often as they are told to because you cant see this coming. Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Patti No matter how old your child is it is hard, Mt husbands sister was 24 and diagnosed with Lupus, My mother-in law felt the same pain. Good Luck with your son. SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Patti, My daughter is 3 years old. We have been diagnosed for a year with pauciarticular JRA. Thank God it's only in 1 knee. Welcome to the group. you will find alot of info and support at this site. I am so glad is feeling better on the prednisone. Please keep us posted. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Patti, My daughter, Alana, was diagnosed with JRA last year. She had a very tough year but she's doing excellent now. In fact, she came home from the gym last night and told me she did half of an adult kick boxing class. From not being able to basically get from the couch to her bed last winter this is quite an accomplishment. Maybe would like to correspond with Alana. He can email her at emmalab1@... Just tell him to put JRA or something that will stop her from deleting the message since aol sends so much junk mail to these kids. This may be just what they both need. Bonnie Regional Director, PHD Products http://phdproducts.com mailto:bonnie@... 800-863-3403 this is new to us >Hello, >My 17 year old son, , has just been diagnosed with Systemic >JRA. At first he was given Naprocyn - which didn't work. Now he's >on Pred. He's only been on it since Tues. night, 10/24. It's >amazing the difference already!! > >I've read some of your email. You children are so young! You >parents must be pretty young too I can't even imagine what >you're going through. At least can tell us what's happening to >him. How I feel for you and your little ones!! > >Thank you for being here! This is all so new to us. I needed a >support group. Any advise you can offer is greatly appreciated. > >Patti > > > >To receive JRA-related news and research emails, please consider >joining the JRA-info list. To sign up, visit: jra-info >If you subscribe in the digest mode you will receive no more than one email per day. > >For links to websites with JRA info please visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Patti i am glad you found this group we have been wondering about this beeing inherited or enviromental the reason the kids have gotten this i think your one that has the MS and JRA and LUPUS as a gene jumping from family we have also have some that their child are the only one then some that have family members with arthritis as with life its unpredictable and the flares come and go but we as parents have to show the child it aint the end of the world for them but just a obstacle we get over have you done a 504 plan on your son yet? anytime you want to chat with any of us let us know the JRA chat at JRA world is empty alot we do need to use this room for the group i will talk with about that use i go into the main chat because no ones in the JRA chat yall have a great weekend Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi Bonnie and everyone that responded to my letter, I am married to Steve and we have two boys. , 17 and Nick, 14. We live in Weston (almost central) Wisc. And I have to say, this has turned our world upside down - as I'm sure it has done to all of you. started back at school last week (he's a junior) after missing almost 4 weeks. His school counselor and teachers have been wonderful! He's going from 8-11:30 a.m. and one course has become a home-study course. Gym has been dropped this semester and he'll try again next semester. plays football, varsity and jr. varsity. Although he's done for the season (their varisity team is undefeated so far!!!), he can still sit with the team during the games. In fact, the day we came home from the hospital, DCE (his school) played another team that was undeated. DCE won the game! Everyone on the team signed the winning ball and gave it to !!! They brought it over to him on his 17th birthday! His coach has been so supportive We've been so blessed! It's great to know this can be treated with meds. I myself was diagnosed with MS in 1996, and have been in remission for all but about the first 6 months. My cousin has lupas and my uncle had JRA as a child and outgrow it completely! Apparently, it's in the genes. Any thoughts on that? Thanks again! I needed your support more than I realized! Bless you all, Patti ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi Bonnie, Thanks for you response! I'm guessing Alana is about 14/15. I'd love to have and Alana email each other. I did suggest it to , but he's very shy. Maybe if she would email him first? His address is c5-r@.... I appreciate your help - thanks so much. Patti ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi Patti, Welcome I'm sorry to hear about your son. I know how hard it is when you're facing a situation like this but I'm glad that you found our group. You'll meet many wonderful people here, who are always willing to share their wealth of knowledge. They say that experience is the best teacher. Though each individual case is different, many of us have been through similar situations. Hearing about others' experiences can often be very helpful. If you ever have any questions or