Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello Lynne, Welcome to the PA group! Sorry it's happened to you too... But you're in good company! There are lots of us here with a wide variety of experiences. Please feel welcomed to come here and share, vent, ask questions, find support. Have you and your doctor discussed Remicade and Enbrel? I know you're thinking " oh great one more to add " . But the idea is that if you can get on either Remicade or Enbrel and they work for you, you could easily drop most of the other medications you've been on. You're on a lot of medications and so you have to decide whether you think you're getting worse or if those meds are holding you. Don't be afraid to advocate for yourself. Do ask lots of questions. There are some potential side-effects with these new meds which are actually in a class called " biologic response modifiers " . But they are also making people's lives much more bearable. Mine for instance! Remicade is my current miracle drug. I'll take it as long as it keeps working for me! Best wishes, Meghan > Hi my name is Lynne. I was diagnosis with PA roughly 4 yrs ago. > I've had P for over 30 yrs. I first noticed it in my right index > finger. I just thought I over used it so I let it go for about a > year. I went in to see my primary doc for a check up and just for > the grins of it, I decided to ask her about my finger. She referred > me to a great Rhuemy who diagnosed it properly right off the bat. > For the first couple of years I was miserable while he was trying to > find the right dosages. Several different medicines later I'm > finally able to walk and move around almost as I was before. I'm > taking Methotrexate, Prednisone, Ultram, and Vioxx. I would really > like to lose some of those pills...I can't believe it's good for my > body, but it works!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 You've come to the right place. My ds Austin is now 6. I found out early that he has problems. I often can't understand how these children slip through the cracks and do not get diagnosis until later on because of this reason. The meltdown are just downright intense. My son is now on a combo of Meds that seems to be helping though. Once you find that right combo, you will be happy you did. My son is now functioning quite " normally " so to speak. Without the meds, he cannot even stand himself. I did learn one thing though, he cannot be in a normal daycare setting. Too much overstimulation, and not enough one on one time. With all of the noise, its overwhelming. You may need to get your son some Occupational Therapy to help cope with his meltdowns. Good luck and hang in there. Jean > > My son who is 7 years old has dx with AS. None of the people in his > life know how or what to do to help him. (myself included)We are > seeing a behavioral specialist that keep changeing the medication and > none of it seems to be working. There has not been any form of > displine that can get his attention. The daycare I'm using has been > great but they are not sure how to handle his outburst, hitting, or > his crying, or that fact that everything in his mind belongs to him. > My son probably has ADD also. He can't sit down for any length of > time, which create problems in school. I don't know what to do...I've > tried everything....I hope somebody out there can give me a little > advice..ok a lot of advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 would you mind saying what meds you have found to be effective? brad --- <Jean.Myers@...> wrote: --------------------------------- You've come to the right place. My ds Austin is now 6. I found out early that he has problems. I often can't understand how these children slip through the cracks and do not get diagnosis until later on because of this reason. The meltdown are just downright intense. My son is now on a combo of Meds that seems to be helping though. Once you find that right combo, you will be happy you did. My son is now functioning quite " normally " so to speak. Without the meds, he cannot even stand himself. I did learn one thing though, he cannot be in a normal daycare setting. Too much overstimulation, and not enough one on one time. With all of the noise, its overwhelming. You may need to get your son some Occupational Therapy to help cope with his meltdowns. Good luck and hang in there. Jean > > My son who is 7 years old has dx with AS. None of the people in his > life know how or what to do to help him. (myself included)We are > seeing a behavioral specialist that keep changeing the medication and > none of it seems to be working. There has not been any form of > displine that can get his attention. The daycare I'm using has been > great but they are not sure how to handle his outburst, hitting, or > his crying, or that fact that everything in his mind belongs to him. > My son probably has ADD also. He can't sit down for any length of > time, which create problems in school. I don't know what to do...I've > tried everything....I hope somebody out there can give me a little > advice..ok a lot of advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 My son isn't taking any meds. We have him in ABA therapy,OT,PT and speech. He also attends a social group at school for 30 min per week. We tried Strattera with my son and after three weeks we noticed no change. My son is 7 1/2 and right now isn't in need of meds. He doesn't really hurt himself or others. If he does start then we may consider meds. I am not against them I know some kids need them I just worry about when they get 18 or older if they decide to stop taking them then what? Ann Re: ( ) Re: I'm New at This would you mind saying what meds you have found to be effective? brad --- <Jean.Myers@...> wrote: --------------------------------- You've come to the right place. My ds Austin is now 6. I found out early that he has problems. I often can't understand how these children slip through the cracks and do not get diagnosis until later on because of this reason. The meltdown are just downright intense. My son is now on a combo of Meds that seems to be helping though. Once you find that right combo, you will be happy you did. My son is now functioning quite " normally " so to speak. Without the meds, he cannot even stand himself. I did learn one thing though, he cannot be in a normal daycare setting. Too much overstimulation, and not enough one on one time. With all of the noise, its overwhelming. You may need to get your son some Occupational Therapy to help cope with his meltdowns. Good luck and hang in there. Jean > > My son who is 7 years old has dx with AS. None of the people in his > life know how or what to do to help him. (myself included)We are > seeing a behavioral specialist that keep changeing the medication and > none of it seems to be working. There has not been any form of > displine that can get his attention. The daycare I'm using has been > great but they are not sure how to handle his outburst, hitting, or > his crying, or that fact that everything in his mind belongs to him. > My son probably has ADD also. He can't sit down for any length of > time, which create problems in school. I don't know what to do...I've > tried everything....I hope somebody out there can give me a little > advice..ok a lot of advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 