Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 HI Anne, andra had problems sleeping for years because of anxiety stemming from her OCD. One of the medications she takes now is for anxiety, the other is an SSRI prescribed at the anti-obsessional level. The co-sleeping issue is a tough one. andra too has trouble separating from me for sleep time. For the sake of my own sanity and my marriage, I chose to help andra to learn to fall asleep by herself in her own room, after a consistent bedtime routine. (This took a while.) Our compromise is that in the wee hours, usually 5 or 6 a.m., she can come to Mom and Dad's bed to cuddle up for a few more hours of sleep. This works fine for all of us. About doctors: andra sees a behavioral pediatrician whose specialty is pharmacology (for meds) and a CBT therapist. The meds doc is male and a wonderful person, the therapist is female. We had a terrific male therapist for two years, but andra could never really open up to him the way she has to her new, female therapist. FWIW, just our experience. About telling others: In the beginning I chose to tell several people of andra's diagnosis, because her OCD had gotten to a point where she could not control it in public. So I felt that some of her behavior needed explaining. Now, I share the news on a " need to know, " basis, which always includes her teachers, and some of our close friends. You are so fortunate the Sullivan's OCD does not interfere with school and friends, although it sounds like OCD does make things pretty tough at home. I believe that an OCD specialist named Herb Gravitz lives in your area. Maybe he could give you some leads on treatment options for Sullivan. I am a poor co-therapist for my daughter but I know others on the list have had great success doing therapy with their kids at home. If you choose this route, perhaps you could see a CBT therapist to help you plan exposures and monitor Sullivan's progress. The only hitch to this plan is that if Sullivan didn't actually go with you to the therapy sessions, your insurance might quibble about paying. Well, it's late for me so I'll close for tonight, but please write any time. I think the parents here are so responsive because we've all been in your shoes! This list is a tremendous source of support and information, and I'm glad you found it. Take care, Lesli SFBay Mainla@... wrote: > > Hi Lesli, > My daughter, Sullivan, has been to a couple of doctors that have not been the > least bit effective. My husband and I have read many books, tried CBT > with a little bit of success and consulted doctors without Sullivan. > I got a referral today of a male doctor who I will interview but I am afraid > Sullivan would not respond to a man. She hates any kind of doctor, > pediatrician, dentist, ect. and does not want to be seen by a " feelings " > doctor. > She is aware of her OCD, which she calls her " worries " She now knows other > people have them and that there are ways of helping. She wants me to read > the books and help her myself. As I say, I try that but I think she is not > all that receptive to me and resists me. > She is having alot of difficulty going to sleep right now which makes her > grumpy in the morning. She wants me or my husband to lay down with her or > sleep in my bed. I have resisted this as I would with a " normal " 7 year old, > but now I'm thinking, maybe I should let her sleep with us. I just don't > know. > I am so thrilled to be part of this group, it's a life saver for me. I am > blown away by the reponsiveness of the other parents. Thank you a million > times. > By the way, do you share this with your friends and classmates parents? In > my desperation of the past two years I think I've told too many people and I > now regret it. Sullivan has no behavioral problems at school or with her > friends so I know that they don't see it or are affected by it, but I feel > I've invaded her privacy. > Anyway, sorry it's so long, I haven't had this oppurtunity before. > God Bless you all > Anne > Santa Barbara > > 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@... . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 anncrow49740 wrote: My aunt and niece were quite sick.. they had all the fillings taken out and replaced with non metal fillings ... they eat anything again and feel great...the reason I mention this is I have a son who has Autism and he may have been exposed invitro to Mercury...If you have not hear about a perservative drug co. have been using called Thimerosal it is about half Mercury so if you have been getting and kind of shots ... you need to find out if Thimerosal has been in them Because of the severity of my allergies, I can no longer get preventative type shots... no flu shot, no pneumonia shot, etc. I don't even get allergy shots, because it would be too dangerous for me with how rapidly and severely I react to things I am allergic to. I do get allergy drops to be dropped under my tongue to try to help me to someday desensitize my immune system at least a little bit. My allergist actually treats both allergies and multiple chemical sensitivity, so the whole preservatives thing is already accounted for. ....Good Luck... I'm new to this I hope I did break any rules Thank you for the warning though!! I am new too, but I don't think you broke any rules! Love Always, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Hi Anne, thanks for this post. You sound much like myself. Our surgeon isn't even sure if my son has one-his experience, of course, counts for much. When I said "so , basically you're doing exploratory surgery" he was a little put off but had to agree that I was correct. And why I'm so torn. Reading about all the after surgeries and problems has me tied up in knots. What if we go through all this to find there was nothing there? That would be