Guest guest Posted August 27, 2010 Report Share Posted August 27, 2010 Heidi, The return to school is anxiety-provoking for many kids, but much more so for ours. Our 10 yo dd is showing signs of increased anxiety with school starting on Monday. However, with medication and some maturity, she gets back in control more easily. I was out this morning working on preparations for the preschool class I teach. DD and my husband were talking about our decision to require her to learn to ride a bicycle before we would pay for horseback riding lessons. She apparently started yelling, screaming, and generally carrying on (but didn't throw anything like she used to). After he finally dropped the subject and left her alone, she went out and took a long walk. She called it " running away, " which she used to do, but I told her her description made it sound more like taking a walk to cool off. She didn't cross any streets and took a familiar path in the neighborhood. She thought we would yell at her, but I told her I thought cooling off was a good idea. I did suggest she leave a note next time instead of just telling her younger sister who forgot to tell dad. Then later today, she did work on the bike riding, did great, and didn't even fall apart when she scraped her elbow fairly badly. Our nearly 8 yr old dd, who has had tics on and off over the last year, has had a sudden increase in the number of motor tics. She claims she is not nervous about school, just excited, but I think it's both. I really think many of our kids would do best with year round school and shorter breaks like they have in some parts of the country. Thinking of you and wishing you all the best, (mom w/OCD, 10 yo dd w/OCD) > > Subject: Re: A bad night > To: > Date: Friday, August 27, 2010, 10:42 PM > I am not sure what I was asking for > either Barb, but I appreciate your answer either way. I like > the " highjacked by lunatic terrorist " comment... actually > made me smile even after tonight... > Thanks! > > > > > > A kid under the spell of OCD follows the rules of > OCD. Parent rules no longer have much meaning, nothing > personal. He still knows the rules just can follow > them right now. You are a good Mum! > > > > When will it get better... Now that is a question > without a definitive answer. However, I was told that > as a general rule, when the medication, if needed, dials > back the anxiety and intensity of the OCD, and when they are > able to do the ERP, from that point it takes about two years > to get to a good place with it all, or at least a much > better place. > > > > I never would have believed it when we were living > endless days captive to the OCD, but that was the > progression for us. The challenge for us, and for > many, was being willing and able to do the ERP. > Whether it is because medications don't work, or create more > or other challenges, or because they simply won't > participate in therapy. > > > > Of course it is very individual and depends on > severity and comorbid conditions. But I have heard > many positive stories of kids doing really well once the > treatment gets under way. The developmental stuff and > maturity factors in hugely too. > > > > Not sure that you were really looking for this answer > or just venting, but thought I'd encourage you either way! > > > > Hang in there Heidi. Remember your kid is still > in there and wants to be able to behave, his brain is just > currently highjacked by a lunatic terrorist called OCD!!! > > > > Hugs, > > Barb > > > > > > > > ------------------------------------ > > Our list archives feature may be accessed at: http://health.groups.yahoo.com/group// > by scrolling down to the archives calendar . Our links > may be accessed at http://health.groups.yahoo.com/group//links > . Our files may be accessed at > http://health.groups.yahoo.com/group//files > . > Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ), Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D. ( > http://www.massgeneral.org/doctors/doctor.aspx?ID=18068 > ). You may ask a question of any of these mental health > professionals by inserting the words " Ask Dr.