Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 , I am so sorry! How awful for you. No advice here and no experience with what you describe. So sorry. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 , Sorry about your Dad. I haven't had any of these type of problems with my mom although sometimes it iw hard for her to drink or take a pill. Wish I could help. Is it that he doesn't want to swallow or that he cannot? Could it be that for his own reasons he has decided not to eat anymore? I will keep you both in my prayers.....Shirley PS Are you by any chance related to a Tom Rasmussen who grew up in SSF,CA? > >Reply-To: LBDcaregivers >To: <LBDcaregivers > >Subject: Frustrated >Date: Sat, 24 Aug 2002 19:47:52 -0700 > >Hi, > >I need to vent I guess. My dad has had LBD for the last 8 years and was >diagnosed 2 1/2 years ago with the correct diag. he started a year ago >going >in to his little comas for a day or so and then waking up happy and talking >for a few hours then back to the mubbling. > >He has not spoken for the last 3 years he just makes noises and once in >while he will sound out a word. He stopped feeding his self a few months >ago >as well. I got used to his little comas he would go in and out of the staff >new what to do. He could swallow and would take liquids and health shakes. >Today he went into another one last night some time but this time he spiked >a low fever and he will not swallow at all. His lungs are clear but he is >still 100% unresposnsive. Has anyone gone threw this? He still jerks alot >when he is in this state as well. > >I guess what is the hardest is he can't tell me what hurts. > >Any help would be great. > > >signal@... > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , My dad is in the same place as yours. We have not had the coma like stage for some time now. Just good days and bad days. Its been 8 years fighting this, he cannot walk or talk. We have gone to the N Home for every meal for over 2 years now because he cannot feed himself. We know when he is in a down position the staff would not take the time to feed him. As of yet we have not had the swallowing problems. Last week his body was so uncontrollable that by evening his head was down between his legs, he was awake and new what was going on around him. The strange thing about this disease is now for the past week dad has been really (with-it). His eyes are at times a glaze but he give you eye contact and will make some type of conversation. He has been setting straight up in his wheel chair and at times has crossed his legs. Hang in there ! We have gone through a lot of tough times. He has been on antibiotics off and on I don't know how many times in the last 6 months. He is a tough little man but keeps fighting this. Keep us posted. Debbie Curtis, Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 I am so sorry for what you are going through. The only experience I have had with my dad is he goes through sleep modes. Recently he slept most of his days away, and no one could wake him up. Sometimes he would open his eyes, laying in the fetal position, and fall back to sleep. What are his vitals like...blood pressure, pulse etc? Sure wish I had some helpful advice. Please keep us posted. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Debbie It is wonderful to see your name in here. Glad to see your dad is doing fine. Take Care~ Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , I am so sorry to hear about your Dad. It certainly can't be easy to see this. Has your father ever had a stroke? Are his vitals indicating anything at all? The fever is his body fighting something. Have they run a white count yet to see if anything is going on bacterially? I would start having some tests ordered like the chem 7 and a UA. Maybe they can start finding some answers there. Keep us posted. I will keep you and your family in my prayers. Take care, Frustrated Hi, I need to vent I guess. My dad has had LBD for the last 8 years and was diagnosed 2 1/2 years ago with the correct diag. he started a year ago going in to his little comas for a day or so and then waking up happy and talking for a few hours then back to the mubbling. He has not spoken for the last 3 years he just makes noises and once in while he will sound out a word. He stopped feeding his self a few months ago as well. I got used to his little comas he would go in and out of the staff new what to do. He could swallow and would take liquids and health shakes. Today he went into another one last night some time but this time he spiked a low fever and he will not swallow at all. His lungs are clear but he is still 100% unresposnsive. Has anyone gone threw this? He still jerks alot when he is in this state as well. I guess what is the hardest is he can't tell me what hurts. Any help would be great. signal@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 My Mom goes through periods where she sleeps a lot. I haven't really had what you are describing. If you Dad has a low grade fever he probably has some kind of infection. Maybe they should check him for a urinary infection. A few years back, when this disease had ravaged Mom, she became confused and disoriented. She was hospitalized. She didn't have a fever, but her white count was up. Two days later the pneumonia showed up. Hope this helps some. Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , I am a speech-therapist and I mainly work with swallowing disorders with the geriatric patients. In these states, your dad is at a very high risk to aspirate(fluids/foods going into the lungs). Believe it or not, there are times an x-ray can miss the trace aspiration. Does your dad have advances directives regarding feeding tube or TPN (IV's)?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Mariea, sorry, I didn't forget about you. Work has been crazy--will forward you vendor info soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 Kirk, all the symptoms you have now are indicative of gulf war syndrome, including the stills symptoms, but especially the neuro symptoms, and probably he's looked back at some of your old records and there are things there that the military maybe didnt tell you about. I'd done a ton of research on that subject. Were you in Balad? Kirk, when we bombed all those storage weapon facilities in Jan of 91 we released massive amounts of serin and other biological agents in the air, sometimes it takes years before the damage done to the dna shows up. Please dont blow off this doc for looking into this, he may very well be the one doc who may save your life. Jen ' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 I was never overseas Jen. I initially got sick at Ft. Benning, Ga in June of 1990 with a 105 fever, severe chills, sore throat etc..., this was two or three days after I got all of our immunizations. Kirk Re: Frustrated Kirk, all the symptoms you have now are indicative of gulf war syndrome, including the stills symptoms, but especially the neuro symptoms, and probably he's looked back at some of your old records and there are things there that the military maybe didnt tell you about. I'd done a ton of research on that subject. Were you in Balad? Kirk, when we bombed all those storage weapon facilities in Jan of 91 we released massive amounts of serin and other biological agents in the air, sometimes it takes years before the damage done to the dna shows up. Please dont blow off this doc for looking into this, he may very well be the one doc who may save your life. Jen ' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Kirk, I am sorry that on top of having a terrible headache, that you are dealing w/ a doc who doesn't understand. How is you head? I haven't gotten a chance to read all the emails, I am doing badly myself. I hope you are going to get to the bottom of this quickly! I have you in my prayers! May you be very comfortable someday soon! love sharon xxoo >   I finally got to see the Neurologist I have been waiting to see in > Hershey and I think I may have wasted more of my time. >   I arrived about a full hour early as I was unable to drive down > last night due to the severity of my headache. I had a friend offer to > drive me and I accepted his offer. Upon arrival, I was given a few > forms to fill out. I answered maybe 1/5th of the questions when I was > called back to see the Dr. >   I can only fathom that this Dr. never read any of my history prior > to my arrival as he knew very little about my situation other than the > fact that I was seen by some of his colleagues in December. I even > went out of my way last week to leave off all of the CD's from all of > my MRI, MRA & CT scans that were performed locally last year so that > he could have 6 in a row to compare with each other as was suggested > by my PCP. He never even looked at them. He asked me how long I > suffered from " Gulf War Syndrome " (I never knew I did) and if I have a > lot of bad dreams (I wanted to get up and smash his head off of the > ******* wall right there, was he even looking at the right chart???) > and he failed to answer any of my questions. >   I was in his office for maybe 1/2 hour. I went down there > optimistic, and left quite pissed. He has me starting another drug > that is supposed to help with the headaches (I have heard this about > 10 times so far already) and I am to call him in a week if it doesn't. >   He seemed surprised when I asked him what the story was on MS. He > says I don't have it. That is the answer I want to hear, but I don't > think this guy looked. When I got home I called my PCP to tell him > what happened (He is as thrilled as I am) and asked him what exactly > was the concern regarding MS. He says it was listed on the discharge > summary from Hershey and a tiny spot on the right frontal lobe on the > MRI showed up. That may be insignificant, but it was noted. >   I also asked the Neuro about the vision problems, the equilibrium > problems, etc.... no answers. >   I wrote him a very " direct " email (I love it when they give me an > email address!) and hopefully will see what this dude is made up of > shortly. I am calling him on his half assed attempt at a treatment. If > anyone wants to see the email I wrote,I am attaching a copy minus > names. >   I want to know if there are any damn neurologists worth dealing > with. I am not giving up on this one yet, but if he doesn't give me > answers I want to hear, he is done. I don't deal with idiots. >   I found the best question he asked me all day was why I used a > cane. I did seriously contemplate showing him just how quick my hands > are with an object such as a cane in them, but thought better of it. > The man was at least friendly, just totally unprepared. >   Later, Kirk....still with a headache and ready to kill! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 My head is still rocking pretty bad, but it is down a notch or two since yesterday afternoon. I have had it bad since last Sunday, and essentially most of this year as I have only had two headache free days to date in 2005. Now my RD is going to contact this Neuro, as the mention of MS in December has all of the treatments I was on " on hold " and my RD was waiting until I saw this Neuro before beginning any new treatments or resuming what I was on. I was on Enbrel & MTX before, and now it looks as if I will be on Gold shots as they may be the only " safe " alternative until this other mess is straightened out. Being that the Gold will most likely be started before that mess is straightened out, unless I have a reaction to it or it doesn't work I will probably be on it for a long while. Thanks a lot, Mr. " I am too busy to waste my time on you, peon " Neurologist!! I hope my RD lights a fire under this guys' ass. I obviously didn't or he didn't check his email as I have yet to receive a reply. I will give him a week, and then I will contact who ever is in charge of that department down there. If I get no satisfaction from that route, I will cancel my appointment with the ****** and get in touch with the Jefferson Headache Clinic and wait a few months longer for an appointment there. Shit, I've only been waiting over a year for an answer for the headaches, why not wait longer?? I have also done some research into the Mayo Clinic, s Hopkins, etc... I won't give up until someone comes up with an answer. One thing I am finding ironic. Neurologists are supposed to be these incredibly intelligent people. Why is it every one I have dealt with is either clue-less or gutless? Not to mention a bit on the arrogant side, save for one guy I had who was very friendly but clue less. Later, Kirk. Re: Frustrated Kirk, I am sorry that on top of having a terrible headache, that you are dealing w/ a doc who doesn't understand. How is you head? I haven't gotten a chance to read all the emails, I am doing badly myself. I hope you are going to get to the bottom of this quickly! I have you in my prayers! May you be very comfortable someday soon! love sharon xxoo > I finally got to see the Neurologist I have been waiting to see in > Hershey and I think I may have wasted more of my time. > I arrived about a full hour early as I was unable to drive down > last night due to the severity of my headache. I had a friend offer to > drive me and I accepted his offer. Upon arrival, I was given a few > forms to fill out. I answered maybe 1/5th of the questions when I was > called back to see the Dr. > I can only fathom that this Dr. never read any of my history prior > to my arrival as he knew very little about my situation other than the > fact that I was seen by some of his colleagues in December. I even > went out of my way last week to leave off all of the CD's from all of > my MRI, MRA & CT scans that were performed locally last year so that > he could have 6 in a row to compare with each other as was suggested > by my PCP. He never even looked at them. He asked me how long I > suffered from " Gulf War Syndrome " (I never knew I did) and if I have a > lot of bad dreams (I wanted to get up and smash his head off of the > ******* wall right there, was he even looking at the right chart???) > and he failed to answer any of my questions. > I was in his office for maybe 1/2 hour. I went down there > optimistic, and left quite pissed. He has me starting another drug > that is supposed to help with the headaches (I have heard this about > 10 times so far already) and I am to call him in a week if it doesn't. > He seemed surprised when I asked him what the story was on MS. He > says I don't have it. That is the answer I want to hear, but I don't > think this guy looked. When I got home I called my PCP to tell him > what happened (He is as thrilled as I am) and asked him what exactly > was the concern regarding MS. He says it was listed on the discharge > summary from Hershey and a tiny spot on the right frontal lobe on the > MRI showed up. That may be insignificant, but it was noted. > I also asked the Neuro about the vision problems, the