Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Welcome! I am so sorry that you have lived through so much pain! It sounds like your father could have BPD. What was your mother like? Your homelife had to have been a nightmare even when you were awake. No wonder you have been treated for PTSD and the others. Quite a few people who have lived any time - even marriage with a BP - have PTSD. Have you ever read Toxic Parents? That was a good book for me. I would say that if you've been in therapy, then you've probably already started working on all the fleas (learned behaviors) that your parents gifted you with. this list can offer validation and support and help you learn even more. I'm sure you started dreaming again because you are adding new knowledge and processing it. I hope that settles down for you! Keep posting. Btw, there are plenty of hurting women that married BP men, because that was " normal " for them. Ilene sorefeet22001 wrote: > Hello List Members, > > i am a 41 year old female who recently learned about BP in > relationship to BP sister. the more i learn about BP the more i am > wondering if my father was/is BP too. i always just thought of him as > crazy and perhaps evil. he was diagnosed as manic-depressive in his > late 50's or early 60's (though in all honesty that doesn't seem > quite right to me)... > > i always thought that maybe he was sociopathic, or paranoid > schizophrenic, or manic or something but i could never nail it down > because these don't seem to fit quite right. But the lightbulb turned > on as i read about BP and the idea of adult children of BP parents. > > in my childhood and early adulthood nightmares my father was a > vampire who constantly chased me. then i read the article on > Emotional Vampires that a list member on my other list posted and it > made sense to me that i dreamt that my father was a vampire because > he tried to suck the life/spirit/soul right out of me. > > Recently, i have joined list for siblings of BPs and the weird thing > is, while i am thinking about my sis and trying to sort out how to > deal with her, i started having bad dreams again (i haven't been > plagued with nightmares/bad dreams for about a decade). the weird > thing is that the bad dreams are often about my father (whom i don't > think about as i have no contact with him for about a decade). i had > this strange, vivid dream where i went to see my father and i told > him that i understand he was ill and that i forgave him (for the > sexual abuse) and that i had never intended to sue him or report him > to the cops, etc. In my dream, i felt a sense of love for my father, > and pity, as though he was a bad child who couldn't help himself for > all the horrendous stuff he did (even though he was, in fact, an > adult). > > i have never had a framework for understanding my father's very very > very bad behaviour. also, i thought BPD was something that women get. > men get anti-social personality or sociopathy or something like that. > Forgive the long, rambling post. it is my first post to this list. it > blows my mind to think that maybe my father was/is BPD too. Any > thoughts? > > If he is BPD, is there something specific i should do as a child of a > father with BPD? i have done adult children of alcoholics, survivors > of incest anonymous, and a variety of other therapeutic treatment > over the years but i have never looked at the issue of my father > being BPD and what that might mean. Any information or insight on > this? > > Colleen > > Do you think it is possible that not just my sister but my father > too, has BP traits or BP disorder? I was diagnosed and treated for > PTSD in my late 20's/early 30's. recently, i have been diagnosed and > am doing treatment for generalized social anxiety or social phobia (a > phobic fear of being harshly judged by people. are these issues > associated with having a BPD Father? > > Colleen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 " sorefeet22001 " wrote: > > ... i thought BPD was something that women get. > men get anti-social personality or sociopathy or something like that. > ... it is my first post to this list. it > blows my mind to think that maybe my father was/is BPD too. Any > thoughts? Hi Colleen, Both males and females can have BPD. I have an acquaintance who works as a social worker in law enforcement. His job is to diagnose offenders. He refuses to take the time to learn about BPD and simply labels them all as APD. Sad! > If he is BPD, is there something specific i should do as a child of a > father with BPD? i have done adult children of alcoholics, survivors > of incest anonymous, and a variety of other therapeutic treatment > over the years but i have never looked at the issue of my father > being BPD and what that might mean. Any information or insight on > this? They're the same. A BP is a BP regardless of sex. You've done lots of work in recovery groups. Pull up a chair and share your thoughts here. You'll find a lot of validation and support. No one knows better than a KO what its like to walk in a KO's shoes. > Do you think it is possible that not just my sister but my father > too, has BP traits or BP disorder? Sure. If it walks like a duck and quacks like a duck, it probably IS a duck. One has to remember, however, that there is no " pure " BPD. And NonBP KOs can acquire (ie, learn) BP traits that they eventualy have to un-learn. It takes a lot of hard painful work but it can and does get better. > I was diagnosed and treated for > PTSD in my late 20's/early 30's. recently, i have been diagnosed and > am doing treatment for generalized social anxiety or social phobia (a > phobic fear of being harshly judged by people. are these issues > associated with having a BPD Father? Yes, they're associated with having had a parent with BPD. My PTSD left spontaneously after I'd been on this list for two years. There was no KO ahead of me to lead the way so I had no expectations of that happening. We have four other KOs on this list with BP fathers (ie, fadas) and I've been waiting for any of them to respond to your post. Maybe they haven't seen it yet. People lead busy lives these days. I recommend that you read Ann Lawson's book, Understanding The Borderline Mother (UBM). According to Ms Lawson, the roles (hermit, waif, witch, and queen) apply to both nadas and fadas. The best price I've seen so far, for either the hard-copy or paperback, is at www.buy.com. Or, maybe they have it at your local library. Cheers, - Edith .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Theresa, I would also recommend that you give them a call. His wife's name is Jackie, and they are both really sweet people. They really seem to enjoy talking to people when they call, my husband and I and several of our friends have conversed with the Gordons on many different topics, and they are always very helpful. The only time that they do not appreciate phone calls is from Friday evening through Saturday.Reba Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Thanks, Theresa,interesting - my current cancer problem (on top of local recurrence of ductal carcinoma) is inflammatory breast cancer. it's relatively rare so I find it interesting that you are here having gone through it. The docs are leery of giving me the chemo because of my other health problems, but can't do the surgery unless they can reduce the inflammation. So far no mets, but no totally recent scan, either. Read The Maker's Diet some years back and it helped move me in better directions, but I need to look further, and will look at the video because I may not have conventional options. Thanks so much - it means a lot right now - I am hoping my raw goat milk helps, too. You have my encouragement for sure - some day some of us have to fight this fight in more natural ways and change how cancer is treated (as well as how to prevent it). I like to hope we are pioneers, and will be successful, and then help others.You have just helped me, in terms of support if nothing else.Thanks,God bless back,Another fighter,TheaWelcome to the Raw Dairy group Thea!  