Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Those are called Motivational Thoughts I'm proned to passing them along for the benefit of others in hopes that it may help someone achieve their goals and dreams. More will follow later. Thanks Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Dear Casaria, I live in Portland and am familiar with the two pediatric rheumatologists here. My daughter is 13 with Still's or systemic JRA. You can email me privately if you want. Please try to make an appointment as soon as you can with a pediatric rheumatologist. Your little one doesn't need to suffer. If you have any questions , just ask. We have been dealing with this disease for two and a half years now. william.e.price@... New to the group Hello everyone. I send a big hello and lot's of luck to everyone going through this. My name is Casaria, my daughter Tasie who will be 3 in May has been diagnosed with Still's. We finally managed to get a diagnosis in February after fighting the " she has a cold " diagnosis for 2yrs. We are constantly battling the fevers of 103+ (which now has become her normal temperature), aches and pains in her knees and arms, and horrible eye pain. She was also born with clubfeet so it is making her walking even more difficult. We are not on any kind of medicinal treatment yet. Which makes things very difficult. She is constantly getting lung infections after the first week of her fevers. Fevers last 3wks, then we get a couple of days of normalcy, then right back at it. It is really pretty hard dealing with this in a 2 1/2 yr old little girl. She is such an angel and I keep asking why this happened. But we are all learning to deal with it, live with it. I am a single mom, trying to go to school as time allows. We recently moved back home with my parents, so as to have a little extra help. My birthday is 01-31 I am 22yrs Tasie's birthday is 5-20-99 almost 3. I am so happy to be a part of this group. I hope that together we can all continue to gain more knowledge and grow with this. Sincerely, Casaria Tuttle Salem, Oregon --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Dear Casaria, I live in Portland and am familiar with the two pediatric rheumatologists here. My daughter is 13 with Still's or systemic JRA. You can email me privately if you want. Please try to make an appointment as soon as you can with a pediatric rheumatologist. Your little one doesn't need to suffer. If you have any questions , just ask. We have been dealing with this disease for two and a half years now. william.e.price@... New to the group Hello everyone. I send a big hello and lot's of luck to everyone going through this. My name is Casaria, my daughter Tasie who will be 3 in May has been diagnosed with Still's. We finally managed to get a diagnosis in February after fighting the " she has a cold " diagnosis for 2yrs. We are constantly battling the fevers of 103+ (which now has become her normal temperature), aches and pains in her knees and arms, and horrible eye pain. She was also born with clubfeet so it is making her walking even more difficult. We are not on any kind of medicinal treatment yet. Which makes things very difficult. She is constantly getting lung infections after the first week of her fevers. Fevers last 3wks, then we get a couple of days of normalcy, then right back at it. It is really pretty hard dealing with this in a 2 1/2 yr old little girl. She is such an angel and I keep asking why this happened. But we are all learning to deal with it, live with it. I am a single mom, trying to go to school as time allows. We recently moved back home with my parents, so as to have a little extra help. My birthday is 01-31 I am 22yrs Tasie's birthday is 5-20-99 almost 3. I am so happy to be a part of this group. I hope that together we can all continue to gain more knowledge and grow with this. Sincerely, Casaria Tuttle Salem, Oregon --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Hi Casaria Just a short note to say welcome to the group! I know you will find lots of support and help here when you need it, so don't hesitate to post. Even though a lot older than your daughter, I am now 17, and was diagnosed with Stills when i was 15, so like your daughter would be classed as having the systemic juvenille RA, so if there is anything you'd like to know id be pleased to try and help. It won't be easy for little Tasie but she will grow up to be a strong determined girl, for sure. Good luck and lots of love....Kate xxx > >Reply-To: Stillsdisease >To: stillsdisease >Subject: New to the group >Date: Thu, 28 Mar 2002 12:31:07 -0800 (PST) > > >Hello everyone. I send a big hello and lot's of luck to everyone going >through this. My name is Casaria, my daughter Tasie who will be 3 in May >has been diagnosed with Still's. We finally managed to get a diagnosis in >February after fighting the " she has a cold " diagnosis for 2yrs. We are >constantly battling the fevers of 103+ (which now has become her normal >temperature), aches and pains in her knees and arms, and horrible eye pain. > She was also born with clubfeet so it is making her walking even more >difficult. > >We are not on any kind of medicinal treatment yet. Which makes things very >difficult. She is constantly getting lung infections after the first week >of her fevers. Fevers last 3wks, then we get a couple of days of normalcy, >then right back at it. > >It is really pretty hard dealing with this in a 2 1/2 yr old little girl. >She is such an angel and I keep asking why this happened. But we are all >learning to deal with it, live with it. > >I am a single mom, trying to go to school as time allows. We recently >moved back home with my parents, so as to have