(insert name) " > in the subject line of a post to the list. Our list > moderators are Castle, Judy Chabot, BJ Closner, and > Barb Nesrallah. You may contact the moderators at -owner > . OCDKidsLoop membership may be accessed at http://health.groups.yahoo.com/group/ocdkidsloop/ > . Our group and related groups are listed at http://health.groups.yahoo.com/group/ocdsupportgroups/links > . IOCDF treatment providers list may be viewed at http://www.ocfoundation.info/treatment-providers-list.php > . > NLM-NIH Drug Information Portal may be viewed at > http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\ l > . IOCDF recommended reading list may be accessed at http://www.ocfoundation.org/Books.aspx . IOCDF > glossary of terms may be accessed at http://www.ocfoundation.org/glossary.aspx > . IOCDF membership link may be accessed at http://www.ocfoundation.net/membership/ . Drugs.com > pill identification wizard may be accessed at http://www.drugs.com/imprints.php . Mayo Clinic > Drug and Herb Index may be accessed at http://www.mayoclinic.com/health/drug-information/DrugHerbIndex > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2010 Report Share Posted August 27, 2010 Barb, yes, she has made a lot of progress. We even went on vacation to New Hampshire this summer, which would have been impossible last summer! She also attended a group sleep-over at a friend's house and has used bathroom's at friends' houses, none of which she could do last summer. I do worry about middle school (next year) and puberty changes, but I guess I should try not to let my anticipatory anxiety ruin things! (mom w/OCD, 10 yo dd w/OCD) > > Subject: Re: A bad night > To: > Date: Friday, August 27, 2010, 11:43 PM > Hi , > > I really sounds like your daughter has progressed a lot > with her responses to challenges. Such a relief isn't > it? Makes you believe they will get there. > > That anxiety that comes with the anticipation of school > starting is hard for them. Ours had it before OCD, and > with it, well it was over the moon. Just have to live > through it and see that they don't die. > > At 19 mine has actually figured out that the structure of > school makes the days more managable and full(he's bored), > and is looking forward to going back. Even though he > really doesn't like school and it's hard for him. > How's that for progress?! > > Barb > > > > > > > > > > A kid under the spell of OCD follows the > rules of > > > OCD. Parent rules no longer have much meaning, > nothing > > > personal. He still knows the rules just can > follow > > > them right now. You are a good Mum! > > > > > > > > When will it get better... Now that is a > question > > > without a definitive answer. However, I was > told that > > > as a general rule, when the medication, if > needed, dials > > > back the anxiety and intensity of the OCD, and > when they are > > > able to do the ERP, from that point it takes > about two years > > > to get to a good place with it all, or at least a > much > > > better place. > > > > > > > > I never would have believed it when we were > living > > > endless days captive to the OCD, but that was > the > > > progression for us. The challenge for us, and > for > > > many, was being willing and able to do the > ERP. > > > Whether it is because medications don't work, or > create more > > > or other challenges, or because they simply > won't > > > participate in therapy. > > > > > > > > Of course it is very individual and depends > on > > > severity and comorbid conditions. But I have > heard > > > many positive stories of kids doing really well > once the > > > treatment gets under way. The developmental > stuff and > > > maturity factors in hugely too. > > > > > > > > Not sure that you were really looking for > this answer > > > or just venting, but thought I'd encourage you > either way! > > > > > > > > Hang in there Heidi. Remember your kid is > still > > > in there and wants to be able to behave, his > brain is just > > > currently highjacked by a lunatic terrorist > called OCD!!! > > > > > > > > Hugs, > > > > Barb > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > Our list archives feature may be accessed at: > http://health.groups.yahoo.com/group// > > > by scrolling down to the archives calendar . > Our links > > > may be accessed at http://health.groups.yahoo.com/group//links > > > . Our files may be accessed at > > > http://health.groups.yahoo.com/group//files > > > . > > > Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ), Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D. ( > > > http://www.massgeneral.org/doctors/doctor.aspx?ID=18068 > > > ). You may ask a question of any of these mental > health > > > professionals by inserting the words " Ask > Dr.