I,too, am new here. Just joined a couple week's ago. I am sorry to hear about your having cnacer and understand exactly what you are experiencing as I also have cancer, which is what brought me here. diagnosed in 2005 with a stage 3b inflammatory breast cancer 6 months chemo, surgery, and a total of 50 day's radiation, 16 of which I just finished asit has returned to my liver and spine. My hygenist introduced me to the bok "THE MAKERS DIET" by Jordin Rubin and his book "PATIENT HEAL THYSELF", which is lead me to this sight. It has given me a wole new feeling concerneing my cancer. It brought back to me some control in my battle of this horrible disease. Some people here have given me some really great information. I would encourage you to watch this video if youyou have not already. Jerry Brunetti healed himself of cancer and without any conventional help where chemo and radiation are concerned. http://video.google.com/videoplay?docid=-8841234327210711547 & q=food+jerry+brunetti & total=2 & start=0 & num=10 & so=0 & type=search & plindex=0 I look forward to reading your post's and hope we can share information and encourage each other. God Bless and fight hard,Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi Thea, I am glad I could help even just a bit. Yes, they had to shrink my tumor also. My mamogram in October. 2004 showed nothing, by February 2005 I had a baseball. I had just moved my used book store. 100,000 books in boxes and I find I have cancer. Thank God for friends and sisters. After six months they shrunk it but as I waited to get stronger for the surgery it started to grow again. Finally it was out, along with all the lymph nodes under the left arm. It's vehical to spread. It was just a matter of time. I can't remember..did you say if you were going to make the kefir? I wish I had understood all of this whole food's way of eating two years ago, especially the kefir and Kambucha tea. Keep up your great spirit, and ...you could never write too much here. Information is power. God Bless, Theresa PS. Has anyone heard from lately? We are praying for you !Thea Hardy wrote: Thanks, Theresa, interesting - my current cancer problem (on top of local recurrence of ductal carcinoma) is inflammatory breast cancer. it's relatively rare so I find it interesting that you are here having gone through it. The docs are leery of giving me the chemo because of my other health problems, but can't do the surgery unless they can reduce the inflammation. So far no mets, but no totally recent scan, either. Read The Maker's Diet some years back and it helped move me in better directions, but I need to look further, and will look at the video because I may not have conventional options. Thanks so much - it means a lot right now - I am hoping my raw goat milk helps, too. You have my encouragement for sure - some day some of us have to fight this fight in more natural ways and change how cancer is treated (as well as how to prevent it). I like to hope we are pioneers, and will be successful, and then help others. You have just helped me, in terms of support if nothing else. Thanks, God bless back, Another fighter, Thea Welcome to the Raw Dairy group Thea! I,too, am new here. Just joined a couple week's ago. I am sorry to hear about your having cnacer and understand exactly what you are experiencing as I also have cancer, which is what brought me here. diagnosed in 2005 with a stage 3b inflammatory breast cancer 6 months chemo, surgery, and a total of 50 day's radiation, 16 of which I just finished asit has returned to my liver and spine. My hygenist introduced me to the bok "THE MAKERS DIET" by Jordin Rubin and his book "PATIENT HEAL THYSELF", which is lead me to this sight. It has given me a wole new feeling concerneing my cancer. It brought back to me some control in my battle of this horrible disease. Some people here have given me some really great information. I would encourage you to watch this video if youyou have not already. Jerry Brunetti healed himself of cancer and without any conventional help where chemo and radiation are concerned. http://video.google.com/videoplay?docid=-8841234327210711547 & q=food+jerry+brunetti & total=2 & start=0 & num=10 & so=0 & type=search & plindex=0 I look forward to reading your post's and hope we can share information and encourage each other. God Bless and fight hard, Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi Thea, I am glad I could help even just a bit. Yes, they had to shrink my tumor also. My mamogram in October. 2004 showed nothing, by February 2005 I had a baseball. I had just moved my used book store. 100,000 books in boxes and I find I have cancer. Thank God for friends and sisters. After six months they shrunk it but as I waited to get stronger for the surgery it started to grow again. Finally it was out, along with all the lymph nodes under the left arm. It's vehical to spread. It was just a matter of time. I can't remember..did you say if you were going to make the kefir? I wish I had understood all of this whole food's way of eating two years ago, especially the kefir and Kambucha tea. Keep up your great spirit, and ...you could never write too much here. Information is power. God Bless, Theresa PS. Has anyone heard from lately? We are praying for you !Thea Hardy wrote: Thanks, Theresa, interesting - my current cancer problem (on top of local recurrence of ductal carcinoma) is inflammatory breast cancer. it's relatively rare so I find it interesting that you are here having gone through it. The docs are leery of giving me the chemo because of my other health problems, but can't do the surgery unless they can reduce the inflammation. So far no mets, but no totally recent scan, either. Read The Maker's Diet some years back and it helped move me in better directions, but I need to look further, and will look at the video because I may not have conventional options. Thanks so much - it means a lot right now - I am hoping my raw goat milk helps, too. You have my encouragement for sure - some day some of us have to fight this fight in more natural ways and change how cancer is treated (as well as how to prevent it). I like to hope we are pioneers, and will be successful, and then help others. You have just helped me, in terms of support if nothing else. Thanks, God bless back, Another fighter, Thea Welcome to the Raw Dairy group Thea! I,too, am new here. Just joined a couple week's ago. I am sorry to hear about your having cnacer and understand exactly what you are experiencing as I also have cancer, which is what brought me here. diagnosed in 2005 with a stage 3b inflammatory breast cancer 6 months chemo, surgery, and a total of 50 day's radiation, 16 of which I just finished asit has returned to my liver and spine. My hygenist introduced me to the bok "THE MAKERS DIET" by Jordin Rubin