Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Hi, Interesting that when we adults have something we are particularly interested in and spend as much time as possible doing it, it's called a 'hobby'...but when it's a child with a diagnosed disability or condition it's called OCD! ( BTW, I collect fish, shells and other nautical stuff and have them all over my house - OCD or hobby?) Sharon from West Oz >Hi , >Welcome! I am a lurker to this group. My daughter is 8 and we were >active early on but now I lurk. I saw your post and wanted to know >if you were in the Philly area. We live outside of Glenside, PA. >We go to CHOP for everything. > >I wanted to comment on the lining up of cars. Before you attribute >it to CHARGE, my son who does not have CHARGE used to do this at >your son's age. I have friends whose kids did it too. It may just >be a boy thig. My dad knows every car in his neighborhood and >church and questions when they are moved as well. There may be >other behaviors but remember that sometimes they are just " kid " >things. It's hard to tell because we are so encompassed by CHARGE. >I have at times tried to find answers for my daughter's issues and >come to find it was just a part of normal girl development......I >couldn't believe it!!Something normal when it comes to her?? > >Also, on the genetics thing. My daughter's geneticist also >explained to us that when tested, may or may not test positive >for the CHARGE gene. She made it clear to us that does have >CHARGE and that the results of the test would only reinforce the >diagnosis if she tested positive. If she tested negative, it would >only mean she fell into a different category of the diagnosis >because gene found is only part of the whole syndrome. This >explanation is not entirely acurate. It is my understanding of the >explanation given by the geneticist. > >Colleen >Ardsley, PA >mom to , 8 and Sam, 4 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Sharon, perhaps it depends on how it looks in your house!! (just kidding, but I couldn't resist). pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Yes, that's true! Maybe I should ask my husband what he thinks! hugs, Sharon >Sharon, >perhaps it depends on how it looks in your house!! (just kidding, >but I couldn't resist). >pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Sharon, i guess if he likes it he will suggest a hobby, but if he doesn't then calling it an obsession means it might go away!! Well, the weather report has just suggested that we will get from 12 to 18 inches of snow overnight. It is about time, in my opinion!! We live close to the coast so many of the snow storms this year (not bad or many) have mostly fizzled or been rain more than snow. I am a little excited, but don't tell anyone!! take care and glad you are back. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 OCD fascinates me...although there are behaviours that are clearly OCD, and can interfere greatly with daily living and learning, I think a lot of behaviours that are labelled as OCD may not be...several messages recently have mentioned boys interested in and lining up cars...I know a young girl (CHARGE) who also was very interested in cars (obsession?) and lined up cars as well, when she was about 2 1/2 yr old ...she is now 4 and although still interested in cars (and lots of other things), does not line them up anymore...she does not appear (not to me anyway) to have any OCD behaviours...so was this just a passing interest that served a purpose for her? Or could it have become an OCD if she had not been allowed to follow her interest? An interesting area for some research! Sharon from W Oz >Sharon, >perhaps it depends on how it looks in your house!! (just kidding, >but I couldn't resist). >pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 " ...Or could it have become an OCD... " This idea has always catched Andy's and my attention. When was just starting school, one of her teachers (I later learned that she herself had severe OCD --- again, it helps to have " contacts " ) decided that had OCD because of her need to control lights. Our psych friend, as I've said before, opined that, yes, this could turn in to true OCD if the teacher continued to make an issue of it. This all happened during @ a one year period or longer of a staph infection in K's ears that didn't respond to drugs. The child was in constant pain, never adequately treated, and her hearing was failing. How I fear adults basically making certain that OCD will be an outcome when perhaps it doesn't have to happen. I hope that makes sense to parents of younger kids. It seems to me, oh, so many years later, that would have been much better served if we had dealt with things as symptoms (in her case, of pain) rather than of some sort of psych problem. Things can indeed turn into a promised prophesy. Then again, so many of our kids have OCD... I have no answers, only questions raised by what we've experienced over the years - and mistakes I believe we've made. But, I could be wrong. Perhaps it hasn't been a matter of mistakes but part of the entire CHARGE package. May we all eventually know the answer. Martha I've rambled again. Met with the dim wit parent of 's potential housemate tonight and am just ga ga. The house is lovely. The landlords (who're absolutely lovely) have a child with severe disabilities and many houses. I want the dim wit to accept this. Meanwhile, I really am ga ga and apologize. