Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 Hi , Welcome to the group! was diagnosed with systemic onset at 2 almost 3 and was started on 30mg Prednisilone.He had the fevers, rash and swollen lymph nodes but his arthritis was severe much more bothersome then the systemic symptoms. It took us a total of 21 months to get off the pred and his usual dose range was between 20 and 9mg. It also took the max amount of Ibuprofen,MTX shots,Plaquenil and finaly Enbrel to get off the pred.Luckily the end result was no pred,Plaquenil or Ibuprofen.The MTX is just pills now and a starting dose of 7.5mg and his 1 vial of Enbrel a week. The quicker you can get Blake on the MTX the better,the hematologist can monitor lab work for side effects and it takes several weeks to a few months to start working. Don't start wondering about Enbrel yet,they would max the MTX out first and Enbrel usualy isn't real efficiant with systemics but 's living proof that it's worth a try. Good luck at geeting into a ped rheumy and I hope you can find one you like. Hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 Good morning , Well, we are your neighbor, living in Fredericksburg.....My son was diagnosed with systemic JRA at the age of one...he is now 6..so, needless to say, we can relate to your situation and hopefully help. has been treated at Texas ish Rite in Dallas (Shriner hospital specializing in arthritis and completely FREE). My husband is a physician and I am a nurse anesthetist...and trust me...it was still a BIG struggle in the begining... had severe systemic symptoms..and moderate to severe arthritis. I am happy to report that he is in full remission after starting a drug called KINERET. He was quite ill for about 3 1/2 years prior to that. Please call me if you have any questions (830) 997-4821 or by cell 456-1654 (we are in the middle of a move/ local..so if you don't reach me please leave a message)...or by email...mwestfal " at " ktc.com. Hope we can help you and little Blake, Marguerite and (systemic, 6) > > HI All, > I am new to the group and new to the world of JRA.. My 2 year old has > recently been " diagnosed " with systemic JRA. I have a couple of > questions.. > We live in San , Texas and there is only one pedi Rheum. that > does not take our insurance.......so we are being forced to another > city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone used > him or heard of him? > > Second, how long have your kids taken predinsone and what dosage? > Blake started on 20mg a day and we are currently tapering the dosage > before we visit the rheum. in Austin. 20 sounds a little excessive to > me- is that a normal dose to start off with? > > Are there any support groups of any kind in San or Austin? > > Thanks. > (Blake 2, systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 Welcome to the group, My 4 y/o was diagnosis with systemic JRA last March and was on 15 mg or 1 mg per kilogram for about 3 of the last 9 months while starting methotrexate pills then now on injection and having some flares while tapering the prednisone. With active disease- fevers and joint issues and the inflammation markers high ( CRP and Sed rate) starting dose can vary 1- 2 mg per kilogram up to 60 mg of prednisone a day. I know with asthma for example, 2 mg per kilogram is used by many providers for a flare but the burst is given over less a week or a few days while getting over a cold. I would discuss your concerns with his doctor and build a strong relationship. With systemic JRA what is the best treatment is unclear. It is a great question if it is to o high of a starting does? There is a lot of variable to consider So keep asking questions this message group has been excellent to learn about systemic JRA. I hipe Blake starts feeling better soon. Take care Joe 4 systemic Re: New to Group In a message dated 11/27/05 4:48:23 PM Central Standard Time, bdwmom@... writes: > HI All, > I am new to the group and new to the world of JRA. My 2 year old has > recently been " diagnosed " with systemic JRA. I have a couple of > questions. > We live in San , Texas and there is only one pedi Rheum. that > does not take our insurance.......so we are being forced to another > city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone used > him or heard of him? > > Second, how long have your kids taken predinsone and what dosage? > Blake started on 20mg a day and we are currently tapering the dosage > before we visit the rheum. in Austin. 