Guest guest Report post Posted July 10, 2001 Received this email..........thought someone might be able to help her or steer her in the right direction. Nora *********** BEGIN FORWARDED MESSAGE *********** On 7/10/01 at 11:27 AM Carradine <elsee@...> wrote: I have just gotten a computer and this is the first time that I have been to this room. I have a step-son () with Downs Syndrome and I want to learn as much as possible about this thing. I have always been under the impression that children with Downs Syndrome are some of the sweetest people on earth but for some reason has a problem with biting himself and, when he gets upset, he has pushed people. Once, he pushed his grandmother so hard that she skidded several feet on the floor. I think that you acn understand why I would like to learn more about this. Please help and send anything that you can to me ....I would really appreciate it C. *********** END FORWARDED MESSAGE *********** Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 10, 2001 Hello , You might find it helpful some time reading the material at http://www.gentleteaching.com (especially the book, which you can download for free). Don't worry if the specific examples (histories, individual challenges, etc.) are different from the way you would describe your step-son - the _principles and practices_ are relevant to all of us. Dave Wetherow Parksville, BC -----Original Message----- From: Lee Family Received this email..........thought someone might be able to help her or steer her in the right direction. Nora *********** BEGIN FORWARDED MESSAGE *********** ... wrote: I have just gotten a computer and this is the first time that I have been to this room. I have a step-son () with Downs Syndrome and I want to learn as much as possible about this thing. I have always been under the impression that children with Downs Syndrome are some of the sweetest people on earth but for some reason has a problem with biting himself and, when he gets upset, he has pushed people. Once, he pushed his grandmother so hard that she skidded several feet on the floor. I think that you acn understand why I would like to learn more about this. Please help and send anything that you can to me ....I would really appreciate it. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 10, 2001 this is a terrific site. Some one actually put words to what I try to do with my nephew Albert 22/ds. ---- Jill in Mi Take a look at my crocheted flower pages http://www.geocities.com/jabberjavw/index.html Researching:BOYCE, COBB, JOHNSON, TRUTSCH, SCHEPEL, CHASE, GARLOCK RE: Fwd: Chris > Hello , > > You might find it helpful some time reading the material at > http://www.gentleteaching.com (especially the book, which you can download > for free). Don't worry if the specific examples (histories, individual > challenges, etc.) are different from the way you would describe your > step-son - the _principles and practices_ are relevant to all of us. > > Dave Wetherow > Parksville, BC > > -----Original Message----- > From: Lee Family > > Received this email..........thought someone might be able to help her or > steer her in the right direction. > > Nora > *********** BEGIN FORWARDED MESSAGE *********** > ... wrote: > > I have just gotten a computer and this is the first time that I have been > to this room. I have a step-son () with Downs Syndrome and I > want to learn as much as possible about this thing. I have always been > under the impression that children with Downs Syndrome are some of the > sweetest people on earth but for some reason has a problem with > biting himself and, when he gets upset, he has pushed people. Once, he > pushed his grandmother so hard that she skidded several feet on the floor. > I think that you acn understand why I would like to learn more about this. > Please help and send anything that you can to me ....I would really > appreciate it. > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 10, 2002 hi, I am very new to this group.so far I will say I am glad I found it, I have only been going threw this achalasia and dysphagia, since this past september, and it has not gotten any better yet,I have had an upper endo and they dilated my esophogus On November 8th 2001.but still not doing well. I am dropping weight cause I am unable to eat much of anything, I was eating jello and brothes for a while now, I just got some yogurt, I do not really care for yogurt but I am so tired of eating jello. I also got some boost to drink any how ,how long have you been ill? Diane _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 30, 2002 Your post is so true. I have explained this to my friend in my own way. But I still know how she feels... For me, this is not the first medicine I have tried. I guess I know alittle more what AD's are like. I was also fortunate to go on the liquid version of Celexa. I wonder if Lexapro come in liquid...anyone know? I don't think they make Liquid Celexa anymore, last time I checked. It was a