Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta I want to tell you I am so sorry that your daughter might have this. I am saying this cause I want to deny it.myself. I can not stand the thought of one of us having a child with this. As you know, some of us have mild disease. I am hoping this is the case and that she can return to full time dreams come true!! your friend Liz **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta I want to tell you I am so sorry that your daughter might have this. I am saying this cause I want to deny it.myself. I can not stand the thought of one of us having a child with this. As you know, some of us have mild disease. I am hoping this is the case and that she can return to full time dreams come true!! your friend Liz **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta: I'm so sorry your daughter is going through this. Other than the prednisone is she taking anything else? Personally, I'm constantly watching my son (he's 15 years old) for signs though I've been assured AOSD doesn't run in families. Although a cousin of mine had JRA when she was a child and we're only 22 years apart in age, and though we're cousins we are three times removed from one another. To me, it's still family. I'm in contact with a college student that was recently diagnosed and he's finding it difficult to function at school. So much so that he's taking next semester " off " and will be doing classes online from home. You're daughter is very brave if she's planning on continuing her education at school. I can only imagine how difficult that must be. Does she also belong with the family here? If not, please urge her to join us so she doesn't feel isolated. Now tell me, how are you doing? Have you pain? Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta: I'm so sorry your daughter is going through this. Other than the prednisone is she taking anything else? Personally, I'm constantly watching my son (he's 15 years old) for signs though I've been assured AOSD doesn't run in families. Although a cousin of mine had JRA when she was a child and we're only 22 years apart in age, and though we're cousins we are three times removed from one another. To me, it's still family. I'm in contact with a college student that was recently diagnosed and he's finding it difficult to function at school. So much so that he's taking next semester " off " and will be doing classes online from home. You're daughter is very brave if she's planning on continuing her education at school. I can only imagine how difficult that must be. Does she also belong with the family here? If not, please urge her to join us so she doesn't feel isolated. Now tell me, how are you doing? Have you pain? Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi Aleeta and Ellen, I generally just lurk on this list, but wanted to be sure to reach out, as I was diagnosed when I was twelve. Aleeta, if your daughter needs someone to talk to, please let her know she can reach out to me, or as Ellen suggests, joins this group. I know when I was ill, I didnt want to reach out to anyone, and a kind person who had been through this wrote me a letter (before the days of email!) which was very helpful. If you would like me to do something similar, I would be more than happy to do so. Take Care, Ken Subject: Re: My daughter's diagnosis To: Stillsdisease Date: Friday, October 24, 2008, 7:05 AM Aleeta: I'm so sorry your daughter is going through this. Other than the prednisone is she taking anything else? Personally, I'm constantly watching my son (he's 15 years old) for signs though I've been assured AOSD doesn't run in families. Although a cousin of mine had JRA when she was a child and we're only 22 years apart in age, and though we're cousins we are three times removed from one another. To me, it's still family. I'm in contact with a college student that was recently diagnosed and he's finding it difficult to function at school. So much so that he's taking next semester " off " and will be doing classes online from home. You're daughter is very brave if she's planning on continuing her education at school. I can only imagine how difficult that must be. Does she also belong with the family here? If not, please urge her to join us so she doesn't feel isolated. Now tell me, how are you doing? Have you pain? Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi Aleeta and Ellen, I generally just lurk on this list, but wanted to be sure to reach out, as I was diagnosed when I was twelve. Aleeta, if your daughter needs someone to talk to, please let her know she can reach out to me, or as Ellen suggests, joins this group. I know when I was ill, I didnt want to reach out to anyone, and a kind person who had been through this wrote me a letter (before the days of email!) which was very helpful. If you would like me to do something similar, I would be more than happy to do so. Take Care, Ken Subject: Re: My daughter's diagnosis To: Stillsdisease Date: Friday, October 24, 2008, 7:05 AM Aleeta: I'm so sorry your daughter is going through this. Other than the prednisone is she taking anything else? Personally, I'm constantly watching my son (he's 15 years old) for signs though I've been assured AOSD doesn't run in families. Although a cousin of mine had JRA when she was a child and we're only 22 years apart in age, and though we're cousins we are three times removed from one another. To me, it's still family. I'm in contact with a college student that was recently diagnosed and he's finding it difficult to function at school. So much so that he's taking next semester " off " and will be doing classes online from home. You're daughter is very brave if she's planning on continuing her education at school. I can only imagine how difficult that must be. Does she also belong with the family here? If not, please urge her to join us so she doesn't feel isolated. Now tell me, how are you doing? Have you pain? Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Ellen & Ken, Kyna isn't on anything for the arthritis yet. They want her to wean off the prednisone first. It is masking most of her symptoms so they want to evaluate her more first. She has started on Lyrica and a muscle relaxer for sleeping to treat the fibro. That has been helping a lot. She is having some rebound pain from reducing the prednisone but says it's not too bad yet. Her Rheumatologist wanted her to go cold turkey on it. I pitched a fit as I know the rebound pain as I've been on prednisone for 18 years now. So she's gone from 30 mg to 5 and holding for now. She's only been on it for 2 months. Kyna wants to hang in there with her college. She considered taking time off to get better but she's so close to graduating that she wants to stay with it. She also works full time so it's been hard. But her college is really great. They have disability services that have helped her so much. She got a handicapped sticker for her car so she can park close to her classes on days it hurts to walk. They also provide note takers in case she can't get to class. Her professors really like her so they are understanding with her. She's had most of them for several classes over the years. And she sees a wonderful counselor who is going to start an on campus support group. And with everything she has kept on the Dean's List every semester. As for me, I'm still doing good. I was worried a while back that my remission was ending but so far so good. I'm almost to 4 years of remission now. But I'm also up to 4 years of Enbrel so that worries me too. I know Enbrel usually doesn't work over 5 years. I'm still working part time as a housekeeper. I'm one of these strange people who enjoy cleaning house. So I get paid for it now :-) Aleeta Re: My daughter's diagnosis Aleeta: .. <http://geo.yahoo.com/serv?s=97359714/grpId=2940385/grpspId=1705061589/msgId =66416/stime=1224849910/nc1=5191947/nc2=5191951/nc3=5170418> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Ellen & Ken, Kyna isn't on anything for the arthritis yet. They want her to wean off the prednisone first. It is masking most of her symptoms so they want to evaluate her more first. She has started on Lyrica and a muscle relaxer for sleeping to treat the fibro. That has been helping a lot. She is having some rebound pain from reducing the prednisone but says it's not too bad yet. Her Rheumatologist wanted her to go cold turkey on it. I pitched a fit as I know the rebound pain as I've been on prednisone for 18 years now. So she's gone from 30 mg to 5 and holding for now. She's only been on it for 2 months. Kyna wants to hang in there with her college. She considered taking time off to get better but she's so close to graduating that she wants to stay with it. She also works full time so it's been hard. But her college is really great. They have disability services that have helped her so much. She got a handicapped sticker for her car so she can park close to her classes on days it hurts to walk. They also provide note takers in case she can't get to class. Her professors really like her so they are understanding with her. She's had most of them for several classes over the years. And she sees a wonderful counselor who is going to start an on campus support group. And with everything she has kept on the Dean's List every semester. As for me, I'm still doing good. I was worried a while back that my remission was ending but so far so good. I'm almost to 4 years of remission now. But I'm also up to 4 years of Enbrel so that worries me too. I know Enbrel usually doesn't work over 5 years. I'm still working part time as a housekeeper. I'm one of these strange people who enjoy cleaning house. So I get paid for it now :-) Aleeta Re: My daughter's diagnosis Aleeta: .. <http://geo.yahoo.com/serv?s=97359714/grpId=2940385/grpspId=1705061589/msgId =66416/stime=1224849910/nc1=5191947/nc2=5191951/nc3=5170418> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta darling, You can come clean my house anytime you wish! Of all the things I had to stop doing that was one of them, now I can only clean one room per day and it takes all day. Of course that doesn't include laundry and dishes which is a daily battle in itself. Although, my son has taken to helping me with the laundry from time to time but still can't manage to put a dish in the dishwasher. Hey! At least it makes it to the sink! I