Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Dear Paige, Our experience has been that started out with just handwashing and some vocal rituals. As he got into the teen years, there was increasing anger nad problems with schoolwork, eating, and bathroom rituals. When he has gone off medication he also has problems with major depression (what led to our present situation). What I think is hopeful is that with the new CBT techniques the young children seem to learn quickly how to " boss back " their symptoms. I only wish we had had those techniques for . He wasn't diagnosed until he was 15 and even then was treated only with medication and talk therapy (which improves nothing). So the answer to your question may be " yes, the symptoms can get worse, especially with adolesence " . But if your child has the tools to deal with whatever manifestation of OCD he has, he should be able to deal with them and not end up terribly disabled. Take care, Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Paige, I have a son who just turned 5, he was diagnosed with OCD a few months ago and has some very similiar " things " such as picking his cheeks,(they look like one huge wound now) his upper lip, and his finger and toe nails. he has to have evrything " just so " or he is nearly impossible to be around and I am constantly walking on eggshells!! He was also diagnosed with ADHD, and ODD as well as having allergies and asthma. I understand that with OCD if diagnosed early, it seems to get worse as they mature. I am not sure why. Welcome and if you would like to vent, I am here!! Angella Progression > Hi, I have introduced myself but been a little overwhelmed with info. > > Couple quick questions. My son is six. ADHD and we are looking into > a OCD diagnosis or sensivity problem not sure. > > My son does not seem to have nearly the severe symptoms I have read > about here, but I was wonder if your children started out at this age > as little things then just got worse over time? > > I have read a bit about physical agression, does this start the same > way? > > Damien is needing things in certain orders already. He also is have a > problem with his face. Hats and jackets can not touch his actual > face. He also picks and rubs eyes, nose, checks and corners of his > mouth. He just can not stop. At six he can already get very > frustrated and angry if this are not just so. Wondering if it starts > this way and get worse as they get older or if he will just have the > mild symptoms he has now. > > Paige > > > You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , Roman, and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at harkins@... . > > > > Shop Safely Online Without a Credit Card http://www.rocketcash.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Paige: My son was diagnosed at 9 with OCD. Almost anyone with OCD will become irritable and angry when we interfere with their rituals. This is due to the incredible anxiety that they feel if they can't respond to the obsession with the compulsion. The first line of defense is for the child to learn ERP (exposure and response prevention). Many need to be on an SSRI to reduce the anxiety enough that they can successfully learn to boss back the OCD monster. Do symptoms get worse with age? Who knows, really. They definitely get worse the longer the child goes without treatment -- specifically ERP and, if necessary, meds. Most of our kids are on an SSRI -- the most effective drug treatment. What you have to keep in mind is that OCD is a chronic disease that waxes and wanes. It cannot be cured, but ERP and the meds give our kids the tools they need to remain in control of their symptoms. Please let us know where you live -- perhaps we can direct you to some local resources. As a reminder to all the listmembers, and especially to the newbies, I strongly urge you to join the Obsessive Compulsive Foundation (go to www.ocfoundation.org) and check out the NAMI (National Alliance for the Mentally Ill) website: www.nami.org. Both of these organizations have lists of support groups, faq sheets, etc. Jule in Cleveland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Paige, In retrospect I believe that Devon showed signs of OCD at a very early age. As a pre-schooler he would pick at the skin around this thumbs until they would bleed. He just couldn't stop that " habit " as I thought it was. The tantrums because things weren't " just so " or because he was touched " wrong " or because something was " different than it had always been before " were (I thought) symptoms of his sensitive personality. When school began and he became more and more determined (as the years went by) that homework with erasures or not " enough " words was something to really worry about...a lot... I began to recognize that this was something more than a difficult personality type. Of course his LD is a big contributing factor to some of his symptoms (i.e. school work is challenging and thus he has this kamikaze approach to it) but I feel that the cards were stacked against him from day one. Sooooooo yes I think that there is a progression if left untreated (like Devon was for so many years). Knowledge is power, and so you have the chance influence the outcome of your own story. Good luck and God bless us everyone ;-) Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Hi Paige, my