(insert name) " > > > in the subject line of a post to the list. Our > list > > > moderators are Castle, Judy Chabot, BJ > Closner, and > > > Barb Nesrallah. You may contact the moderators > at -owner > > > . OCDKidsLoop membership may be accessed at http://health.groups.yahoo.com/group/ocdkidsloop/ > > > . Our group and related groups are listed at http://health.groups.yahoo.com/group/ocdsupportgroups/links > > > . IOCDF treatment providers list may be viewed > at http://www.ocfoundation.info/treatment-providers-list.php > > > . > > > NLM-NIH Drug Information Portal may be viewed at > > > http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\ l > > > . IOCDF recommended reading list may be > accessed at http://www.ocfoundation.org/Books.aspx > . IOCDF > > > glossary of terms may be accessed at http://www.ocfoundation.org/glossary.aspx > > > . IOCDF membership link may be accessed at http://www.ocfoundation.net/membership/ . Drugs.com > > > pill identification wizard may be accessed at http://www.drugs.com/imprints.php . Mayo Clinic > > > Drug and Herb Index may be accessed at http://www.mayoclinic.com/health/drug-information/DrugHerbIndex > > > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2010 Report Share Posted August 28, 2010 Barb, that's encouraging to hear. It's the same thing the psychiatrist and my counselor said. There is hope! Steffanie To: From: barbnesrallah@... Date: Sat, 28 Aug 2010 02:27:54 +0000 Subject: Re: A bad night A kid under the spell of OCD follows the rules of OCD. Parent rules no longer have much meaning, nothing personal. He still knows the rules just can follow them right now. You are a good Mum! When will it get better... Now that is a question without a definitive answer. However, I was told that as a general rule, when the medication, if needed, dials back the anxiety and intensity of the OCD, and when they are able to do the ERP, from that point it takes about two years to get to a good place with it all, or at least a much better place. I never would have believed it when we were living endless days captive to the OCD, but that was the progression for us. The challenge for us, and for many, was being willing and able to do the ERP. Whether it is because medications don't work, or create more or other challenges, or because they simply won't participate in therapy. Of course it is very individual and depends on severity and comorbid conditions. But I have heard many positive stories of kids doing really well once the treatment gets under way. The developmental stuff and maturity factors in hugely too. Not sure that you were really looking for this answer or just venting, but thought I'd encourage you either way! Hang in there Heidi. Remember your kid is still in there and wants to be able to behave, his brain is just currently highjacked by a lunatic terrorist called OCD!!! Hugs, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2010 Report Share Posted August 28, 2010 Oh my goodness, Heidi. My son does this, but I don't think he knows why. My counselor said it's because when I had surgery, I " went to sleep " and could have died. It makes sense, and it's really sad. My biggest worry is, what's going to happen when I DO die? The average life expectancy with the type of brain cancer I have is 7 years. I feel such guilt. I know it's not my fault, but what kind of mom dies and leaves her kids? Having had surgery, that's supposed to increase your life expectancy. My prayer is that I make it until he's an adult and can understand/deal better. It must be horrible for these kids to have this type of worry. Steffanie To: From: hdvoigt@... Date: Sat, 28 Aug 2010 02:40:24 +0000 Subject: Re: A bad night Same thing here only tonight it was coupled with the nonstop hugs. He got furious when I eventually said enough... and tried to distract him with something else to do... a game, TV, a book, etc. He said later that he thought I was going to DIE if he didn't continue saying he loved me and if I didn't say it back " just right " that was why he continued, because I apparently was saying back in exactly the correct tone of voice or something... and that meant I was going to die. So the OCD drove him to latch onto me repeatedly, hug me, then eventually punch me when I tried to pry him off and distract him with alternate activities. Made for a lovely evening of fun... We eventually made it through... and he settled in safely around 9pm... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2010 Report Share Posted August 28, 2010 Steffanie, Don't feel guilty. You didn't ask for a brain tumor any more than he asked for OCD. Medical progress is always happening, and hopefully the two of you will benefit. So glad to hear that he had a good week! When things are tough, I find you really appreciate every little sign of progress. Hang in there; hope the coming weeks are good ones too. Sounds like this school and teacher are much better fits for him. (mom w/OCD, 10 yo dd w/OCD) > > Subject: RE: Re: A bad night > To: " OCD Group " < > > Date: Saturday, August 28, 2010, 8:04 AM > > Oh my goodness, Heidi. My son does this, but I don't > think he knows why. My counselor said it's because > when I had surgery, I " went to sleep " and could have > died. It makes sense, and it's really sad. My > biggest worry is, what's going to happen when I DO > die? The average life expectancy with the type of > brain cancer I have is 7 years. I feel such > guilt. I know it's not my fault, but what kind of mom > dies and leaves her kids? Having had surgery, that's > supposed to increase your life expectancy. My prayer > is that I make it until he's an adult and can > understand/deal better. It must be horrible for these > kids to have this type of worry. > > Steffanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2010 Report Share Posted August 29, 2010 Barb, I've been very honest and open throughout the entire process. My mom is a former hospice nurse (go figure) who told me I shouldn't be talking about it in front of my sons. I disagree. I don't pretend or shy away from things. If I have cancer, I have cancer. The one thing that bugged me most was when people (mostly my dad) would say, " You're going to be just fine. " No one knew that. I very well could have died on that operating table. So I tend to be blunt about it. I make people uncomfortable, but this is my reality. We don't keep anything secret or sugar coat the situation with the kids. We flew from IL to CA for the surgery, and the kids were with us every step of the way. My boys were in ICU with me right after surgery while I was holding my puke bucket, talking away to me while I was out of it and putting lip balm on my " red " lips. My mom made me think that my being so open was part of the reason Liam is so anxious. Maybe it is, but I believe this is something in him that would have come out sooner or later. And my grandpa died of brain cancer. I was 17, and they kept so much a secret from us. I found out so much when I got sick with the same thing. I won't do that to my kids. Yes, we do have a will, too. We've had one since we had kids. My sister and her husband were named guardians prior, but some weird things happened with them 6 months before I had surgery. My best friend and her husband, who share our values and live in the same town as my parents, are now named guardians. We changed it right before I had surgery. I also created a durable power of attorney for healthcare before surgery too. My OCD is major control issues. I have to have my ducks in a row, I have to undertand and I have to be prepared. For me, there's just so much guilt surrounding all this. I feel like my kid's screwed up enough. What's going to happen when I die? I just hope and pray that he's okay and grows up to be a great person! Steffanie To: From: barbnesrallah@... Date: Sat, 28 Aug 2010 13:14:58 +0000 Subject: Re: A bad night Hi Steffanie, Ok, this is really blunt, but in terms of exposures and dealing with OCD, facing the reality of death is common as an obsession for many kids. While it must be impossibly hard for you to have this very real possibility lurking in the background, you survived and are alive and the best focus for your child is this, I think. The OCD will chew away at this regardless of whether there is this reality, because it is always a possibility, we can all die at any time, and it is probably the biggest fear for a kid. The challenge for someone with OCD is that they must allow this fear and doubt to exist and habituate to it. In your situation I would think your family needs to process this reality separate to the OCD, and also deal with it as an obsession under the OCD. Not at all easy I'm sure. But I'm just thinking it is not something to be avoided but rather confronted head on, if the obsessive part is to be dealt with. I'm not sure if you have already outlined how your son will be looked after, and all these realities to put this part at ease some, and then the dealing with it under the OCD is another thing. Hope I am not too blunt with this. I certainly empathize with your situation. Just thinking in terms of the OCD in all of this. Warmly, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2010 Report Share Posted August 29, 2010 Thank you! Oh the ups and downs with this, huh? I hope that when things get back into a school routine it will get better for your son. And for you! Steffanie To: From: anadesigns@... Date: Sun, 29 Aug 2010 13:00:18 +0000 Subject: Re: A bad night This is like reading my mind of what has happened lately. My son is constantly hugging me and jumping on me and saying I love you. I tell him I love him and say " Ok, that is enough, I have to get up now " He is heavy and for him to come and sit on my lap can hurt sometimes We have been having major ups and downs and I think it is because school is starting in a few days and we have also had a hectic last couple of weeks with lots of company. Steffanie - I am so sorry for what you are going through. I know I have not been in touch lately and I feel your pain. All I can say is to think positively, and know that things can change for you in a positive way also. Please know that I am always thinking about you. > > > Oh my goodness, Heidi. My son does this, but I don't think