Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi Peggy, Welcome!! Let me jump straight in (as I don't know how much time I have, just checking the group while I'm at work!) - First, the SSRI - they usually have to be taken at very high doses to touch OCD; high doses as compared to else a person might take an SSRI for, anxiety or depression.... So perhaps that's why you haven't noted yours helping any OCD you might be feeling. Although the medication doesn't necessarily make OCD go away either, can just lessen the anxiety that goes along with OCD & /or perhaps just make it easier to resist the OCD behaviors. (My son is on Celexa, 50mg, and his OCD is still " there " but he is coping with life/school much better now and a lot of the compulsions are gone; but it's " still there. " ) I also had bouts of OCD over the years (I'm 46) and when my son (now 15) began having severe OCD behaviors, I recalled a couple of my own from teenage years (short-lived). But since noted a couple I had at an older age that I hadn't recognized as OCD til learning more about it. At any rate, my bouts were short-lived and my son's seems to be 24/7 life-long! But, as you said, he comes by it honestly. (I since have looked at my own mom and think I see where all this is coming from!) We had no therapist nearby either and have managed on our own. The best help was THIS group! My son was around age 11.5 when his OCD " hit " and I found this group not too long after. It's been the BEST LIFESAVER (maybe I should say " sanity " saver!) He had always had OCD tendencies growing up but they just seemed to get severe with lots of new compulsions, etc., overnight at age 11.5. Sounds like you and your son are doing well working together on this! Well, I had best get back to work! Again, welcome! > I'm a mom with six children. Our third-born child has > (home-diagnosed) OCD. We live in a tiny village of less than > 1000 people, and our doctors are clueless about treatment > options, so we are pretty much on our own with whatever > resources we can find online. > > I first noticed this child was " different " when he was three years > old. He would yank and pull on his clothes because they didn't > " feel right. " I just about went nuts trying to figure out how to > accomodate this quirk and make the poor child comfortable! > Then, about age 4, he had to wear a certain type of socks (over > the knee) and shoes (cowboy boots) and would panic if either > were not available, and had some kind of strange aversion to > looking at or touching Cheerios. Then at age 5 what we call the > " twitchiness " started. Having to touch things a certain number of > times, look at things a certain number of times, repeating certain > words over and over, starting to walk on a certain foot, etc. When > he turned six, I did some research and found out about OCD. We > took an online assessment at the OCF website, and finally had > some answers. > > I read " Brain Lock " and that provided so much help. It was in my > research I discovered that *I* also have had bouts of OCD! I > thought I was borderline psychotic, but as it turns out, dear son > comes by it honestly! is now 11 and we are trying to > get a handle on helping each other before puberty sets in with its > own challenges. > > I am on an SSRI (for another issue entirely) and find that it helps > a LITTLE, but not a lot with my own OCD tendencies. We are > working together, and there are times when I feel more like a > patient than a Mom. > > The PANDAS material in the files section is fascinating. My mom > had rheumatic fever when I was 3, and was confined to bed for a > full year with it. I had recurrent strep infections as a child - I don't > even remember how many, but it was several times a year. At > one point (age 5) I was in an oxygen tent for a week because the > infection had swelled my throat almost completely shut. > was conceived and born at the height of my husband's > battle with Chronic Fatigue Immunodeficiency Syndrome, and > showed some CFIDS indicators even as an infant. He was born > 2 weeks early, and had rather severe jaundice for the first week > or so of life. It wasn't until his sister was born three years later > that we discovered I was strep-B positive, and the doctors have > no idea at what point I contracted it. It would be interesting for us > to discover if either CFIDS or strep-B is precursory. > > I am SO glad to have found this group! > > Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 HI Peggy: Welcome to the group and thanks for sharing your story with us. It sounds like you have managed very well in spite of living in a tiny village where there is no OCD expertise! No mean feat! I look forward to reading more about your son's and your recovery. Take care, aloha, kathy (h) kathy.hi@... > I'm a mom with six children. Our third-born child has > (home-diagnosed) OCD. We live in a tiny village of less than > 1000 people, and our