20 sounds a little excessive to > me- is that a normal dose to start off with? > > Are there any support groups of any kind in San or Austin? > > Thanks. > (Blake 2, systemic) > Hi, My 10 year old daughter has polyarticular jra. She was diagnosed about 3 years ago. We go see Dr. Cole in San . Three years ago the nurse at Dr. Cole's got us to go to Jambalaya Jubilee in Shreveport, Louisiana in the summer. We got tons of information and got to talk to many parents and experts. Last year a group was started in San . Since I live in South Texas I could not join. My daughter went through the Prednisone. The initial amount was alot but it was to stimulate the body and to lessen the inflamation. My daughter could not walk and could not hold a glass or fork. The Prednisone works fast to lessen the inflamation but it is not that good for the child to have for a long time. It was hard tapering. We had to reduce an ml. per week and once we thought we had it beat she would start hurting and had to give her the prednisone. Currently my daughter in on the Folic Acid, Methotrexate and Enbrel. Hope this helps. o Salas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Do you know how to join the group here in SA? That sounds like it would be very helpful. We don't see Cole because he does not take our insurance, so we are going to Houston. Thanks for your help. > > In a message dated 11/27/05 4:48:23 PM Central Standard Time, > bdwmom@y... writes: > > > > HI All, > > I am new to the group and new to the world of JRA. My 2 year old has > > recently been " diagnosed " with systemic JRA. I have a couple of > > questions. > > We live in San , Texas and there is only one pedi Rheum. that > > does not take our insurance.......so we are being forced to another > > city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone used > > him or heard of him? > > > > Second, how long have your kids taken predinsone and what dosage? > > Blake started on 20mg a day and we are currently tapering the dosage > > before we visit the rheum. in Austin. 20 sounds a little excessive to > > me- is that a normal dose to start off with? > > > > Are there any support groups of any kind in San or Austin? > > > > Thanks. > > (Blake 2, systemic) > > > > Hi, > > My 10 year old daughter has polyarticular jra. She was diagnosed about 3 > years ago. We go see Dr. Cole in San . > Three years ago the nurse at Dr. Cole's got us to go to Jambalaya Jubilee in > Shreveport, Louisiana in the summer. We got tons of information and got to > talk to many parents and experts. > Last year a group was started in San . Since I live in South Texas I > could not join. > My daughter went through the Prednisone. The initial amount was alot but it > was to stimulate the body and to lessen the inflamation. My daughter could > not walk and could not hold a glass or fork. The Prednisone works fast to > lessen the inflamation but it is not that good for the child to have for a long > time. It was hard tapering. We had to reduce an ml. per week and once we > thought we had it beat she would start hurting and had to give her the prednisone. > Currently my daughter in on the Folic Acid, Methotrexate and Enbrel. > > Hope this helps. > > o Salas > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 In a message dated 11/28/05 11:36:30 PM Central Standard Time, bdwmom@... writes: > Do you know how to join the group here in SA? That sounds like it > would be very helpful. We don't see Cole because he does not take > our insurance, so we are going to Houston. Thanks for your help. > Hi, The group was started by a group of parents whose children also see Dr. Cole. There are 2 or 3 families that were meeting and inviting people to talk to them. You could talk to Sylvia, Dr. Cole's nurse, and see if she knows when and where they meet. The best answers I have found here and the Jambalaya Jubilee. The beginning is just scary. You do not know where you are heading or facing or what the end effect will be. After seeing my daughter regain the ability to walk because of the Prednisone, I was so happy. Dr. Cole explains to us the medication. Hope this helps. o Salas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Screaming, That sounds so awful I don't know what to say except I hope it works out well for you. Best of luck with the test Mike > > i belong to a couple of other liver groups but my first time here my > short history is i have hep c,cirriossis and now they have found 6 > tumers in my liver because of fluid around my liver and my low > clotting factors they couldn't do a simple biop to find if they are > cancer so this wedsday they are going to admit me overnight to the > hospital insert a tube to drain the fluid and monitor my bleding for > the biop not looking forward to it but the not knowing is worse i am > still hopeful that maybe they will be benign but the markers show > better that 90% chance they are maliginant if they are my oncoligist > is going to see if i can get in a new clincal trial that they have > going at vanderbilt well that all for now as if thats not more than > enough for anyone wish me luck maybe i will have good news next time > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Banshe, Where do you live? Any chance you can get to FLorida or maybe even Arizona? I hear they are transplanting people in both places at pretty low MELD scores, maybe you could get in and get the surgery done ASAP. Or they may want to do radiation or chemotherap before they do the transplant. Anyway, you're in good hands at Vanderbilt. We ALL wish you tons of luck and wait to hear good news from you, OK? Best wishes, Michele -- screamingbanshe2001 <abbr381@...