don't know if you've been reading the posts but I've been put on a very " old " medication which seems to be working for me. It's called colchicine. It was used for gout patients years and years ago. I didn't do well on MTX nor on Enbrel (boy are you lucky) and couldn't lower the dose of prednisone due to a constant small but annoying flare. With colchicine I've finally lowered my prednisone by 5 mgs (I'm now on 15 mgs a day) and plan on lowering it again next week. Yes, there's break through pain but it's manageable. It also seems to be helping my fibromyalgia and I'm finally sleeping. I'm only telling you this because it's another option to talk with the doctor about. Please excuse me, my husband is on the phone. It seems the stock market has fallen and perhaps crashed. When I know more I'll let you know. Oh! And National City Bank has been bought by PNC! This is NOT good news for us. I'll tell you more later on. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta darling, You can come clean my house anytime you wish! Of all the things I had to stop doing that was one of them, now I can only clean one room per day and it takes all day. Of course that doesn't include laundry and dishes which is a daily battle in itself. Although, my son has taken to helping me with the laundry from time to time but still can't manage to put a dish in the dishwasher. Hey! At least it makes it to the sink! I don't know if you've been reading the posts but I've been put on a very " old " medication which seems to be working for me. It's called colchicine. It was used for gout patients years and years ago. I didn't do well on MTX nor on Enbrel (boy are you lucky) and couldn't lower the dose of prednisone due to a constant small but annoying flare. With colchicine I've finally lowered my prednisone by 5 mgs (I'm now on 15 mgs a day) and plan on lowering it again next week. Yes, there's break through pain but it's manageable. It also seems to be helping my fibromyalgia and I'm finally sleeping. I'm only telling you this because it's another option to talk with the doctor about. Please excuse me, my husband is on the phone. It seems the stock market has fallen and perhaps crashed. When I know more I'll let you know. Oh! And National City Bank has been bought by PNC! This is NOT good news for us. I'll tell you more later on. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta I as most have said am sorry your child has this but take head here some of us are not as bad as others and some have also enjoyed remissions also and some never have sad as that is . this stills thing is so different for each of us it is unreal and the only thing that is the same for all of us is we have it LOL as for a normal life . well we all have normal life's it all depends on what you call normal. for me pre stills most would not have called it normal but an over active killer life meaning I was doing to much for my body to stay together with LOl. any hoot I now live an almost normal life . early retirement ( okay forced from stills) but I still get to do most things I loved before just not as often .. as for school and all the young people things the big deal is learning to listion to your body and resting when it tell you to and not over pushing your self all the time. Keep your mind active mentally and do not dwell on the stills part .I know when i do that I get down bad . Take on line classes that Way you do not have to be up and running every day of the week and can work more or less with your body's sccedrule. I do not understand the going cold trucky with prednisone. I have always been told you never do that. I have been told you always slowly taper it down because of the way it can stop your body from making it's own steroids. it sounds like the dose she is at now is just that a taped er down dose and some ever taper that down in step still more . I was on it for over 3 years and tape rd off of it over months and months with a few set backs but finally got off of it and am now fighting to stay off of it and so far have done just that . it will as you said mask a lot of things and it did just that for my self . now that I am off of it fully it has been a bit essayer to work with each thing and for myself that has been a good thing as they are some what getting better to control. so good luck and there are a few other young people out here that deal with stills and trying to also go to collage and or start there young adult life's your best and hugs to you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Aleeta I as most have said am sorry your child has this but take head here some of us are not as bad as others and some have also enjoyed remissions also and some never have sad as that is . this stills thing is so different for each of us it is unreal and the only thing that is the same for all of us is we have it LOL as for a normal life . well we all have normal life's it all depends on what you call normal. for me pre stills most would not have called it normal but an over active killer life meaning I was doing to much for my body to stay together with LOl. any hoot I now live an almost normal life . early retirement ( okay forced from stills) but