doctors are clueless about treatment > options, so we are pretty much on our own with whatever > resources we can find online. > > I first noticed this child was " different " when he was three years > old. He would yank and pull on his clothes because they didn't > " feel right. " I just about went nuts trying to figure out how to > accomodate this quirk and make the poor child comfortable! > Then, about age 4, he had to wear a certain type of socks (over > the knee) and shoes (cowboy boots) and would panic if either > were not available, and had some kind of strange aversion to > looking at or touching Cheerios. Then at age 5 what we call the > " twitchiness " started. Having to touch things a certain number of > times, look at things a certain number of times, repeating certain > words over and over, starting to walk on a certain foot, etc. When > he turned six, I did some research and found out about OCD. We > took an online assessment at the OCF website, and finally had > some answers. > > I read " Brain Lock " and that provided so much help. It was in my > research I discovered that *I* also have had bouts of OCD! I > thought I was borderline psychotic, but as it turns out, dear son > comes by it honestly! is now 11 and we are trying to > get a handle on helping each other before puberty sets in with its > own challenges. > > I am on an SSRI (for another issue entirely) and find that it helps > a LITTLE, but not a lot with my own OCD tendencies. We are > working together, and there are times when I feel more like a > patient than a Mom. > > The PANDAS material in the files section is fascinating. My mom > had rheumatic fever when I was 3, and was confined to bed for a > full year with it. I had recurrent strep infections as a child - I don't > even remember how many, but it was several times a year. At > one point (age 5) I was in an oxygen tent for a week because the > infection had swelled my throat almost completely shut. > was conceived and born at the height of my husband's > battle with Chronic Fatigue Immunodeficiency Syndrome, and > showed some CFIDS indicators even as an infant. He was born > 2 weeks early, and had rather severe jaundice for the first week > or so of life. It wasn't until his sister was born three years later > that we discovered I was strep-B positive, and the doctors have > no idea at what point I contracted it. It would be interesting for us > to discover if either CFIDS or strep-B is precursory. > > I am SO glad to have found this group! > > Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Peggy, and welcome to the list. Your son's history certainly sounds familiar to me and I'm sure several of us here. Does he take meds or do Exposure and Response Prevention for his OCD? I know you said you read " Brain Lock " , which provides a variant of this type of therapy that can reduce and eliminate OCD. SSRIs usually have to be taken at higher doses than say, for depression, to diminish OCD symptoms. The dose you are taking may be too small to have much effect on your OCD. BTW, glad to hear it's not borderline psychosis after all LOL :-) My daughter is a PANDAS kid, she had an abrupt onset of OCD when 4 years, 11 months old. She's 10 now and doing very well on an SSRI plus a year and a half of CBT/ERP. My impression--I can't support it with a literature search--is that autoimmune disorders are fairly prevalent in the pedigrees of PANDAS kids. At least one doctor I have run across in my reading, links CFIDS, TS, autism, OCD and other problems, as being caused by a disregulated immune system, but I think most see these as distinct disorders. Strep A is the type thought to be involved in PANDAS rather than strep B, but this is a new area of study with many unknowns at this point. Again, welcome, Kathy R. in Indiana ----- Original Message ----- > I'm a mom with six children. Our third-born child has > (home-diagnosed) OCD. We live in a tiny village of less than > 1000 people, and our doctors are clueless about treatment > options, so we are pretty much on our own with whatever > resources we can find online. > > I first noticed this child was " different " when he was three years > old. He would yank and pull on his clothes because they didn't > " feel right. " I just about went nuts trying to figure out how to > accomodate this quirk and make the poor child comfortable! > Then, about age 4, he had to wear a certain type of socks (over > the knee) and shoes (cowboy boots) and would panic if either > were not available, and had some kind of strange aversion to > looking at or touching Cheerios. Then at age 5 what we call the > " twitchiness " started. Having to touch things a certain number of > times, look at things a certain number of times, repeating certain > words over and over, starting to walk on a certain foot, etc. When > he turned six, I did some research and found out about OCD. We > took an online assessment at the OCF website, and