concerns feel free to mention them here and you'll most likely receive some very good advice from those who have 'been there' before. Take care, Georgina AplBlssm@... wrote: > > In a message dated 10/27/2000 5:30:01 PM Pacific Daylight Time, > Pattijgd@... writes: > > > Hello, > > My 17 year old son, , has just been diagnosed with Systemic > > JRA. At first he was given Naprocyn - which didn't work. Now he's > > on Pred. He's only been on it since Tues. night, 10/24. It's > > amazing the difference already!! > > > HI Patti, > My daughter is 17 1/2. She has Poly JRA. It is a challange, but keep going. > How is youe son? I am not sure who this is harder on, us or them. Take care > > Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Patti, My daughter is 10 yrs. old with polyarticular jra. She was dxed 16 months ago. I might be young in age (30), but I feel every bit of 65 retiring ago. Hope this group is a big help to you like it has been to us. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 In a message dated 10/27/2000 5:30:01 PM Pacific Daylight Time, Pattijgd@... writes: > Hello, > My 17 year old son, , has just been diagnosed with Systemic > JRA. At first he was given Naprocyn - which didn't work. Now he's > on Pred. He's only been on it since Tues. night, 10/24. It's > amazing the difference already!! > HI Patti, My daughter is 17 1/2. She has Poly JRA. It is a challange, but keep going. How is youe son? I am not sure who this is harder on, us or them. Take care Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Patti, I know a 17 year old boy that has had jra his whole life, i am sure when your son is ready to talk about, i can put them in contact with each other, let me know AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 That's not too much, in my humble opinion, I have been on that amt. before to treat my asthma. Are you taking to a pediatric rheumatologist?? A lot of time, adults think that our kids are on way to many drugs. I have been down right accused of being a neglectful parent for allowing them to put my child on the amount of drugs she has been on. It will get easier to deal with all of this, honest. AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Thank you everyone who has responded! I really appreciate hearing what everyone has to say - and of all of your experiences. I do have some questions. What is a 504 plan? Also, I went into an arthritis chat room last night and someone asked how much pred. is getting. He's getting 60 mg/day. A man responded that he was very shocked... he said this is an extremely dangerous amount - way too high. Also that I'd better get another doctor. Well, of course now I'm concerned and somewhat worried. What should I do? Any suggestions? Is this too much? Your thoughts would be greatly appreciated! Patti ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Thanks AJ! I'm in a nervous state right now and you must be able to sense that. You told me exactly what I needed to hear. If you've been on 60 mg's of pred. before, then I feel better. I'm easily confused because this disease is new to me, the meds are new to me, and I'm hearing words I've never heard before. Does it take a long time to get down to say, 30 mg's/day? How long do you usually stay at 60 mg? What side effects might I expect? Of course, everyone is different. already experiences loss of sleep, and he's ok with that. Is there something I should be looking for to determine if he's becoming anemic? Thanks for your help! Patti ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Patti, When I am on that much pred I cant sleep either. You can pretty much expect mood swings, both from the drug and from the lack of sleep, just because your not tired doesn't mean your body doesn't need that sleep, just to rest your brain. One of the things that I learned is to just lay down and shut my eyes when I am supposed to be sleeping. It seems to help. There are other side effects as well, prednisone is a great and horrible drug all in one. It makes you feel good, but some of the side effects aren't so wonderful. One of them is the " moon face " chubby cheeks, that will happen soon with the dose he is on too. Tell him to try and eat good food not junk, because his appetite is going to grow and grow and grow. A good place to check out medications and side effects is www.rxlist.com. If you have any questions, please just ask. Oh yeah you did ask one I didn't answer yet, it is a hard one to answer as there isn't one answer it is different for everyone :-( It would depend a lot on how is doing. If he is becoming anemic, he would probably get dark circles under his eyes, his gums and nail beds would become pale. Where are you from?? AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Patti- No parent wants to see a child, no matter his or her age, have to deal with such a disease. Obviously, this has been no picnic for you. Best wishes to you and your son. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi Patti and welcome to the group. We have a good bit in common, my sister has MS, chronic progressive, my 9 y/o son-systemic jra and my 7 y/o daughter-polyarticular jra, I have dermatomyocitis(in remission) and my niece (my husband's daughter) has lupus. I agree- there is a predisposed disposition to connective tissue diseases or it may be environmental. The only thing is there is no blood relation between my sister and my husbands family and they have never lived closer than 65 miles of each other. My best to you and your family. Sharon > Hi Bonnie and everyone that responded to my letter, > > I am married to Steve and we have two boys. , 17 and Nick, 14. We > live in Weston (almost central) Wisc. And I have to say, this has turned > our world upside down - as I'm sure it has done to all of you. > > started back at school last week (he's a junior) after missing > almost 4 weeks. His school counselor and teachers have been wonderful! > He's going from 8-11:30 a.m. and one course has become a home-study > course. Gym has been dropped this semester and he'll try again next > semester. > > plays football, varsity and jr. varsity. Although he's done for > the season (their varisity team is undefeated so far!!!), he can still > sit with the team during the games. In fact, the day we came home from > the hospital, DCE (his school) played another team that was undeated. > DCE won the game! Everyone on the team signed the winning ball and gave > it to !!! They brought it over to him on his 17th birthday! His > coach has been so supportive > > We've been so blessed! It's great to know this can be treated with meds. > I myself was diagnosed with MS in 1996, and have been in remission for > all but about the first 6 months. My cousin has lupas and my uncle had > JRA as a child and outgrow it completely! Apparently, it's in the > genes. Any thoughts on that? > > Thanks again! I needed your support more than I realized! > Bless you all, Patti > ________________________________________________________________ > YOU'RE PAYING TOO MUCH FOR THE INTERNET! > Juno now offers FREE Internet Access! > Try it today - there's no risk! For your FREE software, visit: > http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Patti melissa dont take the pred she use to for her asthma but so fr shes on voltaren that does sound high you need to call the doctor and ask about the high dose also does he have mood swings? i think this is one of the side effects of this dose i would get a second opinion if your worried also call your sons pediatrician and ask questions Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Patti you asked about 504 plan this is set for the kids in school with disabilities most of the group has a 504 set up this is a federal plan and helps the child to adapt to school like carrying books elevator pass PE missed days tardies extra set of books at home and also a homebound teacher its really helpful just ask your childs counselor about getting one for your child also another place to look is call your local arthritis chapter 1-800-283-7800 ask for anything they have on JRA they will be glad to send you pamplets and ask about AJAO and kids get arthritis too this is great and very helpful attend anything on this i was terrified when i found out about melissa but i am understanding more and more and melissa is understanding that shes not alone a good support team helps Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 hi, 60mg is a lot and i have never heard of that amount being used to treat jra by itself. i just came off 60mg myself after having jra just about my whole life(i am now 23), but i was only on that amount to hopefully put a kidney disease in remission. get a second opinion. goodluck, brandy _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Sharon, you're right, there are some similarities. I hope your sister is doing alright. Too bad it's progressive. I've seen that in some of my friends. I'm very fortunate to be in remission. How do you handle it all? Yourself, and both of your children! Wow - my hat is off to you!! You go girl Patti ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 In a message dated 10/29/2000 9:25:20 AM Pacific Standard Time, Pattijgd@... writes: > What side effects might I expect? Of course, everyone is > different. already experiences loss of sleep, and he's ok with > that. Is there something I should be looking for to determine if he's > becoming anemic? Weight gain for one, prednisone can eat away at the bones. He may want to take a calcium suppliment to help. Sleep lossis not good. I notice ( my 17 year old ) seems to have more flare ups if she is tired. Lots of prayer to you. Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 Patty, she'll be 15 next week, she's in 10th grade. I'll see if she'll email him and will let you know what she thinks. Bonnie Regional Director, PHD Products http://phdproducts.com mailto:bonnie@... 800-863-3403 Re: this is new to us >Hi Bonnie, > >Thanks for you response! I'm guessing Alana is about 14/15. I'd love to >have and Alana email each other. I did suggest it to , but >he's very shy. Maybe if she would email him first? His address is >c5-r@.... > >I appreciate your help - thanks so much. >Patti >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. > > >To receive JRA-related news and research emails, please consider >joining the JRA-info list. To sign up, visit: jra-info >If you subscribe in the digest mode you will receive no more than one email per day. > >For links to websites with JRA info please visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.