a little extra help. > >My birthday is 01-31 I am 22yrs > >Tasie's birthday is 5-20-99 almost 3. > >I am so happy to be a part of this group. I hope that together we can all >continue to gain more knowledge and grow with this. > >Sincerely, > >Casaria Tuttle > >Salem, Oregon > > > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Hi Casaria Just a short note to say welcome to the group! I know you will find lots of support and help here when you need it, so don't hesitate to post. Even though a lot older than your daughter, I am now 17, and was diagnosed with Stills when i was 15, so like your daughter would be classed as having the systemic juvenille RA, so if there is anything you'd like to know id be pleased to try and help. It won't be easy for little Tasie but she will grow up to be a strong determined girl, for sure. Good luck and lots of love....Kate xxx > >Reply-To: Stillsdisease >To: stillsdisease >Subject: New to the group >Date: Thu, 28 Mar 2002 12:31:07 -0800 (PST) > > >Hello everyone. I send a big hello and lot's of luck to everyone going >through this. My name is Casaria, my daughter Tasie who will be 3 in May >has been diagnosed with Still's. We finally managed to get a diagnosis in >February after fighting the " she has a cold " diagnosis for 2yrs. We are >constantly battling the fevers of 103+ (which now has become her normal >temperature), aches and pains in her knees and arms, and horrible eye pain. > She was also born with clubfeet so it is making her walking even more >difficult. > >We are not on any kind of medicinal treatment yet. Which makes things very >difficult. She is constantly getting lung infections after the first week >of her fevers. Fevers last 3wks, then we get a couple of days of normalcy, >then right back at it. > >It is really pretty hard dealing with this in a 2 1/2 yr old little girl. >She is such an angel and I keep asking why this happened. But we are all >learning to deal with it, live with it. > >I am a single mom, trying to go to school as time allows. We recently >moved back home with my parents, so as to have a little extra help. > >My birthday is 01-31 I am 22yrs > >Tasie's birthday is 5-20-99 almost 3. > >I am so happy to be a part of this group. I hope that together we can all >continue to gain more knowledge and grow with this. > >Sincerely, > >Casaria Tuttle > >Salem, Oregon > > > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Dear Casaria & Tasie, Your story is heartbreaking and makes me realize how lucky I am that I have this horrible disease and not one of my children or a loved one. It must be so hard to watch your daughter experience such pain and be powerless over it. Casaria, I will keep you both in my prayers. Please keep in touch with us. This is one amazing group of individuals. You will find so much support here. I have been out of touch lately due to my own illness, but I hope I can soon rejoin the group on a more regular basis. I miss them all so much when I'm out of touch, but it's so hard when you don't feel well enough to type or even walk across the room to the computer, which seems like miles away. I always feel so much love and support when I'm here though. I hope you keep in touch so that you may experience the same. You are an amazing mother to have been so persistant with the doctors. You knew that it was more than a " cold " and your daughter is so blessed to have a mother to fight for her the way you have. Take good Care...Lots of love and many hugs, Kim --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Dear Casaria & Tasie, Your story is heartbreaking and makes me realize how lucky I am that I have this horrible disease and not one of my children or a loved one. It must be so hard to watch your daughter experience such pain and be powerless over it. Casaria, I will keep you both in my prayers. Please keep in touch with us. This is one amazing group of individuals. You will find so much support here. I have been out of touch lately due to my own illness, but I hope I can soon rejoin the group on a more regular basis. I miss them all so much when I'm out of touch, but it's so hard when you don't feel well enough to type or even walk across the room to the computer, which seems like miles away. I always feel so much love and support when I'm here though. I hope you keep in touch so that you may experience the same. You are an amazing mother to have been so persistant with the doctors. You knew that it was more than a " cold " and your daughter is so blessed to have a mother to fight for her the way you have. Take good Care...Lots of love and many hugs, Kim --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Carly, my name is Patty and welcome to our group. Congratulations on the graduation, that is an amazing accomplishment even with the best of circumstances. We shall look forward to knowing you better. So, until soon, new friend, Pattymelt New to the Group > Hello all! > I just wanted to quickly introduce myself to the > group. I just joined a few days ago. I became ill 1 > 1/2 years ago and was officially dianosed with AOSD > just over one year ago, but I didn't know about this > group until recently. I have posted comments on the > message board in the past, however. When I became ill > in December of 2000 I was about to start my last > semester of college. As all of you know, especially > at the onset of this disease, I was unable to finish. > I had to move home and recoup for about 6 months. In > August I was able to return to school but it's taken > me two semesters to finish (I didn't want to overdo it > when I first returned to the real world). But, I'm > graduating from Brigham Young University in just 3 > days! I'm currently