Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Hi Kathy, Dr. Jenike has often mentioned on the OCD-L that if symptoms increase when starting an SSRI it often means that the SSRI is going to be particularly effective. Hope things get much better soon. Louis ocdnet@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 My son tried Prozac for 8 weeks when he was 9. He totally flipped out on it. He had severe rage attacks; reverted to " baby-like " actions - laying on the floor out in public, wanting to go on kiddy rides at the mall; was destructive in our home and needed to be physically restrained to settle him down. Each episode ended with him sobbing and seeming to have little or no memory of his actions - he required soothing and cuddling to settle his tears. Needless to say we took him off it. Also he tried Buspar, Clomipramine, Lorazepam, Haldol, and a few more. He has stayed medication free until 3 weeks ago. He has been antagonistic, irritable and stressed out lately - maybe due to school. His psychiatrist convinced us to try Ativan in small doses - we're scared to death but we will give him 6 weeks trial and keep our fingers crossed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Hi Kathy: My son also had BSEs (behavioral side effects) with his SSRI, and his symptoms got way worse, and so did his depression. Luckily his then-psychiatrist pointed out this can happen and I have read on some other lists (where the OCD experts post) that this initial worsening is actually a sign that a positive response to the medication can be expected. Of course, I am not a doctor, and you have to keep watch to see that things do not become totally unmanageable. Does your daughter have a lot of anxiety? She may be helped with some medication to address this directly. My son's current psychiatrist has prescribed Klonopin for high anxiety moments as we are adjusting his meds. So far we have not had to fill the prescription but I have been in contact with other parents whose kids take a combination of meds. On Saturday when we saw my son's psychiatrist he attributed my son's last self harm behaviors to adjusting to having his medication dosage dropped. Sorry if all my information is anecdotal. It took my son about six weeks to respond to the medication for his depression and about 12 weeks to respond (not sure if it was the CBT instead) for his OCD. Please hang in there, the time seems interminable but minute by minute you will get through this. Good luck, take care, aloha, Kathy (H) You wrote: >My daughter, 5, has only been on prozac for 10 days and I understand that it takes much long than this to know if it will help her OCD symptoms. But, these last few days she is worse than previously with her compulsions, she is constantly performing them now and there are many new ones daily. Plus she has started doing things to hurt herself--pinching, grabbing skin on her belly and twisting, banging her head hard with her hand, banging her head into a brick wall we have in our home, and most upsetting, pushing small toys or her finger into her eyes. (One of her major obsessions involves cutting out her eyes.) > >Did anyone else's child get temporarily worse on Prozac? How long did this effect last? > >Kathy R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Hi Kathy R, My 6 year old son had problems with Prozac also. I wish someone would have told me that if the symptoms become worse it means the med may possibly be effective. I would love to be able to have him on Prozac again. It literally opened him up. Within the first week his speech became clearer, he started dressing himself, and we started having luck with potty training. He became much more social, speaking to people he didn't even know, this was amazing since he also has severe stranger and separation anxieties. For the first time we noticed what a good sense of humor he had. He just blossomed, he seemed so " normal " . Just typing this and thinking of how he was brings tears to my eyes. Prozac released the beautiful child that is hidden deep inside of him. The reason he was taken off the Prozac is because he also became increasingly aggressive and started expressing his desire to hurt things. He told started hurting his siblings and he became somewhat defiant. The final straw came when he told his TSS worker that he was going to hit her in the stomach and kill her baby. His behavioral specialist was here also and they felt that he was possibly becoming a danger. It was really odd because he is absolutely crazy about babies. It was the total opposite of the way he normally reacts. I still feel this was due to the impulsivity and hyperactivity not being controlled. When the doctor started the Prozac he took him off Dexedrine. Our doctor insists they can not give him the 2 meds together. This could be due to his poor health, he never really clarified the reason. All I know is that for the first time in his life he was so happy, he was so alive and eager to meet life head on. He is on Wellbutrin and Catapres now. They help to a degree but he still gets terribly " stuck " on things. He is still checking doors, and the anxieties have not gotten much better at all. He has stopped pulling out his hair but he still pulls fuzz out of the carpet and rubs it under his nose repeatedly, eventually putting it in his mouth and sucking on it. He is scheduled for more psychological testing March 3. The psychologist has reserved the day to work with him. He has some concerns about the way things are going but they are hesitating to change meds in the middle of a school year. I agree with this but can't help but think that it mean another half a year of his life wasted. Kay D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 My husband has been on prozac for about 2 years. It has helped him a lot with no side effects except for decreased sex drive. My daughter who has mild ocd,(obsessions w/o compulsions)and depression is also on 20mg a day since December. It has been wonderful for her. She seems totally normal on the drug so far. She has no side effects. She started getting better after about 6 days on it. Good luck Judy >From bounce---72-judykw32=hotmail.comonelist Tue Feb 9 16:57:08 1999 >Received: (qmail 26419 invoked by alias); 10 Feb 1999 00:58:37 -0000 >Received: (qmail 26384 invoked from network); 10 Feb 1999 00:58:36 -0000 >Received: from unknown (HELO mail.netdirect.net) (204.120.164.7) by pop.onelist.com with SMTP; 10 Feb 1999 00:58:36 -0000 >Received: from jpgroves (p16-term7-in.netdirect.net [209.212.200.144]) by mail.netdirect.net (8.9.0/8.9.0) with SMTP id TAA05978 for <onelist>; Tue, 9 Feb 1999 19:56:58 -0500 (EST) >Message-ID: <001c01be5490$53605ac0$90c8d4d1@jpgroves> >From: " Kathy " <klr@...