he knows why. My counselor said it's because when I had surgery, I " went to sleep " and could have died. It makes sense, and it's really sad. My biggest worry is, what's going to happen when I DO die? The average life expectancy with the type of brain cancer I have is 7 years. I feel such guilt. I know it's not my fault, but what kind of mom dies and leaves her kids? Having had surgery, that's supposed to increase your life expectancy. My prayer is that I make it until he's an adult and can understand/deal better. It must be horrible for these kids to have this type of worry. > > Steffanie > > > > > > To: > From: hdvoigt@... > Date: Sat, 28 Aug 2010 02:40:24 +0000 > Subject: Re: A bad night > > > > > > > Same thing here only tonight it was coupled with the nonstop hugs. He got furious when I eventually said enough... and tried to distract him with something else to do... a game, TV, a book, etc. He said later that he thought I was going to DIE if he didn't continue saying he loved me and if I didn't say it back " just right " that was why he continued, because I apparently was saying back in exactly the correct tone of voice or something... and that meant I was going to die. So the OCD drove him to latch onto me repeatedly, hug me, then eventually punch me when I tried to pry him off and distract him with alternate activities. Made for a lovely evening of fun... We eventually made it through... and he settled in safely around 9pm... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2010 Report Share Posted August 29, 2010 Heidi, how bizarre is this illness? It sounds like he did really well for you when you really needed him to. I'm glad that things were smooth while you were feeling so awful. So sorry to hear about your migraines. When they found my tumor, I had gotten sick with something else that caused unbearable migraines. I really feel for you. I hope it stays gone for a long time now! Steffanie To: From: hdvoigt@... Date: Sun, 29 Aug 2010 13:54:13 +0000 Subject: Re: A bad night SOOOO funny (ironic not ha ha funny) that I ended up having to go to the ER yesterday because I woke up in the very early morning hours with one of my top three migraines EVER, was barely able to get out of bed, the vomiting, etc. However, Sammy was fine through all of this, he knew I went to the doctor to get medicine because my regular medicine wasn't working for me (I decided he didn't need to know I went to the ER), then we went and spent some time at my mom's house for the first time since before school got out in June. They have not been supportive of things with him, but I really didn't have a choice... he couldn't come with me and I couldn't drive myself as I knew the medication was the kind you REALLY can't drive home after even if I had been feeling better. He really rally when he needed to... spent about three hours at his grandparents, some even with my youngest brother (the one going to college for the first time in a few days), and then came home around 2pm. From that point on I slept off and on on the couch, he played quietly and watched TV, got himself snacks and drinks when he needed. My mom dropped off a fast food Mexican dinner for him, but otherwise he had to fend for himself, because the medication they gave me really wiped me out, and I was feeling better as far as my migraine, but it was still lingering at about a 4-5 on the pain scale (it had been a 10 at least). He would periodically tell me something about his show, I would try to respond, he would give me a few hugs off and on (to which I allowed him this time... lol). Eventually I forced myself to get him his evening meds and then we went up to my room where he watched a little more TV and we both fell asleep there for the night. He hasn't slept in my room forever, and now I know why... he is a bed hog!I feel like a bit of a slacker, but I could barely move, this morning the migraine was down to about a 3, I took one of my pills and it is a bit better. My mom picked him up for church and he will go to respite this afternoon. But isn't funny that even though he has been worried about something happening, when something really does he doesn't even seemed fazed by it? I did attempt to reassure him a few times that I would be fine, that it was just one of my BAD migraines and I simply needed better medicine, maybe that just worked. Maybe when he is worried about me dying he is more worried about the unknown rather than the actual " known " of the migraines? But he wasn't even really fazed my going to my parents' house, and he hasn't been there in months! I am thankful I guess, but still this whole OCD thing is a mystery to me... Heidi Quote Link to comment Share on other sites More sharing options...
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