> wrote: > i belong to a couple of other liver groups but my > first time here my > short history is i have hep c,cirriossis and now > they have found 6 > tumers in my liver because of fluid around my liver > and my low > clotting factors they couldn't do a simple biop to > find if they are > cancer so this wedsday they are going to admit me > overnight to the > hospital insert a tube to drain the fluid and > monitor my bleding for > the biop not looking forward to it but the not > knowing is worse i am > still hopeful that maybe they will be benign but the > markers show > better that 90% chance they are maliginant if they > are my oncoligist > is going to see if i can get in a new clincal trial > that they have > going at vanderbilt well that all for now as if > thats not more than > enough for anyone wish me luck maybe i will have > good news next time > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. --- kg4cwz <harp@...> wrote: > I'm new to your group and this is my first post. > I'm handling a lot of > different things right now in addition to my son's > situation (he's a > case where doctors could easily prescribe one of the > SSRI's). Anyway, > before I make my post about that, I've come upon > this very interesting > site as it addresses a concern I've had for some > time with my son. > http://psychrights.org/index.htm > This site talks about court ordered medication for > your children. I am > constantly concerned about this happening to my son > as his behaviors > are attracting so much attention and concern in > public, despite all the > efforts I do to keep him quiet and under some kind > of control. > I will post more in a bit, but for now I wanted to > share this very > interesting site. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. --- kg4cwz <harp@...> wrote: > I'm new to your group and this is my first post. > I'm handling a lot of > different things right now in addition to my son's > situation (he's a > case where doctors could easily prescribe one of the > SSRI's). Anyway, > before I make my post about that, I've come upon > this very interesting > site as it addresses a concern I've had for some > time with my son. > http://psychrights.org/index.htm > This site talks about court ordered medication for > your children. I am > constantly concerned about this happening to my son > as his behaviors > are attracting so much attention and concern in > public, despite all the > efforts I do to keep him quiet and under some kind > of control. > I will post more in a bit, but for now I wanted to > share this very > interesting site. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. --- kg4cwz <harp@...> wrote: > I'm new to your group and this is my first post. > I'm handling a lot of > different things right now in addition to my son's > situation (he's a > case where doctors could easily prescribe one of the > SSRI's). Anyway, > before I make my post about that, I've come upon > this very interesting > site as it addresses a concern I've had for some > time with my son. > http://psychrights.org/index.htm > This site talks about court ordered medication for > your children. I am > constantly concerned about this happening to my son > as his behaviors > are attracting so much attention and concern in > public, despite all the > efforts I do to keep him quiet and under some kind > of control. > I will post more in a bit, but for now I wanted to > share this very > interesting site. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. --- kg4cwz <harp@...> wrote: > I'm new to your group and this is my first post. > I'm handling a lot of > different things right now in addition to my son's > situation (he's a > case where doctors could easily prescribe one of the > SSRI's). Anyway, > before I make my post about that, I've come upon > this very interesting > site as it addresses a concern I've had for some > time with my son. > http://psychrights.org/index.htm > This site talks about court ordered medication for > your children. I am > constantly concerned about this happening to my son > as his behaviors > are attracting so much attention and concern in > public, despite all the > efforts I do to keep him quiet and under some kind > of control. > I will post more in a bit, but for now I wanted to > share this very > interesting site. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Dear , Is your son very physically active? Best, Jim Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Dear , Is your son very physically active? Best, Jim Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Dear , Is your son very physically active? Best, Jim Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Dear , Is your son very physically active? Best, Jim Thank you, Maggs. I've just been so busy lately. It's hard to keep up with a very demanding child in addition to all the other things that seem to go on in life. I've joined the group because I'd like to hear how others have handled their situations and perhaps someone will know of some things I haven't thought of yet. lol! I'm going to try to post a little right now. I've had trouble with my son since he was 18 months old. He just woke up one day with problems. As I had been in the health food industry since my early 20's, I had been aware of the importance of staying away from many dangerous substances, so