life saver for me...as I could go up so slow. I am thinking about Lexapro, still...but just reading and watching. I plan to ask my Doctor when I see him next. He may just want me to stay on Celexa as I seem to be doing well on it. But I trust his wisdom best. He really has been with me on this journey and I think he is a very good p.doc. How about you? Are you currently at 60 mg. Celexa and thinking of taking less Lexapro...to equal the 60mg. C.??? ~dagmar > Dagmar, > > I would imagine it would be hard for many people to start ANY AD if > they have never been on one before, I know it was for me. Many of us > tend to research the drugs before we start, learn the side effect > profiles, the horror stories on the internet, and as a result, > monitor our bodies with hypervigilance first the first sign of > trouble. I guess it is the fear of the unfamiliar, just not knowing > what to expect, plus the stigmatism of a psychotropic drug and fear > of the impact it will have on us as individuals. > > Of course, I am not suggesting your friend's side effects are not > truly present, it is just that the anticipatory anxiety of the drug, > can amplify the sides of any drug. For example, at my dose of Celexa > (60mg), I suffer from sleeping problems, was suffering from nasty > headaches, and suffer from sexual sides. However, I don't get worked > up over them like I used to because I know what to expect, know it > will pass (the headaches)or that it can be treated (sleeping > problems). Even the sexual problems I know I can work around, it > just requires some effort. > > Now, I knew all of this when I first started the drug, but because it > was so new to me, it didn't matter that I knew it, every side effect > terrified me. > > At 10mg of Celexa, for weeks I thought I would die. But now I am up > to 60mg and tolerating it well, even with the sides. > > Good luck to your friend. What are your plans for Lexapro, I know you > were considering it? > > Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 30, 2002 Dagmar, I will stick with the Celexa at 60mg. It has been a few days short of 3 weeks on 60mg now (plus 2.5 weeks at 50mg) and the past 2.5 weeks have been so little anxiety, I actually feel 100% recovered a good part of the time. At the other doses I was still feeling much better, but had more frequent bursts of anxiety (although generally mild) which always reminded me of my illness. The sides stink, but the headaches are diminishing more and more, and the sleeping problems (mostly waking every hour or less and then going back to sleep) are more sporadic, I don't have it every night anymore. Surprisingly, there has even been a slight but noticeable let up in the sexual sides. So, I'll stick with the 60mg and see if the good feelings last. If not, or the sides get too annoying, I'll look into Lexapro, but it will probably be another 5-8 weeks before I'll know for sure. But I feel so well the past couple of weeks, I would not even think of switching, even to reduce the sides, if it continues, and I thought going to 60mg would be a waste of time, most Dr.s will say that 9 times out of 10, going beyond 40 is not worth the trouble on Celexa. Fortunatley, my Dr. is not one of them. He figured it was worth a shot before considering additional drugs (Buspar) to help me get from about 85-90% better to the 100% I want to get to. Chris > > Dagmar, > > > > I would imagine it would be hard for many people to start ANY AD if > > they have never been on one before, I know it was for me. Many of > us > > tend to research the drugs before we start, learn the side effect > > profiles, the horror stories on the internet, and as a result, > > monitor our bodies with hypervigilance first the first sign of > > trouble. I guess it is the fear of the unfamiliar, just not knowing > > what to expect, plus the stigmatism of a psychotropic drug and fear > > of the impact it will have on us as individuals. > > > > Of course, I am not suggesting your friend's side effects are not > > truly present, it is just that the anticipatory anxiety of the > drug, > > can amplify the sides of any drug. For example, at my dose of > Celexa > > (60mg), I suffer from sleeping problems, was suffering from nasty > > headaches, and suffer from sexual sides. However, I don't get > worked > > up over them like I used to because I know what to expect, know it > > will pass (the headaches)or that it can be treated (sleeping > > problems). Even the sexual problems I know I can work around, it > > just requires some effort. > > > > Now, I knew all of this when I first started the drug, but because > it > > was so new to me, it didn't matter that I knew it, every side > effect > > terrified me. > > > > At 10mg of Celexa, for weeks I thought I would die. But now I am > up > > to 60mg and tolerating it well, even with the sides. > > > > Good luck to your friend. What are your plans for Lexapro, I know > you > > were considering it? > > > > Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 