daughter will be 7 on Wednesday. I think OCD can get worse with time, perhaps because our kids' lives get more complex and there's so much more for OCD to get wrapped up into as they get older. I've watched this progression in my child, from onset when OCD interfered with home things such as meals and clothes, through first-grade now with additional pressures to be acceptable to the peer group, to meet expectations at school, more demands on time, etc. Many on this list, whose children were diagnosed when older, have mentioned they could look back and remember OCD tendencies in their kids many years before diagnosis. I've read that a very young onset predicts a poor prognosis, but my daughter's psychiatrist told me that this observation was drawn from groups of children who were untreated, in some cases for decades following onset. It was not too long ago that OCD was believed to be very rare, many sufferers were undiagnosed or wrongly diagnosed, there were no effective treatments known for OCD, and the outlook was pretty hopeless. OCD does wax and wane, and ranges in severity from subclinical to severe, and I don't think it's possible to predict the course of the disorder in a particular child with any certainty. I think there is a lot of reason for optimism and hope for our kids, as they are among the first to grow up with effective meds and therapies available. My daughter was dysfunctional two years ago, her fifth birthday was bleak and miserable for us all. With proper meds and E & RP she now is a happy, outgoing and competent girl whose OCD is firmly in the background, and I feel very fortunate that she was born when she was, or her life would undoubtedly be turning out very differently. I'm sorry I don't know much about physical agression in OCD, except that I don't think it is usually part of the disorder and may suggest another co-morbid diagnosis. Many kids with OCD have other diagnoses as well. Kathy R in Indiana ----- Original Message ----- From: " Paige " <ovickp@...> > Couple quick questions. My son is six. ADHD and we are looking into > a OCD diagnosis or sensivity problem not sure. > > My son does not seem to have nearly the severe symptoms I have read > about here, but I was wonder if your children started out at this age > as little things then just got worse over time? > > I have read a bit about physical agression, does this start the same > way? > > Damien is needing things in certain orders already. He also is have a > problem with his face. Hats and jackets can not touch his actual > face. He also picks and rubs eyes, nose, checks and corners of his > mouth. He just can not stop. At six he can already get very > frustrated and angry if this are not just so. Wondering if it starts > this way and get worse as they get older or if he will just have the > mild symptoms he has now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 HI Angella (and Paige): YOu must be reading some of the same books I did about OCD. You wrote: >I understand that with OCD if diagnosed early, it seems to get worse as they >>mature. I am not sure why. From what I understand now from more current research done by experts like Dr. Edna Foa, with effective E & RP treatment, many young OCD sufferers are able to live very fruitful lives. They learn the techniques to manage their OCD and it goes into the background of their lives. In addition according to Dr. Foa, people whose OCD is treated in childhood do not tend to have the relapses as people do when they are treated as adults. I hope our list docs can comment on this too. Good luck with getting your children's OCD treated effectively and soon, take care, aloha, Kathy (H) kathyh@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 To Paige, Our experience with and violencestarted when we did as advised and removed him forcibly from the bathroom after 15 minutes. We were all bruised for days. As far as I can tell, most of the agression came when he was forcibly kept from rituals and when he was quite depressed. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 HI Paige: I can really relate to what you said about feeling overwhelmed with information. In time you will start to realize what an expert you have become and can give yourself a very well-deserved pat on the back for studying up on OCD so much. Generally OCD symptoms do creep up slowly. Also we find that until we learn what OCD is, we overlook many typical symptoms. Also OCD symptoms wax and wane typically. OUr beloved OCDers tend to be very secretive about their symptoms so we often only see the tip of the iceberg of what is going on. Sudden onset with severe symptoms is more typical of PANDAS (pediatric autoimmune neurobiological disorders associated with strep) which is presently believed to be a relatively rare type of OCD in kids. (hope I have explained the acronym correctly :-))))) Physical aggression associated with OCD is more common in teens with OCD. Sometimes it can be a symptom of a different NBD (neurobiological disorder). The severity of his symptoms can be assessed by administering the CY-BOCS (Child Yale-Brown Obsessive Compulsive Scale). Certainly you are describing symptoms at a level that are affecting your son's quality of life and merit treatment. Symptoms do tend to morph over time. OCD can be manifested in many, many ways only limited by human imagination. You son is