Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 In a message dated 1/4/02 8:29:12 PM Pacific Standard Time, writes: > It surely gets frustrating as they get older especially since we > have dedicated so much of our lives to helping them. Our son is spoiled. > I > have been doing this and more for 26 years. I am definitely tired but keep > > going. I am very frustrated with his meds and program right now but keep > working at finding a better situation Judy, this caught my eye! I can truly relate, although little is just 8, we've been changing med's for over 3 years now, and 's no better than the first day we started this! He seems to do good for a little while, then builds up an immunity to any and all med's........so we up them and he gets worse.....back and forth...... I am now in process of trying a med or med's we've used in the past, since it's been some time since he's taken them. I just get tired of notes from the teacher saying how bad he's been when I know he doesn't mean to be that way, that's what's so sad about it all.......you can see it in his eyes, like he's possessed, yet, when the med's work somewhat, he is a different, sweet, loving attentive child. Oh well, going to bed and stop rambling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Hi Thanks for responding. I think that some teachers that I have met over the years don't have a clue as how to read these children/adults. They get close to the kids and then just disappear. Our kids act out and get a bad label, hello... Staff changes in our population now are always changing and they wonder why our kids act out. Also. I recently found that our son was just riding around in a van all day. When he wet himself for not being taken to the bathroom he was told he was bad. He told them he needed to change his clothes so he stripped. Now he is receiving yet another label. I'd like to sit down and have the time to just write a book on all that has happened to our family over the 26 years. Yes, a lot of positive things but also many things that most people have no clue about. The average person hasn't a clue what a problem is until they step into our shoes. I truly love my son and take the very best of care of him. I just wish I could get the same help for him when he is away from us. The programs after school years are not what I expected. Yes there might be a good one, but they don't put enough money into these adult programs and they wonder why they get people that don't do their jobs. Two people got fired because of what I mentioned above. I did have one teacher tell me she was sorry after she had her kids that she had told me to do this, or do that. The school years were very good for us. It was when we went into the adult programs that we started getting into trouble. Now I have to deal with discrimination that things got bad. Many programs only want the ones that are calm. They don't want the ones that express themselves or need a lot of structure and activity to do well. Oh well, I'll just keep plugging along as best as we can. My son has only been to his program once in the last three weeks because of staff problems, their vacations etc. I hope that someday someone at the medicaid waiver program will put some pressure on these programs to do a better job. Afterall, a lot of money was spent on educating these kids only to be put into adult programs that are become like the meds " trial and error " . If it hadn't been for the love that I have received from my son over the years I guess I would be nuts. We all go through a lot. I find that it is worth it when I get those very special hugs and he tells me he loves me. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 can anyone tell me why slow release is not good ? thanks g hi judy I just started on ldn I don t feel much difference maybe a little more energy the druggist who made it up said he made it with slow release do you know if it should be fast release /? glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 You want an immediate release so that it will block your endorphins. If it is slow release then it only does a little at a time. It won't work to trick your body into producing a ton of endorphins, which is the goal. That is an overly simplified non-medical way of putting it. And not all agree that is the way LDN works. But that is my understanding. Aletha hi judy I just started on ldn I don t feel much difference maybe a little more energy the druggist who made it up said he made it with slow release do you know if it should be fast release /? glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 I am a newbie. How can I get a list if compounding druggists? Thanx. Harvey From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Aletha Wittmann Sent: Thursday, January 31, 2008 1:53 PM To: low dose naltrexone Subject: Re: [low dose naltrexone] Fw: hi judy You want an immediate release so that it will block your endorphins. If it is slow release then it only does a little at a time. It won't work to trick your body into producing a ton of endorphins, which is the goal. That is an overly simplified non-medical way of putting it. And not all agree that is the way LDN works. But that is my understanding. Aletha hi judy I just started on ldn I don t feel much difference maybe a little more energy the druggist who made it up said he made it with slow release do you know if it should be fast release /? glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 