on 12mg Prednisone (recently > tapered down from 15), 20mg MTX per week, 2 Enbrel > injections/week and then of course the fun meds to > counteract the side affects of the Prednisone. I'm > highly functioning compared to where I was a year ago, > but I'm not in remission yet and getting rather > impatient. My body has been doing fairly well, but my > hands and my wrists have problems frequently. I can't > seem to drop below 12mg of Prednisone. Everytime I > do, my body freaks out and I'm forced to go back up. > My Dr doesn't know what's taking so long to get me > into remission and would like to start me on Remicade > but my family can't afford that huge cost right now as > my dad has been out of a job for a year now. > Enough about me, though. I wanted to thank everyone > on this list and let you know how impressed I've been > by the love and support each of you gives to the > others in the group. I know that I've gone through > some pretty hard times since diagnosed and I wish that > I had known about this group back then. I just wanted > to share with someone my excitement about finally > graduating! > Also, for those that have been experiencing dizziness, > I actually experienced a lot of this at the onset of > the disease. Before I even knew I was sicked I lost > consciousness for just a few seconds one night, but I > was standing so I fell and cut my lip. My Dr was > never able to tell me whether it was related or not. > Thanks to those who take the time to read this email. > I look forward to getting to know each of you a little > better. To those who are struggling physically and > emotionally, I send my love and prayers for each of > you. We're all here for you and may not understand > everything you're going through, but we care and can > offer a listening ear. > Lots of love, > Carly > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Hi Carly, Welcome to the group and good luck on your Graduation. Question, are drugs expensive in America? Here in England, they cost about £5.00 odd per prescription. However, as I'm a mature student at University, we get an income supplement and therefore our prescriptions are free until such time as our income expands. Is this the way things work in the States? Take care, we wish you health and happiness, a and Oliver (Oliver is the one with Stills-aged 5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Welcome to the group. Im Kate, 18 from England. Where do you live? You will find lots of help here, ask all the questions you need to, there are some members very knowledgeable about Stills and always friendly and willing to listen and help. Take care both you and your father, love Kate xxx > >Reply-To: Stillsdisease >To: Stillsdisease >Subject: new to the group >Date: Wed, 24 Apr 2002 07:29:59 -0700 (PDT) > >Hello, > my name is Soutar, and i have recently >joined the group and after a week of observing i am >making my presence known. > Actually i do not have Stills but my father >was diagnosed last year. The past year has been a >real adjustment for him. Also it has been a bit >lonely having no one to share with, being the only >documented case of stills in my country. I came upon >this site recently and had to join not only for me as >a concerned family member but on behalf of my father. >So many times although you will be seeing my name i >will be typing on behalf of him.(pain in the wrists) > Since his diagnosis he has been on Celebrex >as his main medication but since two weeks ago it was >changed to Prednisone and since then he has suffered >his first full relapse in a year. > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Welcome to the group. Im Kate, 18 from England. Where do you live? You will find lots of help here, ask all the questions you need to, there are some members very knowledgeable about Stills and always friendly and willing to listen and help. Take care both you and your father, love Kate xxx > >Reply-To: Stillsdisease >To: Stillsdisease >Subject: new to the group >Date: Wed, 24 Apr 2002 07:29:59 -0700 (PDT) > >Hello, > my name is Soutar, and i have recently >joined the group and after a week of observing i am >making my presence known. > Actually i do not have Stills but my father >was diagnosed last year. The past year has been a >real adjustment for him. Also it has been a bit >lonely having no one to share with, being the only >documented case of stills in my country. I came upon >this site recently and had to join not only for me as >a concerned family member but on behalf of my father. >So many times although you will be seeing my name i >will be typing on behalf of him.(pain in the wrists) > Since his diagnosis he has been on Celebrex >as his main medication but since two weeks ago it was >changed to Prednisone and since then he has suffered >his first full relapse in a year. > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Dear & Dad, I want to welcome you to our wonderful support group. We are here for you both, all of us. My name is Sue, known here as Sue #2, and I live in Connecticut. I found out I had stills almost two years ago, after a three year battle of questions, many doctors, millions of tests and mis-diagnosis. Please tell your dad , that his feelings are very validated, and I completely understand the feelings of being alone through all of this. It is a very hard disease to accept and deal with on a daily basis until you can " fall " into some kind of remission. The people here are very caring and understanding, because we are going through what you are facing also. I have learned so much about this disease since I joined here, that at times, I feel that I know more than my doctor. I am also on Celebrex. I am also on a