equilibrium > problems, etc.... no answers. > I wrote him a very " direct " email (I love it when they give me an > email address!) and hopefully will see what this dude is made up of > shortly. I am calling him on his half assed attempt at a treatment. If > anyone wants to see the email I wrote,I am attaching a copy minus > names. > I want to know if there are any damn neurologists worth dealing > with. I am not giving up on this one yet, but if he doesn't give me > answers I want to hear, he is done. I don't deal with idiots. > I found the best question he asked me all day was why I used a > cane. I did seriously contemplate showing him just how quick my hands > are with an object such as a cane in them, but thought better of it. > The man was at least friendly, just totally unprepared. > Later, Kirk....still with a headache and ready to kill! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Kirk, Do consider Mayo. I really think I would have died last year (one year ago last week since I went) if I had not gone there. Up until then, I felt that there was no hope for me. I hurt so bad every day that it basically hurt just to breathe. And, I wanted to go ahead and die. I know I've mentioned Mayo to you before. I can't say enough good things about it and the doctors. Everyone from staff to doctors are completely patient oriented. And they all communicate almost instantly with each other and cooperate with each other. The doctors are super smart, not arrogant and truly care about you. I never once wanted to smash anyone's head in, unlike quite a few of the doctors I had seen in Atlanta. My doctor (the one smart one without the ego) referred me, and I got an appointment quickly. No long waiting around. All my medical records were sent to them in advance, and the doctors had obviously read the info. before I got there. No ******** at Mayo. Just think about it some more. Love and thinking of you, Welynda I have also done some research into the Mayo Clinic, s Hopkins, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 Hi, how many shot's have you done so far? With me I just worse and the shot's went on but I wa on 800mg a day with the shot's 3 time's a week and I know what you are going thru,you can make you sound very strong! Bless you and hang on HUG'S l" B." wrote: I'm frustrated. I have moved my shots to Wednesday night in hopes of any down time I might have would come on Friday or Saturday (my lighter days). And now, here again, it's Sunday night and I feel the worst I've felt all week. Go figure. I guess it shouldn't be surprising to me that I would be one of the ones that would be "different." Oh, well, just wanted to sound off a bit...thanks for listening. Have a blessed week, Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. LINDA Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 , I take my shots on Tuesday nights and my bad days started started out being four days later. (Saturday) I did not change my shot day. Later the bad days changed to three days after the shot. Now a days, it's one or two days after the shot. It's the unpredictable dragon, I think. He sees that I feel really good some days and that night he attacks me with no warning. Go figure. God bless you, Hugs, VickieG Frustrated I'm frustrated. I have moved my shots to Wednesday night in hopes of any down time I might have would come on Friday or Saturday (my lighter days). And now, here again, it's Sunday night and I feel the worst I've felt all week. Go figure. I guess it shouldn't be surprising to me that I would be one of the ones that would be "different." Oh, well, just wanted to sound off a bit...thanks for listening. Have a blessed week, Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 I know you, so I know you’re drinking your water. I wonder if it has to do with less activity on the weekend. Are you laying around or up & moving around the house? Grasping at straws here for you….. My current aches & pains are worse if I lay on the couch all day Saturday than on Sunday when I go to church & have a little activity. Frustrated I'm frustrated. I have moved my shots to Wednesday night in hopes of any down time I might have would come on Friday or Saturday (my lighter days). And now, here again, it's Sunday night and I feel the worst I've felt all week. Go figure. I guess it shouldn't be surprising to me that I would be one of the ones that would be " different. " Oh, well, just wanted to sound off a bit...thanks for listening. Have a blessed week, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 I have heard of a couple of people where it didn't seem to matter when they had the shot,they still got sick at the wrong time.Are you working and what kind of job is it.The job might be to fast paced and is adding to your difficulties with treatment.With the old treatment you only had one day a wk that you weren't sick because of so many shots a wk,but this new treatment is supposed to be so much better but it seems to average about 40% still have a hard