very lucky that he has you on his side helping him learn how to manage his OCD. Take care, aloha, Kathy (H) kathyh@... At 01:46 AM 01/06/2001 -0000, you wrote: >Hi, I have introduced myself but been a little overwhelmed with info. > >Couple quick questions. My son is six. ADHD and we are looking into >a OCD diagnosis or sensivity problem not sure. > >My son does not seem to have nearly the severe symptoms I have read >about here, but I was wonder if your children started out at this age >as little things then just got worse over time? > >I have read a bit about physical agression, does this start the same >way? > >Damien is needing things in certain orders already. He also is have a >problem with his face. Hats and jackets can not touch his actual >face. He also picks and rubs eyes, nose, checks and corners of his >mouth. He just can not stop. At six he can already get very >frustrated and angry if this are not just so. Wondering if it starts >this way and get worse as they get older or if he will just have the >mild symptoms he has now. > >Paige Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Paige, In retrospect I believe that Devon showed signs of OCD at a very early age. As a pre-schooler he would pick at the skin around this thumbs until they would bleed. He just couldn't stop that " habit " as I thought it was. The tantrums because things weren't " just so " or because he was touched " wrong " or because something was " different than it had always been before " were (I thought) symptoms of his sensitive personality. When school began and he became more and more determined (as the years went by) that homework with erasures or not " enough " words was something to really worry about...a lot... I began to recognize that this was something more than a difficult personality type. Of course his LD is a big contributing factor to some of his symptoms (i.e. school work is challenging and thus he has this kamikaze approach to it) but I feel that the cards were stacked against him from day one. Sooooooo yes I think that there is a progression if left untreated (like Devon was for so many years). Knowledge is power, and so you have the chance influence the outcome of your own story. Good luck and God bless us everyone ;-) Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2011 Report Share Posted August 10, 2011 Thank you, Oliver, that's interesting if I understand the implications of what you are saying for my questions. CLL progression itself is one issue, but the development of secondary illnesses, is another and, in many, perhaps most, cases, is also the more important issue. And, while generalizing is not realistic, one thing that many secondary illnesses may share in common is being multiply determined. So the degree to which CLL has progressed is but one of many factors that determine whether and when secondary conditions arise. It may be a necessary cause of most of them, but not a sufficient cause. The other causes include a variety of genetic and environmental factors and their interactions, and these will vary between CLL patients who have experienced the same degree of progression and have the same biomarkers. Plus these other risk factors are often not yet identified/measurable and as you say the biomarkers can change. So, you cannot predict the occurrence of secondary conditions from just degree of progression plus biomarkers. Therefore, having a precise index of progression, if that were even possible, would not tell you much about prognosis, where the prognostic question of interest is not expected future rate of progression, but the occurrence of secondary conditions and need for treatment. ________________________________ From: oliver kurer Walters Sent: Wednesday, August 10, 2011 6:05 PM Subject: Re: progression My understanding is that few people die from CLL but rather from secondary illnesses which occur. More often than not this is very individual. The time to treatment may well depend on the development of secondary illnesses as disease progresses, and so will the length of your remission after first treatment to subsequent treatment. The various test including FISH and biomarkers can change over time. They are normally done prior to considering treatment because they may influence the choice of treatment. BMBs are not very pleasant - you may need another one after treatment to check for Minimal Residual Disease: but there are less invasive means. Oliver aged 55 dx 2008 WBC 300,000 tx FCR 5 cycles Sep2010 /message/15723 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2011 Report Share Posted August 11, 2011 This is the big question that surrounds prognostics. It is important to remember that statistics can only predict the behaviour of a population, not an individual. Changes in stage (Rai or Binet) are the most helpful in determining whether one is progressing and when it is time to treat. The longer one goes without needing treatment, the more indolent their disease is, regardless of prognostic markers. Rick Furman, MD Walters wrote: /message/15723 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2011 Report Share Posted August 11, 2011 Hello Walter, Progression is a highly individual measure; the variability across our CLL population is so great as to negate any useful inferences from statistics, or from the anecdotal experiences even of others with similar