I had been extremely careful in my handling of him, as I would be with any child I was caring for. I therefore had him born at home without any medical intervention. During my pregnancy, I had not taken any drugs whatsoever. I was very careful in my food consumption as well. My son did not receive any shots nor did I, and yet, he just woke up raging one day. It came on like the flu. Up until that time, he had been very clingy and almost scared like he was always looking over his shoulder and frightened that something was going to 'get him'. That's the best way I can describe it. Then, this one morning, he woke up as if he'd been 'gotten'. From then on, I have had unreasonable ragings with him. He just turned 16 last month. Naturally, everyone wanted to diagnosis him and tell me what his problem was. The medical profession was full of drugs to offer me. I turned them all down. I had a lot of unease about the drugs for ADHD, which was the first thing he got diagnosed with. His symptoms would mutate so that it looked like he was getting better and then something else would pop out of the closet. I would often think that had I used drugs, the doctors would have credited his improvement to the drugs, but since I didn't use drugs, I knew this was the course of whatever was going on. I watched other children go through the drugs and suffer the side effects, but yet I didn't see any of them improve, so I didn't understand why anyone would use something that had such questionable side effects (and hadn't been proven to do anything to help). I'm not trying to make anyone wrong here that has used drugs because I understand the sheer frustration when you have nothing else you can do and drugs are all that's being offered to you. So, here we are at age 16. I'm totally fried and worn out with dealing with him--the stresses of it all, the unpredictability of it, the threats to himself, the threats from others, and the threats on me from not just him, but from people in general that think there is something I can do and I'm not doing it. I have been fortunate to have some doctors tell me that there was no drug that would help my son. I don't know why they've said this, but one psychiatrist did say this to me. I think that might be because his symptoms don't seem classic to them of any of the disorders. He does seem to present an unusual case. On one hand, he shows the signs of OCD, but then another psychologist told me, " I don't know what he has, but it's definitely not OCD. " Just a week later I had a different psychologist tell me that she felt it had to be OCD and she would test for it. I took him in (this was last November) to be tested and the tester tested him for almost 8 hours straight! I told her that there was no way you could get an accurate test score like that. My son was flipping out mentally just doing the test, though he was behaving just fine. Any kid would have gone nuts with something like that! Then the tester falsely accused my boyfriend of 9 years, of cussing at my son outside the men's bathroom while the testing was going on. This simply didn't happen, and even if it had, the tester never could have witnessed it because the tester never left her office and the men's bathroom was outside her office, down the hall! So, I left that psychologist and that tester, never even collecting the test results from them. Shortly before we saw this disturbed psychologist in November, my son had had an incident with me in a parking lot outside of a grocery store. He had tried to attack me and I had screamed. A grocery boy heard me and flagged down an unmarked police car. They arrested my son. It was his first arrest. We have been to court and the case has been continued. I got a real taste of the justice system. I don't know where justice has gone, but it's not in the courts any more. My son's lawyer told me that since no one witnessed this incident, there wasn't a case if neither of us said anything. Well, neither of us said anything. However the lawyer said that my son had hit me and the judge decided my son needed some anger management course and continued the case to see how that worked out. Now, how does that happen? I didn't say anything. My son didn't say anything. There was no witness and my son is assumed guilty of having hit me! What happened to justice?? My son does need some help, but I'm not interested in giving him any more to deal with than he already has. I'm not interested in giving him suicide in a pill or destroyed kidneys or a heart condition or whatever else there is out there in these pills that kill. I have yet to see any scientific documentation that shows that these pills do anything to help. I want to know what has happened to medicine? Isn't there still an oath about first doing no harm? What has happened to our medical profession? It seems to me that the lawyers are messed up and the doctors are messed up. It also seems to me that there is a big machine that's trying to pull everyone else into the mess up, too. I'm not interested. I don't know why my son has problems. He clearly has things that make him almost impossible to live with at times, but he's still very healthy