> ><onelist> >Date: Tue, 9 Feb 1999 19:57:25 -0500 >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3155.0 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3155.0 >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto:-unsubscribeONElist> >Reply-to: onelist >Mime-Version: 1.0 >Content-Type: multipart/alternative; boundary= " ----=_NextPart_000_0019_01BE5466.69CA1000 " >Subject: prozac > >My daughter, 5, has only been on prozac for 10 days and I understand = >that it takes much long than this to know if it will help her OCD = >symptoms. But, these last few days she is worse than previously with = >her compulsions, she is constantly performing them now and there are = >many new ones daily. Plus she has started doing things to hurt = >herself--pinching, grabbing skin on her belly and twisting, banging her = >head hard with her hand, banging her head into a brick wall we have in = >our home, and most upsetting, pushing small toys or her finger into her = >eyes. (One of her major obsessions involves cutting out her eyes.) > >Did anyone else's child get temporarily worse on Prozac? How long did = >this effect last? > >Kathy R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 Hi, My son was sensitive to prozac right away, his Dr. removed him after just a few days because he also became worst. I think the hardest part about medications is the trials and error. Take care, Serena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 HI: I did want to clarify that my son did have these BSEs, e.g. increased violence (throwing sharp metal toys at his brother, spitting at and hitting me, etc.) as well as being very oppositional. This we treated with a professional parenting program with points for good behaviors, points taken off for bad behaviors, chores to earn points, treats to be won by cashing in points won, and sent to his room when his points total for the day was at minus 10 or lower (only to come out when doing chores to earn points). This behavior mod program took a lot of time, effort and commitment. We had a card with predetermined positive and negative consequences for his behaviors and kept tally all day long for months. Basically we were trying to teach our son that no matter what his behavior and why he was behaving that way (even medication side effects) we expected him to try to control it. Everything was much confusion with the violent obsessions which my son obviously had. Also his suicidal behavior made us very anxious that he would harm himself because he would see this program (which is so different from our usual laissez faire parenting style) as proof we no longer loved him. Luckily this didn't happen. It really taught us to focus on and praise his good behaviors (and these were very hard to find at first) and that was a very helpful part of the program for us too. Kay, you are describing a good response (in many ways) to Prozac by your son. Wellbutrin and Catapres are not first line meds for OCD (I am not a doctor) from what I have read. You may want to try Prozac again, particularly titratinig up very slowly on the liquid form. I think that the reason my son had such severe BSEs to his Paxil was that he was catapulted up to the maximum dose in a few weeks which was too much strain on his system. I would never let this happen again. We just didn't know any better and were frantic and desperate because his OCD was so severe he was not functioning. We are fiddling with my son's meds now right in the middle of school and that can seem a bit reckless. Now we know getting his OCD under control is more important than his education, his socialization and almost anything else except helping him feel loved, adored, valued and accepted by his family. We have found that dealing with problems which can be attributed to medication changes, or OCD symptoms is very hard, but not nearly as hard as when we didn't have a clue what was going on and we were going crazy with worry and uncertainty about what was happening with our son. Kay, I am just an OCD-mom, but I would hazard a bet that your son's comment about harming a baby was a result of his having a violent obsession and, being young and having little insight into his OCD, he just shared that worry with you all. Unfortunately for those with violent obsessions they typical fear harming those most dear to them, so it is very possible that he would have violent obsessions about babies since he loves them so much. My son has had several violent obsessions about killing his father and me, we only know because he showed us the 8 " carving knife in his school bag and was shaking and shaking with fear. If I hadn't read about this I would have credited it. We just did ERP with the knife and he seems to suffer much less from these kinds of obsessions (as far as we know, which is not very far at all). Kay, you might want to consult with a very experienced child psychopharmacologist about the different meds your son needs. Basically I have come somewhat to terms with the idea that my son is an experiment with his medication and I think in a complicated situation when several meds are needed you might have to find a very good experimenter. Good luck, take care, aloha, Kathy (H) Kay wrote: >My 6 year old son had problems with Prozac also. I wish someone would >have told me that if the symptoms become worse it means the med may >possibly be effective. I would love to be able to have him on Prozac >again. It literally opened him up. Within the first week his speech >became clearer, he started dressing himself, and we started having >luck with potty training. He became much more social, speaking to >people he didn't even know, this was amazing since he also has severe >stranger and separation anxieties. For the first time we noticed what >a good sense of humor he had. He just blossomed, he seemed so > " normal " . Just typing this and thinking of how he was brings tears to >my eyes. Prozac released the beautiful child that is hidden deep >inside of him. > >The reason he was taken off the Prozac is because he also became >increasingly aggressive and started expressing his desire to hurt >things. He told started hurting his siblings and he became somewhat >defiant. The final straw came when he told his TSS worker that he was >going to hit her in the stomach and kill her baby. His behavioral >specialist was here also and they felt that he was possibly becoming a >danger. It was really odd because he is absolutely crazy about babies. >It was the total opposite of the way he normally reacts. I still feel >this was due to the impulsivity