markers and profiles, however that might be defined. That is one reason why having the assistance of a researcher-clinician CLL specialist on your treatment team is so important - they do not view the disease or patients as stereotypes, and have personal experience of the range of possibilities. (Incidentally, the question arises, what good are statistics if a patient can find no use in them. Some answers are that broad, accurate population measures permit policy and fiscal planning for health care infrastructure and direct treatment budgeting among states and nationally. Epidemiologists can detect disease trends and recommend individual and government actions toward response or prevention. And, disease statistics can be applied in justifying and prioritizing support for research into treatments and cures.) I have found that being aware of the range of possible disease courses, primary and secondary, has helped me be alert (and alert my doctors) to emerging problems. For instance, I knew in advance that secondary cancers are more common among CLL'ers. So, I and the physicians with whom I shared this statistical fact and detailed information detected prostate cancer and multiple/continuing skin cancers early. On the other hand, every aspect of my immune system is seriously to profoundly impaired, but I haven't had so much as a cold in six years of CLL and two years post-RFC. Would recommend you continue your apparent course: learn as much as you can, and be alert to emerging symptoms. I treat my CLL as yet one more subject that is fascinating to study - it is now one of my hobbies, but not an obsession. Finally, give up on attempting to prognosticate - accept the natural course of your overall health, and opt for treatment when it is indicated by science-based diagnostics. Do what you can to maintain your health, of course - good diet, frequent reasonable exercise, and a positive social- emotional environment - and get on with the best life you can lead, as you define it. Regards, Tim Klug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 Does CLL ever NOT progress; in other words, is it inevitable that whether quickly or slowly we are all destined for a steady decline? Are we feeling today the best we will ever feel? Not trying to be depressing but the emotional aspects of this dx seem to have gotten the better of me lately. Husband has a cold and am deathly afraid to go near him or touch anything - fear is that I will catch his cold, will get pneumonia and then that will be the beginning of the end. Every cough and ache and weird feeling seems to portend the worse scenario. I realize this is mostly a medical, not emotional forum, just wondered if there are CLL folks out there that are stable and have stayed that way their whole lives. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 There is most definitely an emotional side to dealing with any chronic illness and is part of the medical aspect. I was told by a social worker, when first diagnosed, that some people are hit when they are first diagnosed, some when they start treatment and some may go for years and all of a sudden feel they are falling apart. I was one of those. After 7 years of coping very well I just stopped coping. I am blessed with a doctor who picked up on it right away and connected me with a social worker who she knew I had worked with on various CLL related projects. Don't be afraid to discuss this with your doctor or seek out a social worker, psychologist or psychiatrist who deals with chronic illness. It brought me back into the land of the living. I have many on line CLL friends who have found at various times that they also have needed help. My former principal's mother had CLL for many years and passed away in her 90's of old age. The panicky feeling when around sick people is pretty common also. All the reactions to the HINI virus proved that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 Don't keep your feelings in. Get counseling and perhaps medication. My husband has CLL. He was having anxiety and depression during treatment and after but never told me or his doctors. Finally a few months ago he told his doctor and me. He started medication for the anxiety and depression. He isn't one for counseling. The medication and a trip to the beach with granddaughters has help him and he seems to be his old self again. It also helped with the fatigue he had not been able to get rid of. Best to you in your journey through this illness. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 Although I have Stage 2 CLL, my mom was diagnosed at age 77 at stage 0 and lived to age 91 with no CLL progression. She had other cancers and illnesses but all her blood counts remained the same as at diagnosis. The diagnosis had been confirmed with a BMB. Best wishes, Q Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2011 Report Share Posted September 9, 2011 One thing you learn as time goes on is that there are no hard and fast rules re CLL. Some people progress slowly, some don't progress and don't need treatment during their lifetime and some people progress at a faster pace. It is quite unsettling and it is good to talk to someone and not keep things bottled up. You have a lot to deal with. R Adks NY Quote Link to comment Share on other sites More sharing options...
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