Hi When my lupus flared significantly I was on prednison and immuran. Before that I was on plaquenil only and since my body didn't react well to immuran, I am now on prednisone and plaquenil (along with many others:) )I am unfamiliar with the first med you mentioned but in my case, the dr. didn't want me on both immuran and plaquenil. She sure got a wallop of meds for something unknown? Hope you are both feeling better! Amy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 Amy, Thanks so much for your information. May I ask you a question, are you in pain with lupus. My daughter has chronic muscle and joint pain which makes her feels like she is suffocating. She discovered if she drinks any alcoholic products she has horrible pain after about five hours? She is worse in morning and somewhat better at night? Does any of this make sense to you. She is currently suffering from angioedema of the mouth. Thanks for taking the time to listen, please don't hesitate to send your thoughts. Anybody else familiar with this let me know. Thanks. Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 I also have Lupus (for about five years now) and recently was diagnosed with AIH, and thought I would give you what little input I know. The Lupus can definitely cause pain, which can be mild or considerable. I have had times when I could not walk or straigten my arm or fingers. For some people, it is only in their joints, and for others it is in their muscles and joints. Like AIH, the manifestation varies greatly from person to person. I noticed in the past (when I would have an occasional drink, before the liver problems) that the symptoms got considerable worse with alchohol or simply from being up late hours in the night. It is also common to be worse in the morning, according to my doctor. I hope this info. helps. The difficult thing about Lupus is that there is no one test to diagnose it, rather you have to have at least four out of 11 symptoms. If you want more info. about these symptoms, just ask. I know a lot more about Lupus than AIH (which is why I am here, asking questions to everybody else about the liver). My thoughts are with you and your daughter. Kristi > Amy, > Thanks so much for your information. May I ask you a question, are you in > pain with > lupus. My daughter has chronic muscle and joint pain which makes her feels > like she is suffocating. She discovered if she drinks any alcoholic products > she has horrible pain after about five hours? She is worse in morning and > somewhat better at night? Does any of this make sense to you. She is > currently suffering from angioedema of the mouth. Thanks for taking the time > to listen, please don't hesitate to send your thoughts. Anybody else > familiar with this let me know. Thanks. > Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 2002 Dear Yes, lupus can cause inflammation of the joints as does rhuematoid arthritis. Also many folks on this site have it with their AIH. Hopefully the prednisone will help ease that. As for the alcohol, with the meds she's on and depending on the liver, I would certainly avoid it! It would make you feel miserable and the liver can't tolerate it at all if it isn't at 100% and many would say even then it's hurting the liver. Of course of all things I've discovered when we are in a situation where drinks are involved - I have discovered grapefruit juice is very satisfying! I'll have to switch to something else later I know Just can't win around here! Take care. Amy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 2002 I have been diagnosed with AIH but have TERRIBLE joint pain. Sometimes it hurts so much I can't even walk, twist caps off bottles, lift things, etc. The last couple of days have been so bad I can't take it. the pain is unrelenting, my joints are so swollen - my feet look like they are 10 times the size they usually are!! I have to have people help me stand up. They keep telling me to just take Aleve but that does nothing to relieve it. It IS worse in the morning and at night but has recently been steadily getting worse every day. I feel that my doctor is of no help on this. Do you know of anything I could get over the counter or ask my doctor to prescribe to cut this pain?? I would give anything to have ONE day of no pain again.........I can't think hardly at all anymore because of this pain. Randi [ ] Re:Chris I also have Lupus (for about five years now) and recently was diagnosed with AIH, and thought I would give you what little input I know. The Lupus can definitely cause pain, which can be mild or considerable. I have had times when I could not walk or straigten my arm or fingers. For some people, it is only in their joints, and for others it is in their muscles and joints. Like AIH, the manifestation varies greatly from person to person. I noticed in the past (when I would have an occasional drink, before the liver problems) that the symptoms got considerable worse with alchohol or simply