and hyperactivity not being >controlled. When the doctor started the Prozac he took him off >Dexedrine. Our doctor insists they can not give him the 2 meds >together. This could be due to his poor health, he never really >clarified the reason. All I know is that for the first time in his >life he was so happy, he was so alive and eager to meet life head on. > >He is on Wellbutrin and Catapres now. They help to a degree but he >still gets terribly " stuck " on things. He is still checking doors, >and the anxieties have not gotten much better at all. He has stopped >pulling out his hair but he still pulls fuzz out of the carpet and >rubs it under his nose repeatedly, eventually putting it in his mouth >and sucking on it. He is scheduled for more psychological testing >March 3. The psychologist has reserved the day to work with him. He >has some concerns about the way things are going but they are >hesitating to change meds in the middle of a school year. I agree >with this but can't help but think that it mean another half a year of >his life wasted. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 Dear Kay, I will share with you a little of our experience with Prozac and my daughter. Her side affects at first seemed very much like symptoms of hyperactivity. She went from being a mellow, gentle person to being very aggressive and impulsive. She has a cat that she has raised from kittenhood, that she loves very much and was always very gentle and loving with. When she started taking the Prozac, she also started chasing the cat around the house, pulling its tail, provoking fights and once even throwing the cat into a tub full of bathwater. She had new cat scratches on her face and body nearly every day for a while. As you can imagine, we were freaking out. On the other hand, her OCD sypmtoms were improving and decreasing by leaps and bounds. We saw her enjoying life for the first time in about a year and a half. We chose to continue the medication for at least twelve weeks and use parenting techniques to control the BSE's. We became very firm with her that, although the medicine was causing her to behave in these ways, they were controllable and were not acceptable. After five months on Prozac her side affects are way down. Even her teacher has noticed her improved impulse control. How much of this is due to our work with her and how much to her body adjusting I don't know. She takes a very small dose (4mg.) which has been raised only once since she started on it. (She is 5 so only weighs about 45 lbs.) Good luck to you, Lesli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 1999 Report Share Posted February 12, 1999 Hi Kay, I've been wanting to respond to your post about how your son was while on Prozac. It brought tears to *my* eyes when you described him as " so normal. " That's what we've been missing around our house these past two months since our daughter " came down " with OCD, and I think it's what I'm grieving most of all in all this. I am brand-new at being an OCD mom, just finding out about this disorder, learning to deal with the doctors, counselors, medications, etc. With that said, I'd like to tell you that what you described as the last straw, your son saying he wanted to hurt the counselor's baby, is mild stuff compared to what my daughter obsesses about many many times daily. She describes horrible mutilations to herself, to her Dad and me, her teachers, strangers walking past the house, etc. She says she really wants to do these things. For two months we all have been trapped inside a horror movie. Since she started on Prozac (two weeks ago) these have intensified. But her psychiatrist has " promised " me that children with OCD with these types of obsessions never act on them, that they have a type of scrupulosity (because of the disorder) that makes them less likely than the average child to act out in aggressive ways. I hope he's right. Yet you say your son became aggressive after beginning the medication. Did the violent obsessions start after starting Prozac too? Perhaps your son didn't have a long enough trial on Prozac--my daughter's psychiatrist suggested two months, unless she had dramatic side effects that couldn't be handled. Please understand I'm not encouraging that your son take Prozac (so far all we've seen is a worsening of the OCD symptoms! but now I know this is normal) but it seems a shame that you had to take him off a medication that did so much for him. Kathy R. Re: prozac >From: Kay <alilnutty@...> > >Hi Kathy R, > >My 6 year old son had problems with Prozac also. I wish someone would >have told me that if the symptoms become worse it means the med may >possibly be effective. I would love to be able to have him on Prozac >again. It literally opened him up. Within the first week his speech >became clearer, he started dressing himself, and we started having >luck with potty training. He became much more social, speaking to >people he didn't even know, this was amazing since he also has severe >stranger and separation anxieties. For the first time we noticed what >a good sense of humor he had. He just blossomed, he seemed so > " normal " . Just typing this and thinking of how he was brings tears to >my eyes. Prozac released the beautiful child that is hidden deep >inside of him. > >The reason he was taken off the Prozac is because he also became >increasingly aggressive and started expressing his desire to hurt >things. He told started hurting his siblings and he became somewhat >defiant. The final straw came when he told his TSS worker that he was >going to hit her in the stomach and kill her baby. His behavioral >specialist was here also and they felt that he was possibly becoming a >danger. It was really odd because he is absolutely crazy about babies. >It was the total opposite of the way he normally reacts. I still feel >this was due to the impulsivity and hyperactivity not being >controlled. When the doctor started the Prozac he took him off >Dexedrine. Our doctor insists they can not give him the 2 meds >together. This could be due to his poor health, he never really >clarified the reason. All I know is that for the first time in his >life he was so happy, he was so alive and eager to meet life head on. > >He is on Wellbutrin and Catapres now. They help to a degree but he >still gets terribly " stuck " on things. He is still checking doors, >and the anxieties have not gotten much better at all. He has stopped >pulling out his hair but he still pulls fuzz out of the carpet and >rubs it under his nose repeatedly, eventually putting it in his mouth >and sucking on it. He is scheduled for more psychological testing >March 3. The psychologist has reserved the day to work with him. He >has some concerns about the way things are going but they are >hesitating to change meds in the middle of a school year. I agree >with this but can't help but think that it mean another half a year of >his life wasted. > >Kay D > > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 1999 Report Share Posted February 12, 1999 My 17 year old daughter was diagnosed with OCD/depression two years ago. I don't know if meds prescribed to adolescents can be prescribed to young children, but my daughter responded very well to serzone and risperdol for almost 15 months and recently switched to Luvox - she's only been taking Luvox for a month, but she seems to be tolerating it well. I can't begin to empathize with the few situations I've read here as my daughter began exhibiting symptoms (minor compared to what I've read) in adolescence, but I do pray for your child's recovery. On another note, my 9 year old nephew has been institutionalized for almost 15 months - diagnosed with various psychoses (sp) but after reading info from ocd and parenting, I think he may suffer from OCD (hoarding, paranoia, insomnia, bedwetting, inappropriate thoughts - but he has acted on them on two occasions) - am I way off base here? Re: prozac >From: Kay <alilnutty@...> > >Hi Kathy R, > >My 6 year old son had problems with Prozac also. I wish someone would >have told me that if the symptoms become worse it means the med may >possibly be effective. I would love to be able to have him on Prozac >again. It literally opened him up. Within the first week his speech >became clearer, he started dressing himself, and we started having >luck with potty training. He became much more social, speaking to >people he didn't even know, this was amazing since he also has severe >stranger and separation anxieties. For the first time we noticed what >a good sense of humor he had. He just blossomed, he seemed so > " normal " . Just typing this and thinking of how he was brings tears to >my eyes. Prozac released the beautiful child that is hidden deep >inside of him. > >The reason he was taken off the Prozac is because he also became >increasingly aggressive and started expressing his desire to hurt >things. He told started hurting his siblings and he became somewhat >defiant. The final straw came when he told his TSS worker that he was >going to hit her in the stomach and kill her baby. His behavioral >specialist was here also and they felt that he was possibly becoming a >danger. It was really odd because he is absolutely crazy about babies. >It was the total opposite of the way he normally reacts. I still feel >this was due to the impulsivity and hyperactivity not being >controlled. When the doctor started the Prozac he took him off >Dexedrine. Our doctor insists they can not give him the 2 meds >together. This could be due to his poor health, he never really >clarified the reason. All I know is that for the first time in his >life he was so happy, he was so alive and eager to meet life head on. > >He is on Wellbutrin and Catapres now. They help to a degree but he >still gets terribly " stuck " on things. He is still checking doors, >and the anxieties have not gotten much better at all. He has stopped >pulling out his hair but he still pulls fuzz out of the carpet and >rubs it under his nose repeatedly, eventually putting it in his mouth >and sucking on it. He is scheduled for more psychological testing >March 3. The psychologist has reserved the day to work with him. He >has some concerns about the way things are going but they are >hesitating to change meds in the middle of a school year. I agree >with this but can't help but think that it mean another half a year of >his life wasted. > >Kay D > > > >----------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 1999 Report Share Posted February 12, 1999 Hi Kathy, You asked if 's violent obsessions started with Prozac. I would be prone to say that Prozac helped him express feelings he was already having. He was pulled off the Prozac because there was concern about what he could be capable of doing due to past incidents. My younger son has ended up in the emergency room more than once due to being " attacked " by . He always seems to aim towards the face, scratching, slapping,and hitting until restrained. He knocked me backwards out of our travel trailer door when he was in one of his rages. He is only 6. I'm little but very solidly built. He went through a head banging stage. It wasn't so bad in the beginning, we just put a pillow under his head. Eventually he became obsessed with slamming his head off the glass windows and glass front to our curio. This had been pretty much under control until the Prozac was tried. I truly don't feel that he wants to hurt anyone. I would tend to think it is impulse but I am aware that it could be something that the OCD has triggered. What parent wants to believe their child capable of hurting someone or themselves on purpose? It has seen like a roller coaster ride most of his life. I can only imagine how it must feel for him. It must be awful. Last night we noticed his Trich seems to be reappearing, we noticed him pulling out his eyebrow hair. His teacher in the morning says he is impulsive and distracted. There are 20 children in her class and not one aide. This morning his doctor and I had a long chat. He is calling the head of special education and requesting an aide for . When we met his teachers for the 1st report card we noticed a BIG difference between his 2 classes, regular kindergarten was very poor, developmental kindergarten was great. There are only 5 children in the dev. kind., a teacher and an aide. Is it any wonder he can do better? We were shot down when we requested an aide. It did get his reg.kind. teacher to push him harder. He is now pulling his own with that class. Just think how well he could do if he wasn't distracted! Sorry to ramble, consider yourselves lucky that I have to leave in a few for a doctors appointment LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 1999 Report Share Posted February 12, 1999 Hi Faith: I am glad to hear your daughter is doing well and that she is responding so well to Luvox. Sorry to hear about your nephew's struggles with his OCD. Regarding aggressive/difficult behavior with kids with OCD, I was told by my son's first psychiatrist, when I asked, that this does happen with some kids. I have also read a posting by Dr. March regarding this, leading me to believe it is not uncommon at all in kids. It would be nice if all our OCD kids were like Dr. Rapapport's patients in " The Boy Who Couldn't