and his book "PATIENT HEAL THYSELF", which is lead me to this sight. It has given me a wole new feeling concerneing my cancer. It brought back to me some control in my battle of this horrible disease. Some people here have given me some really great information. I would encourage you to watch this video if youyou have not already. Jerry Brunetti healed himself of cancer and without any conventional help where chemo and radiation are concerned. http://video.google.com/videoplay?docid=-8841234327210711547 & q=food+jerry+brunetti & total=2 & start=0 & num=10 & so=0 & type=search & plindex=0 I look forward to reading your post's and hope we can share information and encourage each other. God Bless and fight hard, Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Thea, You may want to research the work of Otto Warburg--he won two Nobel prizes (although he could only accept one of them; the second one was during World War II). Also, there is a conference call at 9:00 Eastern tonight at (212)990-8000; the PIN number is 3024#. I am a member of this company (called Advanced Scientific Health)--but I don't want to give you my replicated site; if you think it sounds worthwhile to you, just join under anyone.The basic principle is to raise your body's PH, thereby getting more oxygen to the cancerous cells--the best way to do this is with cesium; also, the first secondary cause of cancers is sugar, so you probably should avoid it. J. Re: Introducing myself Thanks, Theresa, interesting - my current cancer problem (on top of local recurrence of ductal carcinoma) is inflammatory breast cancer. it's relatively rare so I find it interesting that you are here having gone through it. The docs are leery of giving me the chemo because of my other health problems, but can't do the surgery unless they can reduce the inflammation. So far no mets, but no totally recent scan, either. Read The Maker's Diet some years back and it helped move me in better directions, but I need to look further, and will look at the video because I may not have conventional options. Thanks so much - it means a lot right now - I am hoping my raw goat milk helps, too. You have my encouragement for sure - some day some of us have to fight this fight in more natural ways and change how cancer is treated (as well as how to prevent it). I like to hope we are pioneers, and will be successful, and then help others. You have just helped me, in terms of support if nothing else. Thanks, God bless back, Another fighter, Thea Welcome to the Raw Dairy group Thea! I,too, am new here. Just joined a couple week's ago. I am sorry to hear about your having cnacer and understand exactly what you are experiencing as I also have cancer, which is what brought me here. diagnosed in 2005 with a stage 3b inflammatory breast cancer 6 months chemo, surgery, and a total of 50 day's radiation, 16 of which I just finished asit has returned to my liver and spine. My hygenist introduced me to the bok "THE MAKERS DIET" by Jordin Rubin and his book "PATIENT HEAL THYSELF", which is lead me to this sight. It has given me a wole new feeling concerneing my cancer. It brought back to me some control in my battle of this horrible disease. Some people here have given me some really great information. I would encourage you to watch this video if youyou have not already. Jerry Brunetti healed himself of cancer and without any conventional help where chemo and radiation are concerned. http://video.google.com/videoplay?docid=-8841234327210711547 & q=food+jerry+brunetti & total=2 & start=0 & num=10 & so=0 & type=search & plindex=0 I look forward to reading your post's and hope we can share information and encourage each other. God Bless and fight hard, Theresa __________ NOD32 2490 (20070829) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 Hi ! You're right about the positives/blessings with our kids, can sometimes get lost, forgotten, in the midst of all the OCD stuff! Whew, you do have a household full of it! And you're still sane, can tell by how well you write, LOL! > athletics... The only reason I bring this up is to say that while we as OCD parents have SO MUCH to deal with, OCD kids seem to be unusually gifted. I hope I can encourage other OCD parents that there is a good side to all of this. And it actually seems to be getting better. My son, especially, is seeming to be able to work through his problems more. Our prayers have been answered. I have been helped so much by your honest and frank sharing on what you have faced. Just wanted to officially introduce myself because I do have some questions but will save that until later. Take care. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Welcome ! I agree with you! I think my daughter is quite gifted in spite of the OCD. She seems highly intelligent and her teachers have told me such although they struggle with how to deal with her other issues. She is highly artistic. She can draw amazing pictures that adults notice. She is stylish too. I have tried her whole life (she is 12) to instill in her the sense that it is " good " to be different---even way before I knew she had OCD, and I think it helps. Don't get me wrong, she can be socially immature at times, but then she will turn around and say something so wise that you are like, " Wow! Is that a kid in there? " Thank God for our children!!! We are blessed to have them. I wish you much luck and if I can be of support to you, please know that I am here. > > > athletics... The only reason I bring this up is to say that while we as OCD parents have SO MUCH to deal with, OCD kids seem to be unusually gifted. I hope I can encourage other OCD parents that there is a good side to all of this. And it actually seems to be getting better. My son, especially, is seeming to be able to work through his problems more. Our prayers have been answered. I have been helped so much by your honest and frank sharing on what you have faced. Just wanted to officially introduce myself because I do have some questions but will save that until later. Take care. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Well, some " poor " people where I've worked before have had to listen (or pretend to, lol) about all my sons, but they generally never meet them so a lot of them know about and his OCD, etc. He never wanted any peers to know, and for a long time I don't think his brothers " outed " him, but with some close friends of theirs they may have. I know his twin just used to say " that's just ! " or something if someone asked about him. So between work and this group, I got a lot of venting/frustration out. His teachers knew due to his 504 Plan, he was okay with that. My oldest (now 26) still holds against me some things I " outed " about him (typical, no dx) when he was younger (comment to a teacher or something). But seems to have forgiven me since he's been in his 20's. > > Thanks so much for the welcome, melissaandamy. I know what you mean about the wise remarks. OCD kids tend to tell it like it is, for sure. On one hand, they can be so unreasonable, but then they say something so insightful. Usually, with my son, it's a humorous observation. He's so dead-on when imitating people and things. I guess their meticulous analysis is the reason. It would be neat to see some of the artwork your daughter has done. thanks for the compliment. I have been there where all of the group has been. Sometimes, one feels so despairing. We've been dealing with OCD for Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 I understand what you mean about wanting to talk to people about their issues and explain. I feel sometimes like I can't even mention that we have been to the doctor because people start asking why she is going to the doctor. If she had leukemia or some other physical ailment,I would not have a thought in the world about sharing that with other people. But when you start to share that your child has OCD, even if you can handle sharing it, you have to deal with family members who can't stand the idea of you sharing it. I am a pretty open person, and I just feel like if we all talked about it more then people would be more understanding. The only reason I don't talk more openly about it is because her dad gets freaked out himself. He can't stand it that I share personal information like that. I think if her own dad would chill out then I could get her to understand that it is okay to talk about this stuff. > > > > > > > athletics... The only reason I bring this up is to say that while we as OCD parents have SO MUCH to deal with, OCD kids seem to be unusually gifted. I hope I can encourage other OCD parents that there is a good side to all of this. And it actually seems to be getting better. My son, especially, is seeming to be able to work through his problems more. Our prayers have been answered. I have been helped so much by your honest and frank sharing on what you have faced. Just wanted to officially introduce myself because I do have some questions but will save that until later. Take care. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 I think that it is terribly hard to have OCD or have a loved one with OCD not only because OCD is so hard to handle, but because there is a stigma about mental illness in this world. It is just a hard, cold fact that there is a stigma, but it isn't something that can be ignored. My siblings/dad and my very close friends and my kids' school know about my kids' OCD, but other than that, no one does. I have found that, sadly, people are naturally quick to judge and mental illness is off-putting to people. They especially can't understand weird thoughts or actions which aren't rational to them, which is what OCD is, so it is not unusual that they would then think differently about the child in general, rather than just as a regular child with a particular issue. I just got back from a family tour of Israel including 6 families with my dad and kids. We became close with the tour lead and tended to spend our meals with her at our table. One day I was explaining to her that both my kids have anxiety disorders (I didn't even risk saying they had OCD!), and she said, " I'm surprised. You don't seem like you are the kind of parent who would cause your kids to be anxious. I mean I know you have expectations, but you seem relaxed with them. " I was SO annoyed that in this day and age, this highly educated, caring woman would believe that anxiety disorders come from parenting. It reinforced for me that I will not tell people like that about my family's struggles, unless it is necessary. Re: INTRODUCING MYSELF I understand what you mean about wanting to talk to people about their issues and explain. I feel sometimes like I can't even mention that we have been to the doctor because people start asking why she is going to the doctor. If she had leukemia or some other physical ailment,I would not have a thought in the world about sharing that with other people. But when you start to share that your child has OCD, even if you can handle sharing it, you have to deal with family members who can't stand the idea of you sharing it. I am a pretty open person, and I just feel like if we all talked about it more then people would be more understanding. The only reason I don't talk more openly about it is because her dad gets freaked out himself. He can't stand it that I share personal information like that. I think if her own dad would chill out then I could get her to understand that it is okay to talk about this stuff. > > > > > > > athletics... The only reason I bring this up is to say that while we as OCD parents have SO MUCH to deal with, OCD kids seem to be unusually gifted. I hope I can encourage other OCD parents that there is a good side to all of this. And it actually seems to be getting better. My son, especially, is seeming to be able to work through his problems more. Our prayers have been answered. I have been helped so much by your honest and frank sharing on what you have faced. Just wanted to officially introduce myself because I do have some questions but will save that until later. Take care. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2012 Report Share Posted July 20, 2012 Hello, I am new to this group, having found you after a few very difficult years with my son who has OCD, anorexia, and sensory processing disorder. I'll call him to protect his privacy. If you'll bear with me, I'd just like to start by telling my/our story and invite any of you who relate to pieces of it and feel inclined, to respond in whatever way you are led to. I also want to extend my gratitude for your presence in and as this group and for your willingness to share your journey with me through it. My son is now 16. His father and I started noticing OCD type behaviors and high sensitivities very early in his life, but for the most part, was a happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the happiest year of his life. Then, the summer following 7th grade, we noticed that he looked thinner. He had been preparing many of his own meals, but as he chose healthy foods and seemed to be eating well, we didn't worry about it. Soon after we noticed he looked thinner, he came down with Swine flu and lost an additional 6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never overweight, this loss was significant. Though he had always been strong and very athletically talented, at 72, he had a hard time walking up a hill, had blue fingers and toes, very low heart rate and very low blood pressure. We were so frightened and unclear about why this had happened. didn't exhibit the typical characteristics of people with anorexia. He didn't think he was fat, wasn't worried about getting fat, etc. Now, having realized that he has full blown OCD, we see that 's weight loss was brought on by beliefs that food had to be consumed in certain measurements, certain foods could not be consumed twice in one day, he couldn't eat except at certain times, etc. The first therapist we went to tested for OCD and determined that he didn't technically fit. She said the issue was more about tolerance. didn't like this therapist or want to be there so, of course, the therapy didn't help much. We tried a couple other therapists after that and still, didn't want to be there and wouldn't cooperate by telling them how he felt or what was going on for him. He felt he could get better on his own. I see now that, with no knowledge himself of what OCD was, was unable to perceive that his thought processes were distorted and unreliable. He truly didn't recognize how helpless he was. And his father and I didn't know what we were dealing with either. Now, three years later at 16 years old, is only 89lbs and 5' tall. We have been working with an endocrinologist who, after lots of testing and a few months of hormone supplementation, believes that the lack of growth and delayed puberty is almost certainly because isn't eating