from being up late hours in the night. It is also common to be worse in the morning, according to my doctor. I hope this info. helps. The difficult thing about Lupus is that there is no one test to diagnose it, rather you have to have at least four out of 11 symptoms. If you want more info. about these symptoms, just ask. I know a lot more about Lupus than AIH (which is why I am here, asking questions to everybody else about the liver). My thoughts are with you and your daughter.Kristi > Amy,> Thanks so much for your information. May I ask you a question, are you in > pain with > lupus. My daughter has chronic muscle and joint pain which makes her feels > like she is suffocating. She discovered if she drinks any alcoholic products > she has horrible pain after about five hours? She is worse in morning and > somewhat better at night? Does any of this make sense to you. She is > currently suffering from angioedema of the mouth. Thanks for taking the time > to listen, please don't hesitate to send your thoughts. Anybody else > familiar with this let me know. Thanks.> Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 2002 randy....i am aving the same problem... it has brought me to a wheelchair...Ever since my pred level was dropped to 10 mg and immuran 150...it has gotten worse.At first , i took viox, then betral(sp), then steroid shots.. i am seeing a dr next to confirm autoimmune arthritis....rhemetoid arthritis... my symptoms are extreme swelling in knees and going to ankles, very hot and tender .. hard to get up and down .. my feet are beginning to turn up in the in side ... i also take lortab for pains ... talk to your dr about the arthritis , no one should live with that pain ... if he says deal with it ... then give him a good hard kick in the shin and he may understand hehehehehehe take care karen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 2002 Randy Unfortunately, the only thing that has helped my joint pain has been prednisone. I think Ibuprofen is better than aleve, personally, but when the pain is that bad it doesn't really make much of a difference. Even five milligrams of prednisone every other day (which eliminates many of the side effects) has worked better for me than anything over the counter. Are you on prednisone for the AIH? I assumed you weren't because of the pain you are experiencing. I know it's not a great drug to be on, but it sounds like your pain right now is not great either (an understatement, of course). Good luck and keep us informed. Kristi > > Amy, > > Thanks so much for your information. May I ask you a question, > are you in > > pain with > > lupus. My daughter has chronic muscle and joint pain which makes > her feels > > like she is suffocating. She discovered if she drinks any > alcoholic products > > she has horrible pain after about five hours? She is worse in > morning and > > somewhat better at night? Does any of this make sense to you. > She is > > currently suffering from angioedema of the mouth. Thanks for > taking the time > > to listen, please don't hesitate to send your thoughts. Anybody > else > > familiar with this let me know. Thanks. > > Chris > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 Randi..Sounds like you have RA along with your AIH.... go see a rheumotologist who should better help you.... You shouldn't have to live in pain... jerry : ) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 No - my doctor was waiting for the liver biopsy results to come back before he put me on the prednisone/imuran combo. The pain just keeps getting worse though. I get up an hour early, take the Aleve, get back in bed and wait for it to take the edge off the pain. I did not want to take the prednisone but living with this pain is just not an alternative to me anymore...... Thanks for the info. Randi [ ] Re:Chris RandyUnfortunately, the only thing that has helped my joint pain has been prednisone. I think Ibuprofen is better than aleve, personally, but when the pain is that bad it doesn't really make much of a difference. Even five milligrams of prednisone every other day (which eliminates many of the side effects) has worked better for me than anything over the counter. Are you on prednisone for the AIH? I assumed you weren't because of the pain you are experiencing. I know it's not a great drug to be on, but it sounds like your pain right now is not great either (an understatement, of course). Good luck and keep us informed. Kristi> > Amy,> > Thanks so much for your information. May I ask you a question, > are you in > > pain with > > lupus. My daughter has chronic muscle and joint pain which makes > her feels > > like she is suffocating. She discovered if she drinks any > alcoholic products > > she has horrible pain after about five hours? She is worse in > morning and > > somewhat better at night? Does any of this make sense to you. > She is > > currently suffering from angioedema of the mouth. Thanks for > taking the time > > to listen, please don't hesitate to send your thoughts. Anybody > else > > familiar with this let me know. Thanks.