Stop Washing His Hands " . In my son's case these problems improved pretty much as he adjusted to his SSRI. Regarding violent obsessions, it has been true that he does not act on these no matter how much agony they cause him and we have found ERP quite helpful with this. The aggressive behavior has been, in our experience, more a result of BSEs from the medication and also his anger at the unfairness of having OCD, being different, feeling out of control and needing to adjust to the hard reality of his disorder, and possibly to being a preteen in a hurry to grow up. BTW in addition to OCD/depression, my son is also diagnosed PTSD-Type 1 and I know that some suffering from this disorder have difficulties dealing with agression at times. Take care, aloha, Kathy Faith wrote: >My 17 year old daughter was diagnosed with OCD/depression two years ago. >I don't know if meds prescribed to adolescents can be prescribed to >young children, but my daughter responded very well to serzone and >risperdol for almost 15 months and recently switched to Luvox - she's >only been taking Luvox for a month, but she seems to be tolerating it >well. I can't begin to empathize with the few situations I've read here >as my daughter began exhibiting symptoms (minor compared to what I've >read) in adolescence, but I do pray for your child's recovery. > >On another note, my 9 year old nephew has been institutionalized for >almost 15 months - diagnosed with various psychoses (sp) but after >reading info from ocd and parenting, I think he may suffer from OCD >(hoarding, paranoia, insomnia, bedwetting, inappropriate thoughts - but >he has acted on them on two occasions) - am I way off base here? > > > Re: prozac > > >>From: Kay <alilnutty@...> >> >>Hi Kathy R, >> >>My 6 year old son had problems with Prozac also. I wish someone would >>have told me that if the symptoms become worse it means the med may >>possibly be effective. I would love to be able to have him on Prozac >>again. It literally opened him up. Within the first week his speech >>became clearer, he started dressing himself, and we started having >>luck with potty training. He became much more social, speaking to >>people he didn't even know, this was amazing since he also has severe >>stranger and separation anxieties. For the first time we noticed what >>a good sense of humor he had. He just blossomed, he seemed so >> " normal " . Just typing this and thinking of how he was brings tears to >>my eyes. Prozac released the beautiful child that is hidden deep >>inside of him. >> >>The reason he was taken off the Prozac is because he also became >>increasingly aggressive and started expressing his desire to hurt >>things. He told started hurting his siblings and he became somewhat >>defiant. The final straw came when he told his TSS worker that he was >>going to hit her in the stomach and kill her baby. His behavioral >>specialist was here also and they felt that he was possibly becoming a >>danger. It was really odd because he is absolutely crazy about babies. >>It was the total opposite of the way he normally reacts. I still feel >>this was due to the impulsivity and hyperactivity not being >>controlled. When the doctor started the Prozac he took him off >>Dexedrine. Our doctor insists they can not give him the 2 meds >>together. This could be due to his poor health, he never really >>clarified the reason. All I know is that for the first time in his >>life he was so happy, he was so alive and eager to meet life head on. >> >>He is on Wellbutrin and Catapres now. They help to a degree but he >>still gets terribly " stuck " on things. He is still checking doors, >>and the anxieties have not gotten much better at all. He has stopped >>pulling out his hair but he still pulls fuzz out of the carpet and >>rubs it under his nose repeatedly, eventually putting it in his mouth >>and sucking on it. He is scheduled for more psychological testing >>March 3. The psychologist has reserved the day to work with him. He >>has some concerns about the way things are going but they are >>hesitating to change meds in the middle of a school year. I agree >>with this but can't help but think that it mean another half a year of >>his life wasted. >> >>Kay D > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 In a message dated 1/6/00 4:27:32 PM Eastern Standard Time, onelist writes: > symptoms of depression it may be an A-typical depression and also > > because Prozac is " proven " to help CFS. > > I would love to know where this has been " proven " . I did a medline > search and found no proof there. One study found: Yeah, where has this been proven? Many PWCs can't tolerate stimulative anti- depressants. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Studies by Deluca and others have shown that at most, 50 percent of PWC's suffer from secondary depression. SOME of those patients are helped by Prozac. What it does, however, is help the depression -- it does nothing for the CFS/M.E. symptoms (except that it alleviates some of the stressors, which is always helpful in a chronic illness). Speaking as someone who has run and participated in discussion groups for five years, I'll have to say that I don't know very many PWC's who do well on Prozac. There is a larger group of us who are helped by Zoloft (which I'm coming off of now!) -- it seems to be a milder SSRI. But Prozac seems to stimulate patients too much. I believe there was a recent study in England (of all places) that concluded Prozac is NOT a good choice for M.E. However -- for over two decades, the " expert " at the NIH for CFS studies was Straus ... whose principal coauthor, Mark Demitrack, is an executive with Eli Lilly ... which makes Prozac. If you go to the NIH website, you will find Prozac listed as the only drug that is known to help CFS symptoms!!!!! I mean, it's not even subtle. I find it amusing that Straus is a virologist playing at being a psychologist (with his current emphasis on " stress " ) and that doesn't seem to bother anybody except us patients. Good news for us, I guess, that he's been lateral arabesqued over to Alternative Medicine (how is he going to reconcile pushing Prozac with that??) -- bad news for people genuinely interested in Alternative Medicine. Note: with Straus shifted to a different agency, funding for CFS at NIAID will plummet. At least, the APPEARANCE of funding for CFS will plummet ... we ought to do something with that politically. Schweitzer mailto:Schweit2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Prozac does help me, but my depression predated my sudden onset DD by many years. By helping the depression, it has made it very clear to me that what is left over is the DD. I wish I could replace it with other things though. Before the DD, I read a book on depression that recommended tryptophan and tyrosine. It said not to use tryptophan if you were a person who slept a lot, so I only tried tyrosine and it helped. Lately I've read that tyrosine also helps with thyroid problems. For a while, I was on 20 mg Prozac and 300 mg St 's Wort which seemed to be working for me in spite of warnings that this is a dangerous combo. Then I swithed to 5HTP and prozac which didnt seem to work as well for me, should have tried increasing the 5htp dose but instead went back to 40 mg prozac. Maybe the St 's was better because its also anti-viral. Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 are you concidering any of the nest generation of anti-deprssants? Beverly wrote: > Prozac does help me, but my depression predated my sudden onset DD by many > years. By helping the depression, it has made it very clear to me that what > is left over is the DD. I wish I could replace it with other things though. > > Before the DD, I read a book on depression that recommended tryptophan and > tyrosine. It said not to use tryptophan if you were a person who slept a > lot, so I only tried tyrosine and it helped. Lately I've read that tyrosine > also helps with thyroid problems. For a while, I was on 20 mg Prozac and 300 > mg St 's Wort which seemed to be working for me in spite of warnings > that this is a dangerous combo. Then I swithed to 5HTP and prozac which > didnt seem to work as well for me, should have tried increasing the 5htp > dose but instead went back to 40 mg prozac. Maybe the St 's was better > because its also anti-viral. > > Beverly > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 >Steve wrote: >are you concidering any of the nest generation of anti-deprssants? > I'm definitely interested in exploring alternatives. Don't know much about them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 , I'd like the citation for the DeLuca study (and the et als.) that show that 50% only suffer secondary depression. I also wonder if they determined, or can determine/distinguish those that may have primary depression NOT as a cause of ME but as another disease along with it. I think that's hard as all get out but I'd sure like to see what some pro's have said, if the have. If you don't have it, when I can I'll do a Medline search. Also, do you have the url for the NIH site that says Prozac is the SSRI to give us. Egads and egads. We have so far to go it's appaling and daunting. Also, do you know a route to finding the study in England that contradicts that position. I'm interested. This depression thing is so retarding to our progress even though it has to be comprehended and treated where it does exist for whatever reason, as long as our clinicians and scientists point to the evidence that treating it doesn't cure cfs. I've also long believed that the pre-morbid depression rates which they say (they say research shows is elevated among us) might in some considerable measure (no, I think it's not depression but psychiatric morbidity in general) the result of our having gotten sick with this slowly even though we eventually have a dramatic moment which we call sudden impact. And that the slow decline in our health is treated as psychosomatic, the wastebasket diagnosis given when symptoms can't be explained (diagnosed) and some of us become slaves to psychiatric treatment, from therapy to drugs and both BEFORE it's determined that we do in fact have a physical illness, one subset of the giant pool that is ME (CFS). Judith Wisdom On Fri, 07 Jan 2000 14:48:21 -0500 Schweitzer <schweit2@...> writes: > Studies by Deluca and others have shown that at most, 50 percent of > PWC's suffer from secondary depression. > > Speaking as someone who has run and participated in discussion groups > for five years, I'll have to say that I don't know very many PWC's > who > do well on Prozac. There is a larger group of us who are helped by > Zoloft (which I'm coming off of now!) -- it seems to be a milder > SSRI. > But Prozac seems to stimulate patients too much. > > I believe there was a recent study in England (of all places) that > concluded Prozac is NOT a good choice for M.E. > > However -- for over two decades, the " expert " at the NIH for CFS > studies > was Straus ... whose principal coauthor, Mark Demitrack, is > an > executive with Eli Lilly ... which makes Prozac. If you go to the > NIH > website, you will find Prozac listed as the only drug that is known > to > help CFS symptoms!!!!! > > I mean, it's not even subtle. > > I find it amusing that Straus is a virologist playing at being a > psychologist (with his current emphasis on " stress " ) and that doesn't > seem to bother anybody except us patients. Good news for us, I > guess, > that he's been lateral arabesqued over to Alternative Medicine (how > is > he going to reconcile pushing Prozac with that??) -- bad news for > people > genuinely interested in Alternative Medicine. > > Note: with Straus shifted to a different agency, funding for CFS at > NIAID will plummet. At least, the APPEARANCE of funding for CFS will > plummet ... we ought to do something with that politically. > > Schweitzer > mailto:Schweit2@... > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 have you ever thought aout Neurontin? Beverly wrote: > >Steve wrote: > > >are you concidering any of the nest generation of anti-deprssants? > > > > I'm definitely interested in exploring alternatives. Don't know much about > them. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 The best thing I have found so far is Neurontin and it is used for a host of neurological conditions. Remember depression is as much a neurological illness as it is an emotional illness. I do not see any reason to be defensive regarding suggestions that PWCs try SSRIs (prozac and it's little cousins). I would also like to hear about folk who are trying the new generation of antidepressants. The problem is not the CFS is associated with depression. Rather the problem lies in the misunderstanding of depression as an emotional condition rather that a neurological condition (that of course effects emotions) Indeed CFS my be all in our heads. But what is in our heads in a thing called a brain. The brain can have a strong impact on every system -- and in turn it can be influenced by these systems. The person who can figure these issues out will win the Nobel prize. Meanwhile I think it is quite understandable that many Drs. start with a recommendation that person with the presentation of persistent fatigue start treatment with an