drug called Plaquenil. I am also on prednisone, colchicine and other small meds. A lot of people are on different drugs here, because we are all at different stages of this disease. I hope that you will much comfort here My best to both of you and I look forward to talking more with you. Sincerely, Sue #2 -- new to the group Hello, my name is Soutar, and i have recently joined the group and after a week of observing i am making my presence known. Actually i do not have Stills but my father was diagnosed last year. The past year has been a real adjustment for him. Also it has been a bit lonely having no one to share with, being the only documented case of stills in my country. I came upon this site recently and had to join not only for me as a concerned family member but on behalf of my father. So many times although you will be seeing my name i will be typing on behalf of him.(pain in the wrists) Since his diagnosis he has been on Celebrex as his main medication but since two weeks ago it was changed to Prednisone and since then he has suffered his first full relapse in a year. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Dear & Dad, I want to welcome you to our wonderful support group. We are here for you both, all of us. My name is Sue, known here as Sue #2, and I live in Connecticut. I found out I had stills almost two years ago, after a three year battle of questions, many doctors, millions of tests and mis-diagnosis. Please tell your dad , that his feelings are very validated, and I completely understand the feelings of being alone through all of this. It is a very hard disease to accept and deal with on a daily basis until you can " fall " into some kind of remission. The people here are very caring and understanding, because we are going through what you are facing also. I have learned so much about this disease since I joined here, that at times, I feel that I know more than my doctor. I am also on Celebrex. I am also on a drug called Plaquenil. I am also on prednisone, colchicine and other small meds. A lot of people are on different drugs here, because we are all at different stages of this disease. I hope that you will much comfort here My best to both of you and I look forward to talking more with you. Sincerely, Sue #2 -- new to the group Hello, my name is Soutar, and i have recently joined the group and after a week of observing i am making my presence known. Actually i do not have Stills but my father was diagnosed last year. The past year has been a real adjustment for him. Also it has been a bit lonely having no one to share with, being the only documented case of stills in my country. I came upon this site recently and had to join not only for me as a concerned family member but on behalf of my father. So many times although you will be seeing my name i will be typing on behalf of him.(pain in the wrists) Since his diagnosis he has been on Celebrex as his main medication but since two weeks ago it was changed to Prednisone and since then he has suffered his first full relapse in a year. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Welcome and dad. There are a few members that are here in support of others. We look forward to knowing you both, till soon, Patty also Melt :0) new to the group > Hello, > my name is Soutar, and i have recently > joined the group and after a week of observing i am > making my presence known. > Actually i do not have Stills but my father > was diagnosed last year. The past year has been a > real adjustment for him. Also it has been a bit > lonely having no one to share with, being the only > documented case of stills in my country. I came upon > this site recently and had to join not only for me as > a concerned family member but on behalf of my father. > So many times although you will be seeing my name i > will be typing on behalf of him.(pain in the wrists) > Since his diagnosis he has been on Celebrex > as his main medication but since two weeks ago it was > changed to Prednisone and since then he has suffered > his first full relapse in a year. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Hi, this is Caroline. Welcome, and sorry to hear about your dad. Are you saying they took him off Celebrex and put him on Prednisone? or that they added Prednisone to his Celebrex? I thought you could take both at the same time. I take Relefin ( a similar product), Prednisone, and Methotrexate injections for the Stills. What kind of relapse? and how severe? How can we help? Smiles, and cheers to you for loving your father enough to be involved in his pain and illness with him. Caroline Soutar wrote: Hello, my name is Soutar, and i have recently joined the group and after a week of observing i am making my presence known. Actually i do not have Stills but my father was diagnosed last year. The past year has been a real adjustment for him. Also it has been a bit lonely having no one to share with, being the only documented case of stills in my country. I came upon this site recently and had to join not only for me as a concerned family member but on behalf of my father. So many times although you will be seeing my name i will be typing on behalf of him.(pain in the wrists) Since his diagnosis he has been on Celebrex as his main medication but since two weeks ago it was changed to Prednisone and since then he has suffered his first full relapse in a year. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Hi, this is Caroline. Welcome, and sorry to hear about your dad. Are you saying they took him off Celebrex and put him on Prednisone? or that they added Prednisone to his Celebrex? I thought you could take both at the same time. I take Relefin ( a similar product), Prednisone, and Methotrexate injections for the Stills. What kind of relapse? and how severe? How can we help? Smiles, and cheers to you for loving your father enough to be involved in his pain and illness with him. Caroline Soutar wrote: Hello, my name is Soutar, and i have recently joined the group and after a week of observing i am making my presence known. Actually i do not have Stills but my father was diagnosed last year. The past year has been a real adjustment for him. Also it has been a bit lonely having no one to share with, being the only documented case of stills in my country. I came upon this site recently and had to join not only for me as a concerned family member but on behalf of my father. So many times although you will be seeing my name i will be typing on behalf of him.(pain in the wrists) Since his diagnosis he has been on Celebrex as his main medication but since two weeks ago it was changed to Prednisone and since then he has suffered his first full relapse in a year. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Carly, Congratulations to you for finishing up your degree. You should be so proud of yourself. I had to drop out with only 3 class to finish before obtaining my degree. It was a hard decision to make and it still causes me a lot of pain at times. I think I may try a class this summer. I really need to focus on getting better though and school causes me so much stress. I'm the type that has to make straight A's or I freak and that's not a good thing. I need to work on that issue as well. I have a lot to do to work on me. Anyway, I am so proud of you for being able to accomplish this and I'm so glad that you found us. Please keep posting letting us know how you are doing both with your health and all your endeavors. This is an exciting time in your life. Best Wishes, Love and Hugs, Kim Carly Racker wrote: Hello all! I just wanted to quickly introduce myself to the group. I just joined a few days ago. I became ill 1 1/2 years ago and was officially dianosed with AOSD just over one year ago, but I didn't know about this group until recently. I have posted comments on the message board in the past, however. When I became ill in December of 2000 I was about to start my last semester of college. As all of you know, especially at the onset of this disease, I was unable to finish. I had to move home and recoup for about 6 months. In August I was able to return to school but it's taken me two semesters to finish (I didn't want to overdo it when I first returned to the real world). But, I'm graduating from Brigham Young University in just 3 days! I'm currently on 12mg Prednisone (recently tapered down from 15), 20mg MTX per week, 2 Enbrel injections/week and then of course the fun meds to counteract the side affects of the Prednisone. I'm highly functioning compared to where I was a year ago, but I'm not in remission yet and getting rather impatient. My body has been doing fairly well, but my hands and my wrists have problems frequently. I can't seem to drop below 12mg of Prednisone. Everytime I do, my body freaks out and I'm forced to go back up. My Dr doesn't know what's taking so long to get me into remission and would like to start me on Remicade but my family can't afford that huge cost right now as my dad has been out of a job for a year now. Enough about me, though. I wanted to thank everyone on this list and let you know how impressed I've been by the love and support each of you gives to the others in the group. I know that I've gone through some pretty hard times since diagnosed and I wish that I had known about this group back then. I just wanted to share with someone my excitement about finally graduating! Also, for those that have been experiencing dizziness, I actually experienced a lot of this at the onset of the disease. Before I even knew I was sicked I lost consciousness for just a few seconds one night, but I was standing so I fell and cut my lip. My Dr was never able to tell me whether it was related or not. Thanks to those who take the time to read this email. I look forward to getting to know each of you a little better. To those who are struggling physically and emotionally, I send my love and prayers for each of you. We're all here for you and may not understand everything you're going through, but we care and can offer a listening ear. Lots of love, Carly __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Carly, Congratulations to you for finishing up your degree. You should be so proud of yourself. I had to drop out with only 3 class to finish before obtaining my degree. It was a hard decision to make and it still causes me a lot of pain at times. I think I may try a class this summer. I really need to focus on getting better though and school causes me so much stress. I'm the type that has to make straight A's or I freak and that's not a good thing. I need to work on that issue as well. I have a lot to do to work on me. Anyway, I am so proud of you for being able to accomplish this and I'm so glad that you found us. Please keep posting letting us know how you are doing both with your health and all your endeavors. This is an exciting time in your life. Best Wishes, Love and Hugs, Kim Carly Racker wrote: Hello all! I just wanted to quickly introduce myself to the group. I just joined a few days ago. I became ill 1 1/2 years ago and was officially dianosed with AOSD just over one year ago, but I didn't know about this group until recently. I have posted comments on the message board in the past, however. When I became ill in December of 2000 I was about to start my last semester of college. As all of you know, especially at the onset of this disease, I was unable to finish. I