> > Chris> > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 I have the same things happening to me but mine is also in my hands and wrists. I cannot grasp things anymore when it is at its worst. Which medication has worked the best for you? It sounds like you have not really found anything that has done the trick either?! My doctor has just told me to take aleve, which only takes the edge off. Randi Re: [ ] Re:Chris randy....i am aving the same problem... it has brought me to a wheelchair...Ever since my pred level was dropped to 10 mg and immuran 150...it has gotten worse.At first , i took viox, then betral(sp), then steroid shots.. i am seeing a dr next to confirm autoimmune arthritis....rhemetoid arthritis... my symptoms are extreme swelling in knees and going to ankles, very hot and tender .. hard to get up and down .. my feet are beginning to turn up in the in side ... i also take lortab for pains ... talk to your dr about the arthritis , no one should live with that pain ... if he says deal with it ... then give him a good hard kick in the shin and he may understand hehehehehehe take care karen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 Randi Ask your physician if you can take Enbrel for the pain in your joints. It helps Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 Jerry: I am sure I do have rheumatoid arthritis - but will it go away when I get the AIH under control? I NEVER had any problems with my joints before - in fact I was very flexible and in good physical health before all this "crap" started! In looking over the available treatments for RA, they all appear to have liver complications. The Aleve just isn't even getting the edge off the pain. I will ask my doctor for a RA specialist to go to and hopefully they have something that is not toxic to the liver!! I can't even DRINK to ease the pain!! Wish I could have a glass of wine once in a while. I really miss that the most......... How I can go from healthy as a horse to this mess of a person just boggles my mind - and TICKS me off!! Randi Re: [ ] Re:Chris Randi..Sounds like you have RA along with your AIH.... go see arheumotologist who should better help you....You shouldn't have to live in pain...jerry : ) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 randi...i took viox, ten betral, and most recently injections....i will be seeing a ra dr on the 22 i'll let you know what happens ...karen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 2002 randy ...i have been on lortab for pain and heat packs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2002 Chris: Thanks for the info. I see him this week so I will check it out. Randi Re: [ ] Re:Chris RandiAsk your physician if you can take Enbrel for the pain in your joints. It helps Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2002 Chris: Thanks for the info. I see him this week so I will check it out. Randi Re: [ ] Re:Chris RandiAsk your physician if you can take Enbrel for the pain in your joints. It helps Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2002 Chris: Are you taking Enbrel yourself? I have heard lots of scary things about it. Of course, I have heard similar scary things about the prednisone too. How has it done for you? Randi Re: [ ] Re:Chris RandiAsk your physician if you can take Enbrel for the pain in your joints. It helps Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2002 It does wonders and is not as bad as prednisone. Two shots a week and the joint pain is so much better. I can't believe it. No reation and I am allergic to multi things. Benn on it over a year with prednisone and sometimes neoral. Chris Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2002 Randi, my doctor gave me Plaquenil for my joint stiffness. It has really helped. I have not been given the diagnosis of RA, but that is what the drug is for. My doctor told me that is the drug of choice to treat RA and Lupus. Does that mean that I have them? I hope not, but the only way to get that dx is to do the labs. I really hope that I DONT have either, because I just don't want to deal with those two diseases. However, since having so many autoimmune diseases, my chances are greater of getting more. I am just going to have to keep a postitive attitude (which is very difficult at times!) But, I am determined to continue working and in order to work, I cannot let my pain get the best of me...although recently, it is really making a big stab at doing it! You might ask the doctor about the Plaquenil and see if they think it would be helpful. My GI is OK with me having it. It will take several weeks to kick in, but I really think it is worth it. Good luck. Debby Re: [ ] Re:Chris Randi..Sounds like you have RA along with your AIH.... go see arheumotologist who should better help you....You shouldn't have to live in pain...jerry : ) Quote Share this post Link to post Share on other sites