a terrible outcome for me. A hole in his head and all the effects of that, forever, for nothing.....this is my main concern. I mentioned before, and it probably sounds kind of sick, that the only decent outcome of this surgery, in my eyes, is if they DID find something and it could become, or has become dangerous. Your thoughts on "gratefullness" are right on-I agree wholeheartedely and spend a small portion of each day in the state of "gratitude". I have much to be thankful for. Since I believe that what we focus on we get more of, I choose to give rent in my brain for the beauty of life. And I believe in the miraculous healing power of the body, given the right conditions. This group is helping me see that I can't undo the past (if he has a cholesteatoma it MUST come out) but that I can continue my work to find out WHY it's there and a way to discourage it's growth in the future. Thanks again for your kind words and encouragement. Denna Poulos From: mailtomiddlemas <mailtomiddlemas@...>cholesteatoma Sent: Sunday, July 19, 2009 4:44:58 PMSubject: Re: ] to Tom-again ---I went through a lot of angst trying to decide if my daughter should have the operation. She seemed so normal and the risks and long term management of the surgery seemed overwhelming and unecessary. Basically I didn't trust the doctors because I believe people are often overtreated.Bottom line, she should have had the surgery sooner. The surgeon's saw the cholesteatoma before surgery but didn't know how extensive it was. It was massive and the surgery was 5 hours. Her hearing bones were removed and she will have a second surgery in 6 months. The mass was around her facial nerve and we are lucky to get it before she had paralysis or it invaded her skull. Although I wish this could be me instead of her, I am past the angst and now moving forward with the next step towards the best possible outcome. Grateful for modern medicine that makes that possible. This diagnosis was often fatal before the advent of current medicine and techniques. I try to remember to be thankful and that lets me put aside negative thoughts and be at peace.Anne> > > > > > ____________ _________ _________ __> From: Denna Poulos <supermom1@. ..>> cholesteatoma> Sent: Sunday, July 19, 2009 5:44:06 AM> Subject: ] to Tom-again> > > Tom,> > not sure where you're coming from here-I'm hearing alot of anger towards someone just asking questions-I don't have any guilt-why would you think that? And "common sense" isn't all that common, at times, is it? I didn't make any argument about anything being "outdated". Where did that comment come from? But now that you mention it I guess I would argue that indeed much has changed in medicine in 34 years-it would be freaky scary if it had not, don't you agree? We have a much better understanding of how the body works and how it heals, and I'm not even touching on the psycho-spiritual side of health/disease. And I wasn't chastising you for being blunt. As I'm very new to this group, I was just making a "statement" commenting on your, well, blunt post. Don't take things so personally and don't be so quick to be on the defensive. I mean no harm or disrespect. And just because I haven't suffered with a cholesteatoma myself doesn't mean I have no empathy.> I have loads of empathy. Perhaps you find my questions intrusive because of the human nature to continue to justify decisions made, no matter the outcome or the pain or the dysfunction of those decisions. That is perfectly understandable and common in a group such as this. If I only wanted people to agree with me I would have joined a group called the "don't ever have cholesteatoma surgery" group. I sought out this group to balance my thinking and to hear and learn more about this condition. Period. People like you are helping me immensely, even in ways I never imagined! LOL. Keep well.> Denna Poulos > ____________ _________ _________ __> > > > > > ____________ _________ _________ __> From: Tom Hansen <pingmn123 (DOT) com>> cholesteatoma> Sent: Sunday, July 19, 2009 4:31:24 AM> Subject: Re: to Tom> > > Well, 34 years ago my parents made this choice form me and I'm VERY glad they did what they did. Not much has changed since then so being out dated is not a valid argument. Your allowing YOUR guilt to guide to these questions instead of YOUR common sense. I have never been anything but upfront and blunt here, I will not apologize for it especially to someone who has never had this themselves. I've been on both side of the coin, 2 of my 4 operations where Mom and Dads call, 2 of them where mine. Then you have to choose the least affect method of surgery's or the most affective. Surgery equals pain and the less operations you have the better, do not confuse this with not having the surgery. Good luck to you...> > > Tom Hansen> > > > ____________ _________ _________ __> From: Denna Poulos <supermom1rogers (DOT) com>> cholesteatoma> Sent: Sunday, July 19, 2009 1:02:16 AM> Subject: to Tom> > > Hey Tom, well, that was blunt. But we are in agreement that death is bad. I hear ya!> Denna Poulos > ____________ _________ _________ __> > > > > > ____________ _________ _________ __> From: Tom Hansen <pingmn123 (DOT) com>> cholesteatoma> Sent: Saturday, July 18, 2009 9:36:05 PM> Subject: Re: who regrets having this surgery> > > the worst case if you dont have this surgery is that you will Die...That sounds bad enought for me....> > > Tom Hansen> > > > > ____________ _________ _________ __> From: "supermom1rogers (DOT) com" <supermom1rogers (DOT) com>> cholesteatoma> Sent: Saturday, July 18, 2009 12:33:23 PM> Subject: who regrets having this surgery> > > Hi everyone,> > I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in advance.> Quote Link to comment Share on other sites More sharing options...
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