enough and exercises obsessively. I believe he's probably correct. We are also realizing that won't be able to eat enough or reduce his exercising without dealing with the underlying anxiety and OCD 's current therapist is treating him, in conjunction with an occupational therapist, for sensory processing disorder. This is her main area of expertise along with trauma and the social and emotional needs of gifted children. She says she recognizes that has OCD, but that it is " complicated OCD " because of the sensory issues. Her first " attack " is toward the sensory processing stuff. She has training in CBT and ERP and has a few other patients with OCD, but she has not initiated any of this type of treatment with . As of a month ago, started taking a very low sub-clinical dose of Lexapro. The therapist wanted to start very low because of the potential for sensitivities to activate and possibly preclude continuing with this or any other medication. We are switching to Celexa because it is covered by insurance and, at present, is taking 4ml/day. No major side effects and no noticeable relief from the OCD. In fact, the scope of OCD's influence seems to have gotten wider. Currently, has compulsions involving preventing any food related substance from touching his face or body, keeping his mouth closed to prevent inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying about what might be on the hands of someone (me, for example) who is touching or hugging him, explaining everything in great detail and expecting his parents to remember everything, exercising in the morning and pm (exact numbers of push-ups and sit-ups, a specific length of time on the eliptical.... any of which might have to be done all over from start to finish if something doesn't feel right or if the process gets interrupted), needing to talk through anything that might be bothering him until it feels right or is resolved, even if that means keeping me up late into the night. He's very attentive to counting and to numbers. Some are good, others bad. and I recently went to Hawaii. He had been begging me for a good vacation, saying it would be the impetus for him to drop some of his routines and rituals. I thought it was worth giving it a try. However, even with Kauai at our fingertips, was more consumed than ever with his compulsions and we both realized how much of a prison he is in. And I feel like I'm often in there with him, as my life is so impacted by his OCD. My main concern now is his weight. The doctor said there's a window of bone growth and, several months back, because 's bone age was still 13, that window was still mostly available. 's growth would just happen later than most boys. But I know that window won't be open for long and the approach the counselor is taking seems so slow and indirect. The work with the OT has not done much of anything. It seems to me that some CBT and ERP now, rather than down the road, is imperative for to be able to eat more and not burn off the calories he needs for growth. We live in a small town and there is only one OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look a residential treatment center, but $ is an issue (insurance won't cover it), and it would mean sending a long way from home. He is very reliant on his dad and me for support, which may sometimes be a problem. I am just not sure what the best thing for him is. I don't know people here who have been through or are going through anything like this. A few other details: is an only child; his dad and I are divorced as of 10 years ago (though we have always had a very amicable relationship); lives with me 2/3 of the time; and we all live in the same town. I'm sorry this is so long. I welcome any insights, encouragement, or shared experience anyone might want to offer. Blessings, Kmikiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2012 Report Share Posted July 20, 2012 Welcome. We're glad you're here. It's so extremely overwhelming. You are very, very well informed. I'm at a loss for specific advice at the moment, but I know others will have some. I just wanted to speak up and welcome you and assure you that you are not alone. > Hello, > I am new to this group, having found you after a few very difficult years with my son who has OCD, anorexia, and sensory processing disorder. I'll call him to protect his privacy. If you'll bear with me, I'd just like to start by telling my/our story and invite any of you who relate to pieces of it and feel inclined, to respond in whatever way you are led to. I also want to extend my gratitude for your presence in and as this group and for your willingness to share your journey with me through it. > > My son is now 16. His father and I started noticing OCD type behaviors and high sensitivities very early in his life, but for the most part, was a happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the happiest year of his life. Then, the summer following 7th grade, we noticed that he looked thinner. He had been preparing many of his own meals, but as he chose healthy foods and seemed to be eating well, we didn't worry about it. Soon after we noticed he looked thinner, he came down with Swine flu and lost an additional 6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never overweight, this loss was significant. Though he had always been strong and very athletically talented, at 72, he had a hard time walking up a hill, had blue fingers and toes, very low heart rate and very low blood pressure. We were so frightened and unclear about why this had happened. didn't exhibit the typical characteristics of people with anorexia. He didn't think he was fat, wasn't worried about getting fat, etc. Now, having realized that he has full blown OCD, we see that 's weight loss was brought on by beliefs that food had to be consumed in certain measurements, certain foods could not be consumed twice in one day, he couldn't eat except at certain times, etc. > > The first therapist we went to tested for OCD and determined that he didn't technically fit. She said the issue was more about tolerance. didn't like this therapist or want to be there so, of course, the therapy didn't help much. We tried a couple other therapists after that and still, didn't want to be there and wouldn't cooperate by telling them how he felt or what was going on for him. He felt he could get better on his own. I see now that, with no knowledge himself of what OCD was, was unable to perceive that his thought processes were distorted and unreliable. He truly didn't recognize how helpless he was. And his father and I didn't know what we were dealing with either. > > Now, three years later at 16 years old, is only 89lbs and 5' tall. We have been working with an endocrinologist who, after lots of testing and a few months of hormone supplementation, believes that the lack of growth and delayed puberty is almost certainly because isn't eating enough and exercises obsessively. I believe he's probably correct. We are also realizing that won't be able to eat enough or reduce his exercising without dealing with the underlying anxiety and OCD > > 's current therapist is treating him, in conjunction with an occupational therapist, for sensory processing disorder. This is her main area of expertise along with trauma and the social and emotional needs of gifted children. She says she recognizes that has OCD, but that it is " complicated OCD " because of the sensory issues. Her first " attack " is toward the sensory processing stuff. She has training in CBT and ERP and has a few other patients with OCD, but she has not initiated any of this type of treatment with . As of a month ago, started taking a very low sub-clinical dose of Lexapro. The therapist wanted to start very low because of the potential for sensitivities to activate and possibly preclude continuing with this or any other medication. We are switching to Celexa because it is covered by insurance and, at present, is taking 4ml/day. No major side effects and no noticeable relief from the OCD. In fact, the scope of OCD's influence seems to have gotten wider. > > Currently, has compulsions involving preventing any food related substance from touching his face or body, keeping his mouth closed to prevent inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying about what might be on the hands of someone (me, for example) who is touching or hugging him, explaining everything in great detail and expecting his parents to remember everything, exercising in the morning and pm (exact numbers of push-ups and sit-ups, a specific length of time on the eliptical.... any of which might have to be done all over from start to finish if something doesn't feel right or if the process gets interrupted), needing to talk through anything that might be bothering him until it feels right or is resolved, even if that means keeping me up late into the night. He's very attentive to counting and to numbers. Some are good, others bad. > > and I recently went to Hawaii. He had been begging me for a good vacation, saying it would be the impetus for him to drop some of his routines and rituals. I thought it was worth giving it a try. However, even with Kauai at our fingertips, was more consumed than ever with his compulsions and we both realized how much of a prison he is in. And I feel like I'm often in there with him, as my life is so impacted by his OCD. > > My main concern now is his weight. The doctor said there's a window of bone growth and, several months back, because 's bone age was still 13, that window was still mostly available. 's growth would just happen later than most boys. But I know that window won't be open for long and the approach the counselor is taking seems so slow and indirect. The work with the OT has not done much of anything. It seems to me that some CBT and ERP now, rather than down the road, is imperative for to be able to eat more and not burn off the calories he needs for growth. We live in a small town and there is only one OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look a residential treatment center, but $ is an issue (insurance won't cover it), and it would mean sending a long way from home. He is very reliant on his dad and me for support, which may sometimes be a problem. I am just not sure what the best thing for him is. I don't know people here who have been through or are going through anything like this. > > A few other details: is an only child; his dad and I are divorced as of 10 years ago (though we have always had a very amicable relationship); lives with me 2/3 of the time; and we all live in the same town. > > I'm sorry this is so long. I welcome any insights, encouragement, or shared experience anyone might want to offer. > > Blessings, > Kmikiah > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2012 Report Share Posted July 21, 2012 Kmikiah, it does sound like he needs intervention for the OCD. Our pdoc says medication with the CBT/ERP is best practice for OCD. Insurance doesn't pay for SI because there isn't a strong research base for it. I am a PT and so see plenty of kids. The OT gets tons or referrals for sensory issues. Even though he is SI certified,he is not one to say all problems are sensory and even if there are, he usually sets up the program and does not see them forever. Usually with sensory, you see it when they are very young. My dd had this as a baby and gradually improved. If you say he was doing ok til 7th grade, I just think you would have seen the sensory earlier. I agree with others that there may be sensory issues there just b/c his system is highly activated now, but primary problem interfering with his life is the OCD/anxiety, which needs to be addressed, especially with the weight issues. You sound very concerned for him and want the best, so you may have to travel to get you started on the right track. Also, Lexapro as recently gone generic so insurance may pay now, if you thought that was better for the anxiety. It worked better than celexa for my anxiety. Roy takes Prozac and that has helped somewhat for him. Others in family take Zoloft. Anyway, you just have to try and see what works. Hope this helps. Funny about the Hawaii trip thing. Roy did the same thing to me. We couldn't swing that but same reasoning about thinking a trip would make it go away. in WI-55 PT in schools Roy-17. Anxiety/Depression/OCD, ADD. Prozac, Busbar, Adderral. dd-24. Anxiety, ADD. ds-22. BP 1 ds-20. Anxiety/Depression dh-58. BP, Anxiety, ADD > > Hello, > I am new to this group, having found you after a few very difficult years with my son who has OCD, anorexia, and sensory processing disorder. I'll call him to protect his privacy. If you'll bear with me, I'd just like to start by telling my/our story and invite any of you who relate to pieces of it and feel inclined, to respond in whatever way you are led to. I also want to extend my gratitude for your presence in and as this group and for your willingness to share your journey with me through it. > > My son is now 16. His father and I started noticing OCD type behaviors and high sensitivities very early in his life, but for the most part, was a happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the happiest year of his life. Then, the summer following 7th grade, we noticed that he looked thinner. He had been preparing many of his own meals, but as he chose healthy foods and seemed to be eating well, we didn't worry about it. Soon after we noticed he looked thinner, he came down with Swine flu and lost an additional 6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never overweight, this loss was significant. Though he had always been strong and very athletically talented, at 72, he had a hard time walking up a hill, had blue fingers and toes, very low heart rate and very low blood pressure. We were so frightened and unclear about why this had happened. didn't exhibit the typical characteristics of people with anorexia. He didn't think he was fat, wasn't worried about getting fat, etc. Now, having realized that he has full blown OCD, we see that 's weight loss was brought on by beliefs that food had to be consumed in certain measurements, certain foods could not be consumed twice in one day, he couldn't eat except at certain times, etc. > > The first therapist we went to tested for OCD and determined that he didn't technically fit. She said the issue was more about tolerance. didn't like this therapist or want to be there so, of course, the therapy didn't help much. We tried a couple other therapists after that and still, didn't want to be there and wouldn't cooperate by telling them how he felt or what was going on for him. He felt he could get better on his own. I see now that, with no knowledge himself of what OCD was, was unable to perceive that his thought processes were distorted and unreliable. He truly didn't recognize how helpless he was. And his father and I didn't know what