and he's not contemplating suicide. His behaviors could cause him a lot of harm, though. I don't want to make this post too lengthy, so I'll stop here for now. There is a lot more that I could say, but for now I'll leave it just at this. Oh, I will add that my son's major problem is unreasonable, uncontrollable rage. When that's not going on, he's a great kid--very smart and very physically attractive and liked by everyone. He's amazingly popular. He does talk about contamination from time to time, but it has greatly lessened, though it's still there. Several years ago it was very intense, but it is not now. So, this is my short story version for now. > , A lot of us have had problems with our kids. Feel free to post, and I am sure you will get a lot of support and information to help you. Maggs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 wondering why you are taking neurontin--not related to your back, right? i still have nerve damage in one big toe from a laminectomy 10 years ago--they seem to be getting better about that but still they have to do so much cutting that it seems impossible to hit some nerves and also with fusion. if you had part of your upper spine fused, i would wonder if that is bothering your low back. if we restrict movement in one area, the others feel it. Carlene New to group I just had Cervical Laminectomy with Mass Screws. and Fusion C3 thru C6 Jan. 5th, any advise on Recovery past the two month mark, so far lots of nerver damage in my hands and arms, feels like steam burns on my hands and arms, and when I put my right hand in water it makes my elbow hurt! Any ideas if Neurontin causes chest pain? I have it when I take it, if I stop taking the chest pain goes away. Any and all suggestions are appreciated. My lower back aches when I sit for any length of time. Could that be related. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I am taking Neurontin for the Neuropathy in my hands and arms. Not for the back, and I guess you are right about one hurting because of the other. I am starting to have spasms in the shoulder area, however was sort of expecting that one. I guess I am just beginning to see the seriousness of what was done. Had and excellent doctor, and just wondering the long term affects if anyone else had similar surgery as mine. Thanks Shirley Carlene Farmer <birddog@...> wrote: wondering why you are taking neurontin--not related to your back, right? i still have nerve damage in one big toe from a laminectomy 10 years ago--they seem to be getting better about that but still they have to do so much cutting that it seems impossible to hit some nerves and also with fusion. if you had part of your upper spine fused, i would wonder if that is bothering your low back. if we restrict movement in one area, the others feel it. Carlene New to group I just had Cervical Laminectomy with Mass Screws. and Fusion C3 thru C6 Jan. 5th, any advise on Recovery past the two month mark, so far lots of nerver damage in my hands and arms, feels like steam burns on my hands and arms, and when I put my right hand in water it makes my elbow hurt! Any ideas if Neurontin causes chest pain? I have it when I take it, if I stop taking the chest pain goes away. Any and all suggestions are appreciated. My lower back aches when I sit for any length of time. Could that be related. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Shirley, I had Fusion -- C-3-4-5-6-7--T1 done about 5 yrs ago. This also left me with arm & hand nerve damage primarily on the left side. The Neurologist who did my operations put me on Neurontin back then & altho it has helped its not going to relieve all your pain. I read something like 30-60% better depending on the person. Neurontin was a drug designed for seizures & they found it would in some folks work for nerve damage pain as well. Now Pfizer has come out with a new drug designed more for nerve pain called " lyrica " . New so no long term reports yet & my G.P. just switched me over less then a week ago so to early to tell how it will work for me. Can only say he told me has now switched about 12 of his patients over to lyrica & so far they all prefer it ! At the very least its worth asking your DR. about it.... JIM.... > > I am taking Neurontin for the Neuropathy in my hands and arms. Not for the back, and I guess you are right about one hurting because of the other. I am starting to have spasms in the shoulder area, however was sort of expecting that one. I guess I am just beginning to see the seriousness of what was done. Had and excellent doctor, and just wondering the long term affects if anyone else had similar surgery as mine. Thanks > Shirley > > Carlene Farmer <birddog@...