had to move home and recoup for about 6 months. In August I was able to return to school but it's taken me two semesters to finish (I didn't want to overdo it when I first returned to the real world). But, I'm graduating from Brigham Young University in just 3 days! I'm currently on 12mg Prednisone (recently tapered down from 15), 20mg MTX per week, 2 Enbrel injections/week and then of course the fun meds to counteract the side affects of the Prednisone. I'm highly functioning compared to where I was a year ago, but I'm not in remission yet and getting rather impatient. My body has been doing fairly well, but my hands and my wrists have problems frequently. I can't seem to drop below 12mg of Prednisone. Everytime I do, my body freaks out and I'm forced to go back up. My Dr doesn't know what's taking so long to get me into remission and would like to start me on Remicade but my family can't afford that huge cost right now as my dad has been out of a job for a year now. Enough about me, though. I wanted to thank everyone on this list and let you know how impressed I've been by the love and support each of you gives to the others in the group. I know that I've gone through some pretty hard times since diagnosed and I wish that I had known about this group back then. I just wanted to share with someone my excitement about finally graduating! Also, for those that have been experiencing dizziness, I actually experienced a lot of this at the onset of the disease. Before I even knew I was sicked I lost consciousness for just a few seconds one night, but I was standing so I fell and cut my lip. My Dr was never able to tell me whether it was related or not. Thanks to those who take the time to read this email. I look forward to getting to know each of you a little better. To those who are struggling physically and emotionally, I send my love and prayers for each of you. We're all here for you and may not understand everything you're going through, but we care and can offer a listening ear. Lots of love, Carly __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Elizabth, Welcome to the group! I have a son who is also 13. He is in the 7th grade and really doesn't care for school much, except for lunch time and music I will be very interested in hearing your opinions on topics as they pop up - a warning though - this group has been very politically oriented lately - could be kind of dull for a 13 year old. Ronnie new to the group Hi, I'm . I am 13 and have Asperger's Syndrome. I don't want to be treated differently from the adults, though. I will understand most things, I just think the HASTeens group got too much into Freud, way over my head. Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. Schafer Autism Report News and information on Autism To Subscribe http://home.sprynet.com/~schafer/index.html Healing Autism: No Finer Cause on the Planet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi , Welcome to the group. We look forward to your input. One thing you may be able to help with is some suggestions on how to tell a teenager he's been diagnosed with Asperger Syndrome and how to help him adjust to the diagnosis. Any ideas? Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi , I too would like to say welcome. While I usually lurk, I too will be glad to hear what your take on things are from time to time.I am the mother and aunt of kids affected by asd. Hope this group does as much for you as it has for me. new to the group Hi, I'm . I am 13 and have Asperger's Syndrome. I don't want to be treated differently from the adults, though. I will understand most things, I just think the HASTeens group got too much into Freud, way over my head. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Don't worry, I doubt it will get as political as the HASTeens group. Talking about the thinking of Freud and his theories was not as boring as some school classes. Anyway, it doesn't matter, I'm here just to learn and help others with my opinions. P.S. Did you see the movie about a bus for special needs kids that was hijacked? It's called Terror Ahead:The Hijacking of Bus 17. It really tests your knowledge of disabilities to figure out the disability in each kid. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , Thanks for the welcome. I think something your kids might appreciate something (I did) called Jeanne Lyons Gather Stars For Your Children. She sings songs for teaching social skills. Some songs are " Perseveration Station " , " Way Down Deep(We're Mostly the Same) " , " Flexibility " , " (positive song about a nonverbal child) " , and " Personal Space Invader " . Look her up and you can order her stuff for a low price and hear samples on her web page. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , Thanks, I am always looking for good teaching material. Re: new to the group , Thanks for the welcome. I think something your kids might appreciate something (I did) called Jeanne Lyons Gather Stars For Your Children. She sings songs for teaching social skills. Some songs are " Perseveration Station " , " Way Down Deep(We're Mostly the Same) " , " Flexibility " , " (positive song about a nonverbal child) " , and " Personal Space Invader " . Look her up and you can order her stuff for a low price and hear samples on her web page. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 we use dr for the bio med stuff and just changed to dr visootak (developmental pediatric specialists) for our dev ped who didnt shun the diet and bio med stuff. > > Try Dr Jonh Hicks....www.pathwaysmedicaladvocates.com > Cale Quote Link to comment Share on other sites More sharing options...
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