we were dealing with either. > > Now, three years later at 16 years old, is only 89lbs and 5' tall. We have been working with an endocrinologist who, after lots of testing and a few months of hormone supplementation, believes that the lack of growth and delayed puberty is almost certainly because isn't eating enough and exercises obsessively. I believe he's probably correct. We are also realizing that won't be able to eat enough or reduce his exercising without dealing with the underlying anxiety and OCD > > 's current therapist is treating him, in conjunction with an occupational therapist, for sensory processing disorder. This is her main area of expertise along with trauma and the social and emotional needs of gifted children. She says she recognizes that has OCD, but that it is " complicated OCD " because of the sensory issues. Her first " attack " is toward the sensory processing stuff. She has training in CBT and ERP and has a few other patients with OCD, but she has not initiated any of this type of treatment with . As of a month ago, started taking a very low sub-clinical dose of Lexapro. The therapist wanted to start very low because of the potential for sensitivities to activate and possibly preclude continuing with this or any other medication. We are switching to Celexa because it is covered by insurance and, at present, is taking 4ml/day. No major side effects and no noticeable relief from the OCD. In fact, the scope of OCD's influence seems to have gotten wider. > > Currently, has compulsions involving preventing any food related substance from touching his face or body, keeping his mouth closed to prevent inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying about what might be on the hands of someone (me, for example) who is touching or hugging him, explaining everything in great detail and expecting his parents to remember everything, exercising in the morning and pm (exact numbers of push-ups and sit-ups, a specific length of time on the eliptical.... any of which might have to be done all over from start to finish if something doesn't feel right or if the process gets interrupted), needing to talk through anything that might be bothering him until it feels right or is resolved, even if that means keeping me up late into the night. He's very attentive to counting and to numbers. Some are good, others bad. > > and I recently went to Hawaii. He had been begging me for a good vacation, saying it would be the impetus for him to drop some of his routines and rituals. I thought it was worth giving it a try. However, even with Kauai at our fingertips, was more consumed than ever with his compulsions and we both realized how much of a prison he is in. And I feel like I'm often in there with him, as my life is so impacted by his OCD. > > My main concern now is his weight. The doctor said there's a window of bone growth and, several months back, because 's bone age was still 13, that window was still mostly available. 's growth would just happen later than most boys. But I know that window won't be open for long and the approach the counselor is taking seems so slow and indirect. The work with the OT has not done much of anything. It seems to me that some CBT and ERP now, rather than down the road, is imperative for to be able to eat more and not burn off the calories he needs for growth. We live in a small town and there is only one OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look a residential treatment center, but $ is an issue (insurance won't cover it), and it would mean sending a long way from home. He is very reliant on his dad and me for support, which may sometimes be a problem. I am just not sure what the best thing for him is. I don't know people here who have been through or are going through anything like this. > > A few other details: is an only child; his dad and I are divorced as of 10 years ago (though we have always had a very amicable relationship); lives with me 2/3 of the time; and we all live in the same town. > > I'm sorry this is so long. I welcome any insights, encouragement, or shared experience anyone might want to offer. > > Blessings, > Kmikiah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2012 Report Share Posted July 21, 2012 Thank you to each of you who have responded to my post. It's so good to have input from others who have been in similar positions. Regarding 's sensory processing disorder label, I believe that " diagnosis " initially came out of a Rorschach test his current therapist administered combined with our report of circumstances that bother or have bothered . For example, ever since was little, he could smell and see things other people couldn't, and he was sensitive to the feel of waistbands and wrinkles in sheets. It is still unclear to me what the interchange is between sensitivity and his need to have things " just so " . When he was 4, he struggled for 30-40 minutes every morning to get his underwear on. It turned out that he was watching the tag as he pulled the underwear up his legs and if it moved off center at all, he would pull them off and shout " it's not right!! " . All this said, sensory issues really never got in the way of his life and he didn't require anything particularly special to live comfortably. He also never struggled with anxiety. It was after he lost all the weight that the anxiety and sensitivities came on in full force. I'd never seen melt-downs like the ones he had and, while they have eased up some, he is still very anxious. Now, his sensitivities include things like musculoskeletal tensions, the taste of food in his mouth after eating, most all odors, the feel of clothing on his body, temperature. Some of his current rituals started as attempts to relieve sensory discomfort (ie rinsing his mouth), but now seem to have been taken over by OCD (he rinses upwards of 120 times, counts every one, has to end on a number he likes and with a feeling of rightness). He also has physical quirks like bending his back, opening and closing his jaw, clearing his throat, spitting, and twisting his neck that he does consciously, but repetitively, to relieve unpleasant sensations. They don't have any lasting effect, but he feels drawn to do them in the moment. I don't know if these would be considered Tourettes. His OT administered a sensory assessment that confirmed high sensitivities in most areas. But, as I said, he has always been sensitive. Only after all the weight loss did it become disabling. In public, appears well adjusted, happy, calm and socially comfortable. Most people would not have a clue that he suffers so much, though they would of course notice how small he is and that there are certain things he avoids (like going to gatherings that happen over a meal time, or to places where he will be expected to sit). > > Welcome! In reading your story, I'm wondering what is the reason for your son's sensory processing disorder label? The issues you wrote about all seem OCD compulsions to me, rather than sensory ones. It sounds like you need on a therapeutic dose of medication for OCD and you need a really good OCD specialist to do ERP with him. How much insight does have that his symptoms are all compulsions due to OCD? Is the therapist direct with him about this? Does he understand what OCD is? Since 's health/growth seems impacted, it seems the tactic's being taken need to be stepped up. He needs to be on a therapeutic dose of an OCD medicine, guided by a