> wrote: > wondering why you are taking neurontin--not related to your back, right? i still have nerve damage in one big toe from a laminectomy 10 years ago--they seem to be getting better about that but still they have to do so much cutting that it seems impossible to hit some nerves and also with fusion. > > if you had part of your upper spine fused, i would wonder if that is bothering your low back. if we restrict movement in one area, the others feel it. > > Carlene > > New to group > > > I just had Cervical Laminectomy with Mass Screws. and Fusion C3 thru > C6 Jan. 5th, any advise on Recovery past the two month mark, so far > lots of nerver damage in my hands and arms, feels like steam burns on > my hands and arms, and when I put my right hand in water it makes my > elbow hurt! Any ideas if Neurontin causes chest pain? I have it when > I take it, if I stop taking the chest pain goes away. Any and all > suggestions are appreciated. My lower back aches when I sit for any > length of time. Could that be related. > Shirley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 for those of you who had permanent nerve damage, i'm wondering what your symptoms in the arm were like at their worst - extent of pain, numbness, etc. I currently have some numbness in the tip of my pinky and pain around the elbow. Shirley Moma wrote: >I am taking Neurontin for the Neuropathy in my hands and arms. Not for the back, and I guess you are right about one hurting because of the other. I am starting to have spasms in the shoulder area, however was sort of expecting that one. I guess I am just beginning to see the seriousness of what was done. Had and excellent doctor, and just wondering the long term affects if anyone else had similar surgery as mine. Thanks > Shirley > >Carlene Farmer <birddog@...> wrote: > wondering why you are taking neurontin--not related to your back, right? i still have nerve damage in one big toe from a laminectomy 10 years ago--they seem to be getting better about that but still they have to do so much cutting that it seems impossible to hit some nerves and also with fusion. > >if you had part of your upper spine fused, i would wonder if that is bothering your low back. if we restrict movement in one area, the others feel it. > >Carlene > > New to group > > >I just had Cervical Laminectomy with Mass Screws. and Fusion C3 thru >C6 Jan. 5th, any advise on Recovery past the two month mark, so far >lots of nerver damage in my hands and arms, feels like steam burns on >my hands and arms, and when I put my right hand in water it makes my >elbow hurt! Any ideas if Neurontin causes chest pain? I have it when >I take it, if I stop taking the chest pain goes away. Any and all >suggestions are appreciated. My lower back aches when I sit for any >length of time. Could that be related. >Shirley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 The worst symptom of my nerve damage is when something touches my right hand and top of the arm all the way to the elbow area feels like getting a steam burn, and makes my right elbow hurt oh so bad like a vise gripping it. All my fingers on both hands are numb at the first joint. I am getting some grip back in both hands, but the pain and tingling is not improving. Cold water on my right hand is excruciating. dave sailer <d.sailer@...> wrote: for those of you who had permanent nerve damage, i'm wondering what your symptoms in the arm were like at their worst - extent of pain, numbness, etc. I currently have some numbness in the tip of my pinky and pain around the elbow. Shirley Moma wrote: >I am taking Neurontin for the Neuropathy in my hands and arms. Not for the back, and I guess you are right about one hurting because of the other. I am starting to have spasms in the shoulder area, however was sort of expecting that one. I guess I am just beginning to see the seriousness of what was done. Had and excellent doctor, and just wondering the long term affects if anyone else had similar surgery as mine. Thanks > Shirley > >Carlene Farmer <birddog@...> wrote: > wondering why you are taking neurontin--not related to your back, right? i still have nerve damage in one big toe from a laminectomy 10 years ago--they seem to be getting better about that but still they have to do so much cutting that it seems impossible to hit some nerves and also with fusion. > >if you had part of your upper spine fused, i would wonder if that is bothering your low back. if we restrict movement in one area, the others feel it. > >Carlene > > New to group > > >I just had Cervical Laminectomy with Mass Screws. and Fusion C3 thru >C6 Jan. 5th, any advise on Recovery past the two month mark, so far >lots of nerver damage in my hands and arms, feels like steam burns on >my hands and arms, and when I put my right hand in water it makes my >elbow hurt! Any ideas if Neurontin causes chest pain? I have it when >I take it, if I stop taking the chest pain goes away. Any and all >suggestions are appreciated. My lower back aches when I sit for any >length of time. Could that be related. >Shirley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 jim, i have been taking lyrica for about a month. i think it has helped with the nerve pain from my back L3,4,5,S1. but i feel very stoned out and my whole demeanor has changed. i don't feel like myself. have you felt this way. i feel high all the time. especially zoned out right after i take the pill. i take 3 150 mg a day. i would love some feedback from anyone else on lyrica. thanks, marsha Quote Link to comment Share on other sites More sharing options...
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