Hi Ann, I just wanted to relay what I learned about medicine use that alleviated some of the concerns you cited (some the same as my own). Just because a person may take a medicine when they are younger, does not mean that they will require it as an adult; apparently a great number of children, in fact, will not. For those who do need to sustain medicine as an adult, they are usually mature enough at this point to realize that it is benefiting them. I asked a friend of our family's 15 year old son what his experience is - he has ADHD - and he has told me himself that he knows he needs his medicine to focus and be calmer. BTW our son who is 9 presently takes the lowest dose of Concerta for ADHD (inattentive type). > > > > My son who is 7 years old has dx with AS. None of > the people in his > > life know how or what to do to help him. (myself > included)We are > > seeing a behavioral specialist that keep changeing > the medication and > > none of it seems to be working. There has not been > any form of > > displine that can get his attention. The daycare I'm > using has been > > great but they are not sure how to handle his > outburst, hitting, or > > his crying, or that fact that everything in his mind > belongs to him. > > My son probably has ADD also. He can't sit down for > any length of > > time, which create problems in school. I don't know > what to do...I've > > tried everything....I hope somebody out there can > give me a little > > advice..ok a lot of advice. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 Thanks for the information on taking meds. I am also a certified pharmacy tech and tend to have seen the overmedicating of children. Sorry if I seemed anti-med I really am not. It's good to know if my son does need them that he may not need them for life. Ann ( ) Re: I'm New at This Hi Ann, I just wanted to relay what I learned about medicine use that alleviated some of the concerns you cited (some the same as my own). Just because a person may take a medicine when they are younger, does not mean that they will require it as an adult; apparently a great number of children, in fact, will not. For those who do need to sustain medicine as an adult, they are usually mature enough at this point to realize that it is benefiting them. I asked a friend of our family's 15 year old son what his experience is - he has ADHD - and he has told me himself that he knows he needs his medicine to focus and be calmer. BTW our son who is 9 presently takes the lowest dose of Concerta for ADHD (inattentive type). > > > > My son who is 7 years old has dx with AS. None of > the people in his > > life know how or what to do to help him. (myself > included)We are > > seeing a behavioral specialist that keep changeing > the medication and > > none of it seems to be working. There has not been > any form of > > displine that can get his attention. The daycare I'm > using has been > > great but they are not sure how to handle his > outburst, hitting, or > > his crying, or that fact that everything in his mind > belongs to him. > > My son probably has ADD also. He can't sit down for > any length of > > time, which create problems in school. I don't know > what to do...I've > > tried everything....I hope somebody out there can > give me a little > > advice..ok a lot of advice. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 There is a book by Dr. Palmer that is very usefull to read. I know that there are web sites for blood work levels and readings. There is one for the U.K. and another for the U.S.. If no one else posts them before I find my file I will post both sites for you since I am not sure which you need. Please feel free to post any and all questions we all had a lot of them in the beginning and still after 10yrs I am still learning. Welcome the WV hillbilly From: d_rene_clark <d_rene_clark@...> Date: 2007/03/20 Tue PM 03:17:48 CDT Subject: [ ] I'm new at this I was told very gently and kindly from my doctor that my blood work shows that I have Primary Biliery Cirrhosis and that I have also have Autoimmune Hepatitis. I am having a Biopsy next week. To tell the truth everything I have read so far is pretty terrifying. I guess my life is not my own now and that I will need to consult on everything. Does anyone out there know of the best place to find information. I'm not sure how to take this all in. I'd like to understand my " numbers " but so far I haven't found a place that mentions this. To tell the truth I know so little about all of this. I'd be grateful for any information. Thanks, Rene the WV hillbilly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2008 Report Share Posted February 21, 2008 Hi everyone! I am a new member. My son was diagnosed with plagiocephaly about 4 or 5 weeks ago. We are going on February 29th to get him sized and to pick out which helmet or band to go with. We are dealing with Hanger and the one thing that I really like is that they do not have to make the cast of their head, but they use the insignia laser. It's also really easy to track their improvement with the laser. It's really interesting reading what all of you are going through because I have some of the same issues. It's great to be a part of your group! Kristi son Gunnar 5 mos old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Welcome to the group Kristi and Gunnar. My daughter got her band at 5 mo, and did great. She's been out of it for ages now (well over a year) but I am so glad we did it. Let us know how he does. -christine sydney 2 yrs starband grad > > Hi everyone! I am a new member. My son was diagnosed with > plagiocephaly about 4 or 5 weeks ago. We are going on February 29th to > get him sized and to pick out which helmet or band to go with. We are > dealing with Hanger and the one thing that I really like is that they > do not have to make the cast of their head, but they use the insignia > laser. It's also really easy to track their improvement with the > laser. It's really interesting reading what all of you are going > through because I have some of the same issues. It's great to be a > part of your group! Kristi > > son Gunnar 5 mos old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 thanks! I will keep you posted...I'm kind of scared, because he is in daycare, and I'm not sure how he will do with it being on all the time. Keeping my fingers crossed!christineashok <christineashok@...> wrote: Welcome to the group Kristi and Gunnar. My daughter got her band at 5mo, and did great. She's been out of it for ages now (well over ayear) but I am so glad we did it.Let us know how he does.-christinesydney 2 yrs starband grad>> Hi everyone! I am a new member. My son was diagnosed with > plagiocephaly about 4 or 5 weeks ago. We are going on February 29th to > get him sized and to pick out which helmet or band to go with. We are > dealing with Hanger and the one thing that I really like is that they > do not have to make the cast of their head, but they use the insignia > laser. It's also really easy to track their improvement with the > laser. It's really interesting reading what all of you are going > through because I have some of the same issues. It's great to be a > part of your group! Kristi> > son Gunnar 5 mos old> Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
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