SSRIs. Remember docs see a lot of people who respond positively to such treatment -- people that would never end up on this list. There was a PWC on the " listening to CFIDS " board who responded so well to paxil that he thought is was cured --and he had been a PWC for about six years. Who know how long his recovery will last but, hell, God bless him for what ever moments of freedom he achieves. The problem is when doctors consider SSRIs the complete treatment for CFS. If one is tied to such a doctor run, don't walk, to a doc that has experience with CFS or if that is not possible find a doc that will learn and listen. If you are in a system that does not allow you to change doc and your doc thinks your condition is psychiatric insist on be referred to the shrink and being treated by the shrink as long as you have symptoms. Over time the shrink will be able to tell that what you have is not classical depression (I am sure that some on this list have had shrinks who are the exception to this rule). When I first got CFS I thought it might be depression. It was my shrink who said " I have seen depression and every variant of it and what you have is not depression " . Thanks for listening to today's sermon. LOL Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 >From: " Dr. Steve " <moores@...> > >have you ever thought aout Neurontin? No, I had never heard of Neurontin until this past month, but I think my phd in neurophysiology friend had mentioned gabapentin to me. I used to think he was crazy with all his talk about supplements, now I know he was way ahead of the rest of us. I havent had any medical insurance since a few months before my relapse 3 years ago, so my prescription meds have been limited to treating the obvious symptoms - allergies, menopause, depression & thyroid. Just found a reasonably cfids literate D.O. this past spring. I had no idea there was so much research and experimentation going on for cfids treatment until I saw the DFW tape of Dr Cheney this summer and joined this list a few months ago. I am much more hopeful now than I've been in 10 years. I just found out that my insurance wont start this month, Feb 1 at the earliest. I'm saving up lots of questions to ask the D.O. when I get to go back. I was very happy that my husbands company found a plan that covers both the D.O. and the G.P. that I've been going to for 10 years. In a way, its a good thing that I didnt have insurance because it forced me to explore alternative stuff like chinese medicine and acupuncture and to read a lot to understand what was going on. If I'd had insurance I would have dragged myself to more MD's who would have told me IAIYH. At one point, I did go to a RHEUM to make sure I didnt have lupus or something auto-immune. I have some symptoms consistent with sjogrens syndrome., but the ANA was negative. I got myself tested for celiac disease/gluten intolerance. I've done a lot of stuff with my allergies. After I read Osler's Web, the last thing I wanted was to have this DD, so I tried real hard to find something else it could be. I still am not officially diagnosed because I saw no point in getting a diagnosis before I have insurance. Its going to interesting to see what happens next. I'm a little afraid of posting, I've heard horror stories of insurance companies using stuff from lists against people. Beverly > > >> >Steve wrote: >> >are you concidering any of the nest generation of anti-deprssants? >> > >> >Beverly wrote: >> I'm definitely interested in exploring alternatives. Don't know much about >> them. >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Steve, I think this is well said and I agree with everything except the part about seeing a shrink. A good shrink will see that what you have is more than depression but there are a lot of bad ones and a lot of mediocre ones who just dispense scripts and don't pay attention to the whole person. I dropped my shrink as soon as I found my cfids literate D.O. I think the key is to find someone willing to look at the whole person whatever their specialty. Beverly >From: " Dr. Steve " <moores@...> > >The best thing I have found so far is Neurontin and it is used for a host of neurological conditions. Remember depression is as much a neurological illness as it is an emotional illness. I do not >see any reason to be defensive regarding suggestions that PWCs try SSRIs (prozac and it's little cousins). I would also like to hear about folk who are trying the new generation of antidepressants. >The problem is not the CFS is associated with depression. Rather the problem lies in the misunderstanding of depression as an emotional condition rather that a neurological condition (that of >course effects emotions) > >Indeed CFS my be all in our heads. But what is in our heads in a thing called a brain. The brain can have a strong impact on every system -- and in turn it can be influenced by these systems. The >person who can figure these issues out will win the Nobel prize. > >Meanwhile I think it is quite understandable that many Drs. start with a recommendation that person with the presentation of persistent fatigue start treatment with an SSRIs. Remember docs see a >lot of people who respond positively to such treatment -- people that would never end up on this list. >There was a PWC on the " listening to CFIDS " board who responded so well to paxil that he thought is was cured --and he had been a PWC for about six years. Who know how long his recovery will last >but, hell, God bless him for what ever moments of freedom he achieves. > >The problem is when doctors consider SSRIs the complete treatment for CFS. If one is tied to such a doctor run, don't walk, to a doc that has experience with CFS or if that is not possible find a >doc that will learn and listen. If you are in a system that does not allow you to change doc and your doc thinks your condition is psychiatric insist on be referred to the shrink and being treated >by the shrink as long as you have symptoms. Over time the shrink will be able to tell that what you have is not classical depression (I am sure that some on this list have had shrinks who are the >exception to this rule). When I first got CFS I thought it might be depression. It was my shrink who said " I have seen depression and every variant of it and what you have is not depression " . > >Thanks for listening to today's sermon. > >LOL > >Steve > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Ah, Judith! I wish I had the references you want -- I SHOULD. But once again I'm working from memory. I think the 50 percent depression figure came from DeLuca; I've seen it used a lot. Same with the British