finally had > some answers. > > I read " Brain Lock " and that provided so much help. It was in my > research I discovered that *I* also have had bouts of OCD! I > thought I was borderline psychotic, but as it turns out, dear son > comes by it honestly! is now 11 and we are trying to > get a handle on helping each other before puberty sets in with its > own challenges. > > I am on an SSRI (for another issue entirely) and find that it helps > a LITTLE, but not a lot with my own OCD tendencies. We are > working together, and there are times when I feel more like a > patient than a Mom. > > The PANDAS material in the files section is fascinating. My mom > had rheumatic fever when I was 3, and was confined to bed for a > full year with it. I had recurrent strep infections as a child - I don't > even remember how many, but it was several times a year. At > one point (age 5) I was in an oxygen tent for a week because the > infection had swelled my throat almost completely shut. > was conceived and born at the height of my husband's > battle with Chronic Fatigue Immunodeficiency Syndrome, and > showed some CFIDS indicators even as an infant. He was born > 2 weeks early, and had rather severe jaundice for the first week > or so of life. It wasn't until his sister was born three years later > that we discovered I was strep-B positive, and the doctors have > no idea at what point I contracted it. It would be interesting for us > to discover if either CFIDS or strep-B is precursory. > > I am SO glad to have found this group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi Peggy, I live in a small town also, so I can relate to what you're going through. Fortunately our family doctor is wonderful - he is consulting with a psychiatrist from a near by city on medication, dosages, etc. It is a 4-6 month wait to get in to see her, so I'm thrilled that we are getting " second-hand " treatment this way. I understand completely how you feel about turning back the VCR. Once my son was diagnosed (at the age of 15) following a major onset of OCD (which we mistook for anorexia) and I had an understanding of OCD, I felt like one of those cartoon characters with a huge lightbulb coming on over my head. It made so much sense and I could trace OCD back to his early childhood. So could he - and I'm sure it was a huge relief to him to know that his suffering had a name. I felt so awful that he had suffered silently all those years when he could have been getting help and that I probably reprimanded him over the years for a long list of things over which he had NO CONTROL! I'll pass on to you one of the first things his therapist said to me - " This isn't about you or your parenting skills. OCD has absolutely nothing to do with that. Don't waste your time feeling guilty about what you could have or should have done. This is only about helping your son regain control and hopefully being able to go on to a full and happy life. " I could have kissed the man - and I still did have guilt twinges, but they weren't nearly as great as they probably would have been! Hang in there, Gwen > Hi, Kathy. Thanks for the info. The doctor (we have one in town, but only > one) knows zilch about OCD and isn't willing to risk medicating. I do > what ERP I can with him, but being new to all this, I'm still learning. > He is taking high doses of inositol, and I can't really tell if it is > helping, or if his non-medicating times coincide with other factors that > make the OCD more noticeable. > > Hubby even noticed it over Christmas. He had two weeks off from work and > almost drove him up the wall with his twitching, checking and > repetitive motions. Hubby hadn't been exposed to hours and hours of it > before, so he really got to see what it is like. Suddenly, hubby is > saying things like, " Maybe we need a trip to the city for a few weeks to > get him some help, " where before he was saying things like, " Twitching? > What twitching? I don't see him turning lights on and off. What ARE you > talking about? " > > I'm beginning to feel a little guilty. is BY FAR my most > challenging child, and I have thought until recently that he was just > disobedient, moody and rebellious, or that I just wasn't cut out to be > the mother of a boy (we have four of his siblings at home, all girls.) > Now that I'm finding out more about OCD, I'm starting to wonder how much > of what I correct him for is out of his control. Oh, for a rewind button > on the great VCR of life. :\ > > Peggy > > >Hi Peggy, and welcome to the list. Your son's history certainly sounds > >familiar to me and I'm sure several of us here. Does he take meds or do > >Exposure and Response Prevention for his OCD? I know you said you read > > " Brain Lock " , which provides a variant of this type of therapy that can > >reduce and eliminate OCD. Quote Link to comment Share on other sites More sharing options...
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