psychiatrist who treats kids with OCD all the time. Since a psychiatrist doesn't have to see a patient all that frequently, even if you have to travel to see a good OCD psychiatrist, it would be well worth it. Unless he has been diagnosed with being on the autistic spectrum, I think it is time to switch the time and money from the OT to direct OCD exposure and response prevention treatment with an OCD specialist who uses exposure and response prevention, not talk therapy. I would write Dr. Jenike who is a member of the OCD-Support Yahoo group directly for referrals and advice or even call him. He is the top OCD dr. in the country and is very generous with his time and help, so more than likely he will email you back. > > > > > > > Introducing myself > > > > > > Hello, > I am new to this group, having found you after a few very difficult years with my son who has OCD, anorexia, and sensory processing disorder. I'll call him to protect his privacy. If you'll bear with me, I'd just like to start by telling my/our story and invite any of you who relate to pieces of it and feel inclined, to respond in whatever way you are led to. I also want to extend my gratitude for your presence in and as this group and for your willingness to share your journey with me through it. > > My son is now 16. His father and I started noticing OCD type behaviors and high sensitivities very early in his life, but for the most part, was a happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the happiest year of his life. Then, the summer following 7th grade, we noticed that he looked thinner. He had been preparing many of his own meals, but as he chose healthy foods and seemed to be eating well, we didn't worry about it. Soon after we noticed he looked thinner, he came down with Swine flu and lost an additional 6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never overweight, this loss was significant. Though he had always been strong and very athletically talented, at 72, he had a hard time walking up a hill, had blue fingers and toes, very low heart rate and very low blood pressure. We were so frightened and unclear about why this had happened. didn't exhibit the typical characteristics of people with anore xia. He didn't think he was fat, wasn't worried about getting fat, etc. Now, having realized that he has full blown OCD, we see that 's weight loss was brought on by beliefs that food had to be consumed in certain measurements, certain foods could not be consumed twice in one day, he couldn't eat except at certain times, etc. > > The first therapist we went to tested for OCD and determined that he didn't technically fit. She said the issue was more about tolerance. didn't like this therapist or want to be there so, of course, the therapy didn't help much. We tried a couple other therapists after that and still, didn't want to be there and wouldn't cooperate by telling them how he felt or what was going on for him. He felt he could get better on his own. I see now that, with no knowledge himself of what OCD was, was unable to perceive that his thought processes were distorted and unreliable. He truly didn't recognize how helpless he was. And his father and I didn't know what we were dealing with either. > > Now, three years later at 16 years old, is only 89lbs and 5' tall. We have been working with an endocrinologist who, after lots of testing and a few months of hormone supplementation, believes that the lack of growth and delayed puberty is almost certainly because isn't eating enough and exercises obsessively. I believe he's probably correct. We are also realizing that won't be able to eat enough or reduce his exercising without dealing with the underlying anxiety and OCD > > 's current therapist is treating him, in conjunction with an occupational therapist, for sensory processing disorder. This is her main area of expertise along with trauma and the social and emotional needs of gifted children. She says she recognizes that has OCD, but that it is " complicated OCD " because of the sensory issues. Her first " attack " is toward the sensory processing stuff. She has training in CBT and ERP and has a few other patients with OCD, but she has not initiated any of this type of treatment with . As of a month ago, started taking a very low sub-clinical dose of Lexapro. The therapist wanted to start very low because of the potential for sensitivities to activate and possibly preclude continuing with this or any other medication. We are switching to Celexa because it is covered by insurance and, at present, is taking 4ml/day. No major side effects and no noticeable relief from the OCD. In fact, the scope of OCD's i nfluence seems to have gotten wider. > > Currently, has compulsions involving preventing any food related substance from touching his face or body, keeping his mouth closed to prevent inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying about what might be on the hands of someone (me, for example) who is touching or hugging him, explaining everything in great detail and expecting his parents to remember everything, exercising in the morning and pm (exact numbers of push-ups and sit-ups, a specific length of time on the eliptical.... any of which might have to be done all over from start to finish if something doesn't feel right or if the process gets interrupted), needing to talk through anything that might be bothering him until it feels right or is resolved, even if that means keeping me up late into the night. He's very attentive to counting and to numbers. Some are good, others bad. > > and I recently went to Hawaii. He had been begging me for a good vacation, saying it would be the impetus for him to drop some of his routines and rituals. I thought it was worth giving it a try. However, even with Kauai at our fingertips, was more consumed than ever with his compulsions and we both realized how much of a prison he is in. And I feel like I'm often in there with him, as my life is so impacted by his OCD. > > My main concern now is his weight. The doctor said there's a window of bone growth and, several months back, because 's bone age was still 13, that window was still mostly available. 's growth would just happen later than most boys. But I know that window won't be open for long and the approach the counselor is taking seems so slow and indirect. The work with the OT has not done much of anything. It seems to me that some CBT and ERP now, rather than down the road, is imperative for to be able to eat more and not burn off the calories he needs for growth. We live in a small town and there is only one OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look a residential treatment center, but $ is an issue (insurance won't cover it), and it would mean sending a long way from home. He is very reliant on his dad and me for support, which may sometimes be a problem. I am just not sure what the best thing for him is. I don't know people here who have been through or are going through anything like this. > > A few other details: is an only child; his dad and I are divorced as of 10 years ago (though we have always had a very amicable relationship); lives with me 2/3 of the time; and we all live in the same town. > > I'm sorry this is so long. I welcome any insights, encouragement, or shared experience anyone might want to offer. > > Blessings, > Kmikiah > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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