reference -- I remember reading it, but can't remember where (sigh). Increasingly, things I did when I was sick are like a black hole and I'm lucky to remember any of it at all. The reference for the NIH is easy -- it's that NIAID fact sheet on CFS!! They send it out in hard copy to people who write asking about CFS. Here it is, and a disgusting thing to read, too: http://www.niaid.nih.gov/factsheets/cfs.htm Example of how bad it is: " How Many People Have It? The lack of a clinical or laboratory marker for CFS has muddled efforts to determine how many people the illness affects. NIAID and the Centers for Disease Control and Prevention (CDC) fund prevalence studies. Based on the first three years of an ongoing surveillance study in four U.S. cities, the CDC estimates the minimum prevalence rate of CFS in the United States is 4 to 10 cases per 100,000 adults 18 years of age or older (although children can have CFS, too.) This estimate, however, relies on cases referred to CDC study sites by primary physicians, a method that can result in either an underestimate or overestimate of actual cases. " How out of date is THAT?? (The current CDC estimate is 200 per 100,000 -- a little note in the search engine for NIAID tells you to go to the CDC for the most recent prevalence rates, but you can search this website high and low and you won't find that note added here.) It does turn out that I too quickly interpreted " prozac " -- but here is the full passage of what NIAID's fact sheet on CFS says is known about how to help patients with CFS -- you'll see that all they recommend is psycho-pharmaceuticals (and over-the-counter painkillers): " How to Manage and Cope With the Disease No specific treatment has proved effective for CFS. Scientists hope that research will help them identify markers for the illness. These markers would enable them to target treatments to specific abnormalities and to objectively follow the course of the illness. How well different therapies work can then be gauged by measuring changes in those markers in treated patients. Anecdotally, physicians have reported successes in small numbers of patients with various treatments including antivirals, antidepressants, and immunomodulators (drugs that boost the immune system). Few drugs have undergone rigorous clinical testing, however. NIAID researchers tested the antiviral drug acyclovir in a double-blind, placebo-controlled trial and found that as many CFS patients reported feeling better when taking a placebo as when taking acyclovir. This outcome lessens claims of a therapeutic role for acyclovir in CFS. Carefully controlled studies also have revealed conflicting data regarding the value of high-dose intravenous immunoglobulin. Because well-designed clinical trials have found that patients with fibromyalgia (an illness similar to CFS) benefit from low-dose tricyclic antidepressants, doctors often prescribe these drugs for people with CFS with generally positive results. Some researchers believe that these drugs improve the quality of sleep. Patients also have benefitted from other kinds of antidepressants, including the newer serotonin reup-take inhibitors [sSRI's]. Therapeutic doses of antidepressants often increase fatigue in CFS, so doctors may have to escalate the dosage very slowly, or prescribe the so-called more active antidepressants. In addition, some people with CFS benefit from the benzodiazepines, a class of drugs used to treat acute anxiety and sleep problems. Patients often try more than one drug before finding one that works and can be tolerated. Even though no specific CFS treatments exist, symptomatic treatment still can be quite helpful. Nonsteroidal anti-inflammatory drugs may benefit the body aches or fever associated with the illness, and nonsedating antihistamines may help relieve any prominent allergic symptoms. Learning how to manage fatigue enables people with CFS to improve their level of functioning and quality of life despite their symptoms. A rehabilitation medicine specialist can evaluate individuals and teach them how to plan activities to take advantage of times when they usually feel better. The lack of any proven effective treatment can be frustrating to both patients and their physicians. Experts recommend that people with CFS try to maintain good health by eating a balanced diet and getting adequate rest. Physical conditioning should be preserved by exercising regularly but without causing more fatigue. It is important that people with CFS learn to pace themselves--physically, emotionally, and intellectually--since too much stress can aggravate symptoms. The course of CFS varies from patient to patient. For most people, CFS symptoms plateau early in the course of the illness and thereafter wax and wane. Some people get better but not completely. Others spontaneously recover. Emotional support and counseling can help patients and their loved ones cope with the uncertain prognosis and ups and downs of the illness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Sheena hon, There are so many people here on Zoloft that posting it on the list will be fine. It cant take up any more space then picture files etc. Hope your day *hugs* *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynEmail: aisha@... ICQ: #55461955 MSN Instant Messenger: aisha_elderwyn@...AOL Instant Messenger: Angelicisha Instant Messenger: AngelicishaIRC: DALnet # AngelicishaWebsite: http://www.elderwyn.com/aishaBeing Sick Support Group: prozac i have a long article on prozac, zoloft but i will only send it to thosewho request it as it is fairly long..okSheenaThe Being Sick CommunityVisual problems with colors?Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts. Members Lounge:-Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email, and a whole bunch of free things.http://www.elderwyn.com/members Message Archives and Digest Attachment Pictures:-messages/Chat:- Scheduled Daily Chats at # on IRC DALnet./chat.htmSharing our resources:-Add a website URL you have found useful. Personal Complaints or problems:-Please contact a moderator should you require assistance with anything technical or if you are upset by another. The email address for the moderators is <-owneregroups> Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit mygroupsTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~"Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 grrrrrrrr Hope your day is beautiful ... *growls at the stupid email* Much love Aisha (growling at the email that sends itself...) Quote Link to comment Share on other sites More sharing options...
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