time cause the new treatment is higher doses.Are you drinking enough water and juices to flush your system out,which reduces the sides.Just keep a bottle of water of gater aid by you at work and sip on it. Gail Frustrated I'm frustrated. I have moved my shots to Wednesday night in hopes of any down time I might have would come on Friday or Saturday (my lighter days). And now, here again, it's Sunday night and I feel the worst I've felt all week. Go figure. I guess it shouldn't be surprising to me that I would be one of the ones that would be "different." Oh, well, just wanted to sound off a bit...thanks for listening. Have a blessed week, Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Hi Everyone, When I was on tx (2001) I was told to drink half my body weight in ounce's I weigh 100 right now so I still drink 50 ou a day, the tx dry's you up realy bad, I hope all you on tx are doing good, I know how hard it can be on some of us HUG'S Lgail wrote: I have heard of a couple of people where it didn't seem to matter when they had the shot,they still got sick at the wrong time.Are you working and what kind of job is it.The job might be to fast paced and is adding to your difficulties with treatment.With the old treatment you only had one day a wk that you weren't sick because of so many shots a wk,but this new treatment is supposed to be so much better but it seems to average about 40% still have a hard time cause the new treatment is higher doses.Are you drinking enough water and juices to flush your system out,which reduces the sides.Just keep a bottle of water of gater aid by you at work and sip on it. Gail Frustrated I'm frustrated. I have moved my shots to Wednesday night in hopes of any down time I might have would come on Friday or Saturday (my lighter days). And now, here again, it's Sunday night and I feel the worst I've felt all week. Go figure. I guess it shouldn't be surprising to me that I would be one of the ones that would be "different." Oh, well, just wanted to sound off a bit...thanks for listening. Have a blessed week, Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. LINDA Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 I hear your frustration. I have two kids with OCD--one fifteen and the other eighteen. It has been my long experience that you can lead a horse to contamination but you can't make her get over it. Neither of my girls tackle things in the order I'd like them to. I have OCD myself and personally, there are some issues I don't want to work on for my own recovery. They are either too high on my list of " bad " or they aren't important to me. I absolutely hate drains of any kind. I am bothered in public bathrooms if I feel the floor sloping toward a drain and will stand in all kinds of weird positions to avoid both drains and slopes. Working on this is not important to me. Each person with OCD has a " list " of things that bother them. If it isn't the right time to work on something, it isn't going to happen. It could be that the seating in the car is too high on your son's list right now. Also, being a teenager with a disorder like OCD, he probably feels that he needs to be in control. Unfortunately, this is his battle and our job are parents is to encourage them and support them in what they do. It drives me nuts sometimes because both of my kids have things they obviously need to work on and they don't. I also believe that sometimes they don't want to be monitored by us. They want to be independent and sometimes they don't want to deal with their issues. It is very hard to be a teen with a mental disorder and maybe your son is focusing on coming to terms with that. I know my girls go through phases where they will realize something new about their own lives. My oldest is in child development and when she found out how dangerous her medications are to a baby, she had to digest that for a long time before moving on. She knows now that her adult life is going to be affected by this also. I am a bit rambling this morning--please don't read this as criticism to you--I guess I'm just trying to say that I think your situation is normal and that you are going to have to let your son do things his way, even if it doesn't make sense from the outside. Hang in there. Kelley in NV **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Thank you for your support and encouragement. I am going to the movies. Helene **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 As one who has a teen I can tell you its hard having a TEEN any teen, let alone a teen with OCD. I'm glad you have posted here, we all know what it's like to be in your shoes, we live it each and every day. Regarding your son, can you talk the therapist and share your concerns about the treatment??? Maybe you'll better understand why you aren't seeing more results. If aren't happy maybe you should find another therapist?? Could the Therpist give you guys homework, stuff in which you both can work on at home. If he works on things more than