thanks i wasn t aware when i ordered it that there was a difference linda hi judy I just started on ldn I don t feel much difference maybe a little more energy the druggist who made it up said he made it with slow release do you know if it should be fast release /? glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 Hi , It's important that you only block the opiate receptor intermittently with naltrexone. The duration of the blockade is very important with using low dose naltrexone. The idea here is that after the short blockade, the production of endorphins and enkephalins will increase a great deal (in response to the short period of blockage). With timed release pills, you have a continuous blockade of the receptor and that defeats the purpose of taking LDN. Hope this helps, Elaine Read my articles at http://spas.suite101.com/ http://autoimmunedisease.suite101.com and www.elaine-moore.com/gravesdisease/ and read more about me at www.elainemoore.net If we single-pointedly practice great compassion, then, with little effort, we will be able to gain all other virtues-Geshe Namgyal Wangchen, "Awakening the Mind" [low dose naltrexone] Fw: hi judy can anyone tell me why slow release is not good ? thanks g hi judy I just started on ldn I don t feel much difference maybe a little more energy the druggist who made it up said he made it with slow release do you know if it should be fast release /? glover More new features than ever. Check out the new AOL Mail! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hi Ken, I am still on LDN after 4+ months and the results are not as good as they were initially, but I’m not giving up. I got a real boost and a lot of pain relief up front, and then things started to regress. I’ve been in a bit of a flare for the past couple of weeks, but it does seem to be getting better now. I went all the way up to 4.5 and then stepped back to 3.0, which is a better dose for me as far as I can see. As for the dreams, I believe that’s connected to the sleep issues. I had those for about 6 weeks and then things settled down. Now I sleep fine and don’t think my dreams are much different than before, though I may remember them better. I would certainly not use that as a reason to not try LDN. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Sorry to hear about your asthma development. I have asthma too, since a child. As if you didn't have enough to deal with already! And stress always makes it worse. I hope your symptoms remain under control. I should be finding out about my RA test by Friday this week, and I will let you know how it turns out. I am pretty convinced that RA what has been wrong with me for the last five years. Thanks for supporting me. Hugs Back, Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Hi Judy, I read your post and can relate, somewhat, to what you’re going through, as I had to have some of my hardware out last year (at age 53), four years after my revision surgery in New York. But my situation was less complicated than yours, and if my surgeon had told me he would have to do the entire surgery over, I would have collapsed right then and there. I had to have half of one rod removed along with its accompanying screws because the screws were migrating through my skin and were practically at my skin’s surface. I’d developed bursitis around each one, which was painful – but I also would screech with pain when I sat and the screws hit the back of a chair. The surgery was relatively minor – I was in the hospital for only two or three days, and I didn’t need to go home on morphine, as I did after my revision procedure. But still, it was no picnic. Like you, I was told, prior to surgery, that if the surgeon found an allergy to the hardware, he’d have to take it all out. So I understand your worry and despair, having experienced it myself. Fortunately, I had no allergy. And here you are, facing essentially a re-do of your revision surgery. You must be beside yourself. I really feel for you. I feel for all of us. As I get older I see how most people take their good health as a given, and how they freak out when things (usually requiring non-invasive treatment) start to go wrong. Those of us with scoli have been dealing with its repercussions since we were children. We’ve been through so much – and usually quietly. I didn’t define myself by my health until five years before my revision, when I started to develop terrible pain and the beginnings of flatback syndrome. But since my revision, I feel like my poor health defines my life. It limits me in so many ways. I know others have had a better response to their revisions – and many have had a worse response – and I know we’re all different in that regard. But after so many years, all of it takes an emotional toll. I’m with you, Judy – the only time it will stop is the day I die. In the meantime, I take solace in the things that give me pleasure – my marriage, friendships, cats, craft and writing projects, sunny days, warm ocean water, an occasional gin and tonic, and always eating out at a good restaurant. I hope you have pleasure in your life – and I hope it gives you comfort as you go through these hard times. Best Wishes, Andy Stanton Boulder CO Hi guys, I'm Judy. I had my revision surgery done by Dr. LaGrone in 2001. I had an excellent recovery and went on my merry way. .. Quote Link to comment Share on other sites More sharing options...
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