I still get to do most things I loved before just not as often .. as for school and all the young people things the big deal is learning to listion to your body and resting when it tell you to and not over pushing your self all the time. Keep your mind active mentally and do not dwell on the stills part .I know when i do that I get down bad . Take on line classes that Way you do not have to be up and running every day of the week and can work more or less with your body's sccedrule. I do not understand the going cold trucky with prednisone. I have always been told you never do that. I have been told you always slowly taper it down because of the way it can stop your body from making it's own steroids. it sounds like the dose she is at now is just that a taped er down dose and some ever taper that down in step still more . I was on it for over 3 years and tape rd off of it over months and months with a few set backs but finally got off of it and am now fighting to stay off of it and so far have done just that . it will as you said mask a lot of things and it did just that for my self . now that I am off of it fully it has been a bit essayer to work with each thing and for myself that has been a good thing as they are some what getting better to control. so good luck and there are a few other young people out here that deal with stills and trying to also go to collage and or start there young adult life's your best and hugs to you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 We met with the pediatric rheumatologist yesterday and she is a classic case of psoriatic arthritis. It is attacking the tendons which attach to her fingers and her toes. She started Voltaren last evening and if this does not help, will move to DMARDs in May. I am soooo thankful we are not dealing with RA but psoriatic is bad enough for a kid who is 15 years old..... *sigh* ©x© Kami ©x© Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 I'm so sorry to hear that your daughter has psoriatic arthritis, Kami. At least she will get excellent support and understanding from you. Not an MD On Wed, Feb 11, 2009 at 6:10 AM, ~Kami~ <kamilleon@...> wrote: > We met with the pediatric rheumatologist yesterday and she is a classic case > of psoriatic arthritis. It is attacking the tendons which attach to her > fingers and her toes. She started Voltaren last evening and if this does not > help, will move to DMARDs in May. > > I am soooo thankful we are not dealing with RA but psoriatic is bad enough > for a kid who is 15 years old..... *sigh* > > ©x© Kami ©x© Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Hi Kami: I was so sorry to read that your daughter has Psoriatic Arthritis. I hope the meds do help her, and she will be feeling a little better soon. I know how much it hurts you to see your child suffer. I pray she will do better as the meds get into her system. Lots of hugs, Barbara > > We met with the pediatric rheumatologist yesterday and she is a classic case of psoriatic arthritis. It is attacking the tendons which attach to her fingers and her toes. She started Voltaren last evening and if this does not help, will move to DMARDs in May. > > I am soooo thankful we are not dealing with RA but psoriatic is bad enough for a kid who is 15 years old..... *sigh* > > > ©x© Kami ©x© > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Sorry to hear about your daughter's diagnosis Kami. I hope that they find a combination of meds that will work for her. Being a teenager is hard enough without having to deal with psoriatic arthritis. Lori http://home.comcast.net/~queenstitcher/ http://stitchingqueen.multiply.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 We are testing my 8yr old for RA. I have RA/SLE and she is showing classic signs!!! It is a parents worse nightmare and to know it came from me!!!!!! Atleast she will be treated early; unlike me. I waited for my doctor to stop telling me it is my head for 14yrs!!!! Sent via BlackBerry by AT & T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 I know how you feel, and it is so hard to raise a child with a serious disease. I have been through that with my daughter, and I know how guilty I felt for passing on to her a serious disease. Thank God it was not my RA. You will be a kind, compasionate mother, and will know exactly how she is feeling. You will of great comfort to her. God Bless you both. Hugs, Barbara > > We are testing my 8yr old for RA. I have RA/SLE and she is showing classic signs!!! It is a parents worse nightmare and to know it came from me!!!!!! Atleast she will be treated early; unlike me. I waited for my doctor to stop telling me it is my head for 14yrs!!!! > Sent via BlackBerry by AT & T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 I hope that your 8yr old daughter doesn't have it! I too have an 8 year old daughter and couldn't even begin to imagine what you are going through. I hope everything goes well for her and that you are able to get treatment for her. Lori http://home.comcast.net/~queenstitcher/ http://stitchingqueen.multiply.com Quote Link to comment Share on other sites More sharing options...
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