once a week I think you'll see more results, just like any form of learning, the more you do it and practice the more result you'll have. I have trouble with Anger, if I made my son sit on that seat in van it would only harm our relationship as I'd get pissy and mad trying to make him. I'm sure there are books that might help you??? Lastly, be sure you get some ME time, some time to relax and take care of yourself. Good Luck, keep posting, these members are great!!!!! They'll support you and let you vent!!!! Big Hug Tim Wahl Columbia MO > > At this point I am feeing very frustrated. My son is 16 years old and > has ocd for about 5 years ago. He was taking prozoac and now he is > taking zoloft. We have been seeing someone for about a year who does > exposure and response method. We have also seen others in the past. > This as all of you know has been an ongoing battle. The therapy is very > expensive and so far I don't see any progress. He seem to pick his > exp. on what he wants to do. I really can't measure any of them. He > picks things that he does at school. What can't his therapist more > aggressive and chose ones that I can measure at home. For example, he > won't sit in a certain spot in the car, because one of his friends who > is contaminated sat in that spot. I feel like making him sit in it. > I just want to be able to measure the progress. Helene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 said it really well. It is frustrating, as the parent, wanting to see certain things worked on because they seem to make life harder for everyeone, and you want them gone so things can so smoother for the whole family. Still, something my son's therapist has told me, more than once, is that unless they are willing to work on it, it won't work. If you force them, you may cause the anxiety and angst they feel about it, to worsen. They have to mentally ready to tackle it in order for there to be improvement, therefore it's best if it's their choice. It is a slow process. Painstakingly slow, sometimes. But, if they are making any progress at all, that is good. Even if it is frustrating. lol I've felt the same at times. I imagine most parents of children with OCD have. The whole point of doing CBT/ERP is not only to help them rid themselves of the current rituals they have, but to recognize new things that pop up and learn how to apply the same technique to them, to stop them before they grow. After almost two years of therapy (going only once a month for quite some time now, so it's going slow) our son is still working on things, but still making slow progress (now). And there are some things he is not willing to work on yet, like hoarding. He's considering it, but he's not ready yet. He is also not willing to work on touching raw eggs, or raw meat. He did all the other contamination exposures, but not those. Those two are pretty high on his list, and he can't bring himself to do them yet. Sometimes we just have to continue to allow things, and even enable them, to keep the peace, while patiently waiting to see if they ever get ready. While also accepting, they may not. Hopefully, he will work through all the ones at school and start some at home soon, so you can see progress there too. Hugs, BJ > > At this point I am feeing very frustrated. My son is 16 years old and > has ocd for about 5 years ago. He was taking prozoac and now he is > taking zoloft. We have been seeing someone for about a year who does > exposure and response method. We have also seen others in the past. > This as all of you know has been an ongoing battle. The therapy is very > expensive and so far I don't see any progress. He seem to pick his > exp. on what he wants to do. I really can't measure any of them. He > picks things that he does at school. What can't his therapist more > aggressive and chose ones that I can measure at home. For example, he > won't sit in a certain spot in the car, because one of his friends who > is contaminated sat in that spot. I feel like making him sit in it. > I just want to be able to measure the progress. Helene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Just wanted to claify, by enabling, I mean sometimes just let it be, or sometimes even help them if they get too over agitated and anxious. BJ > > > > At this point I am feeing very frustrated. My son is 16 years old and > > has ocd for about 5 years ago. He was taking prozoac and now he is > > taking zoloft. We have been seeing someone for about a year who does > > exposure and response method. We have also seen others in the past. > > This as all of you know has been an ongoing battle. The therapy is very > > expensive and so far I don't see any progress. He seem to pick his > > exp. on what he wants to do. I really can't measure any of them. He > > picks things that he does at school. What can't his therapist more > > aggressive and chose ones that I can measure at home. For example, he > > won't sit in a certain spot in the car, because one of his friends who > > is contaminated sat in that spot. I feel like making him sit in it. > > I just want to be able to measure the progress. Helene > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Hi Helene, Everyone else has spoken to the teen part of the equation, which I also feel is often the biggest piece with this age group, at least that has been our experience of it. I understand your desire to want to know what he is actually accomplishing since you are paying the bill, and you certainly do have the right to question what is being done and ensure that ERP principles are being followed, and clarify progress with the thearpist. Also with the medication piece, to be sure he is on a high enough dose, in case that is part of the challenge getting in the way of doing ERP. However, as others have said, it really needs to be their show. They have to take it on and do it, it's theirs for life to manage. As a Mum of a 17yr old I am learning to not engage at all. The more I back off the more he takes on........eventually, or not. But the more I get tangled in it the more he stays engaged in fighting with me rather than the OCD, or just life responsibility stuff, in our case currently school (!). I am having " discussions " lately with our son about " issues " , and am learning how to stay neutral as I deliver my point of view, ending with " but it's your life " . I ask him how he is going to make something work, what he would like me to do to help, if anything, make sure he knows the ground rules as necessary, and then leave it with him. AND, don't get mad if something is not accomplished, just let him deal with the consequences. Ok, admittedly I get mad sometimes, but try not to let him know it. We had the car seat thing too. Best to go along we found. The more you get angry over it the more they lock in sometimes. Really do have to let them choose what they will work on, and if he is working on it at all, then that is in itself positive. It may be that he does not want to work on stuff at home because he feels you will be tracking him and he doesn't want that. Ours can feel very criticised by me even if I just ask a question, reads things into my words etc, part of the independence thing too, they don't want their mother in their business.... It is hard because you want some evidence that they are working on it and making progress, but basically if he is going to appointments and you have confidence that the doctor knows how to treat OCD, then it is a matter of leaving them to it, and then time. If on the other hand you feel nothing at all is being accomplished, then usu a therapist will see this too and suggest stopping, so you might check in on this. Sometimes they just aren't on board and you have to wait it out, generally for the maturity and motivation pieces to kick in, and then start up again. If your son does undertand the principles of OCD then he will be able to continue at his own pace on his own when he is ready to do so. Ours finally took it on when he stopped seeing doctors, think he wanted to do it his own way and not to be told, and he would actually lock in with the doctors and have obsessions around them. Just no end to the twists and turns of this disorder sometimes. If you can let go of the end point, and wanting to see certain OCD things change, and instead look for any progress, you might be able to see some of the things that have improved. It's going to be what it will be regardless, so letting go of wanting it to be otherwise will help you let go of the frustration. My experience with it anyway. No question teens can be exhausting, difficult, rude, irresponsible, lazy, lacking in judgement and the ability to see the consequences of their actions, and then there's the OCD.... Frustrating doesn't even touch the depth of it!!! I truly empathize with you on this, we were only two years being in a " stuck " place, I cannot imagine five. Hang in there, and I will add breath, as I find there is a lot of sucking in of breath not to mention tongue biting as a parent of a teen. Hugs! Barb > > At this point I am feeing very frustrated. My son is 16 years old and > has ocd for about 5 years ago. He was taking prozoac and now he is > taking zoloft. We have been seeing someone for about a year who does > exposure and response method. We have also seen others in the past. > This as all of you know has been an ongoing battle. The therapy is very > expensive and so far I don't see any progress. He seem to pick his > exp. on what he wants to do. I really can't measure any of them. He > picks things that he does at school. What can't his therapist more > aggressive and chose ones that I can measure at home. For example, he > won't sit in a certain spot in the car, because one of his friends who > is contaminated sat in that spot. I feel like making him sit in it. > I just want to be able to measure the progress. Helene > Quote Link to comment Share on other sites More sharing options...
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