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 > > OCD fascinates me...although there are behaviours that are clearly > OCD, and can interfere greatly with daily living and learning, Be carefull there... it takes us CHARGErs longer to accomplish something so what may seem like its interfearing, is it really interfering or just that chargers take longer to get jobs done and the rest of the world just dosnt have the patients to wait that extra 10 minuts... I > think a lot of behaviours that are labelled as OCD may not > be...several messages recently have mentioned boys interested in and > lining up cars...I know a young girl (CHARGE) who also was very > interested in cars (obsession?) and lined up cars as well, when she > was about 2 1/2 yr old ...she is now 4 and although still interested > in cars (and lots of other things), does not line them up > anymore... Thats a normal developmental stage with children and learning. Weather they are stacking blocks, vidios or cars. She is just showing the first stage of block play. Because she was all ready 2 at the time, you have to look at 2 things, was she exposed to block for play at 6 months or was she in Intensive care laying on a hospital bed? Im not saying that there couldnt be developmental delay cause of brain stuff but im just trying to argue the flip side. she does not appear (not to me anyway) to have any OCD > behaviours...so was this just a passing interest that served a > purpose for her? Or could it have become an OCD if she had not been > allowed to follow her interest? > Who knows. I know for me, not being allowed to do sertain games as a kid, like building blocks, creative anything fun, i do find i have the need to " play " kid games. What we are learing in ECE is that play is important and is not nessicarily a age level but a skill level and all kids (regardless of age) have to progress from each stage before they can progress compently to the next. Play is important and it teaches skills that children can use in later learning. (social interactions, space reasoning, pre math skills ect) I think each " ocd " for kids should be examined carefully. Look at the time to compleat activities. What the " ocd " is. Why is the child doing it. Maby the child needs the oral stimulation of chewing on a toothbrush (brushing teeth 200 times a day). hand washing. Ive seen children wash their hands constantly and say its cause of germs. That would be an ocd. Then there are other kids who do it cause they like the feel of water on their hands. When analizing if its interfearing with dayly activities. Is it interfearing with the parent's or the child's activities. I agree with another poster though, if its a non dissabled person, its a hobby and if its a dissabled person its an ocd. Its like Some people saying Chip's stuffed animal and pokemon collections are ocd and childish however i see that as a hobby. Lots of adults collect stuffed animals. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Debbie, Wow, I am so happy for you and for . Patty has been on Riperdal since she was around 12 and I swear it has been what has let her function in this world wonderfully. Sure she goes to therapy, we watch her health, we understand her stresses, we modify for her disability, we do, we do, we do, (or try to) but even with all that she just wouldn't be able to live without her medications. I do have to warn you that as she grew we had to change the dosages here and there. Sometimes we lessened it, sometimes we increased it. There were also times that we had to add another medication, quanfacine because her tics had increased. But that medication was diminished years ago. We recently tried to diminish the Risperdal but so far she hasn't been able to do that. Her tics come back and her OCD is worse. We'll try again as life becomes easier for her. We'll see. We also started a med, celexa, for anxiety about a year ago. It was like she was a flower opening even more beautiful than she already is. I understand what you mean about the OCD and the hobby. It is the thinking and thinking part that can get Patty in a fix. But if his hobby is something he loves you can reduce the stress of the OCD part and turn it into something good, like a career one day. I am so happy to hear of starting to eat. It could just be a coincidence, but it could also be that he is calm enough to be able to accept the physical and emotional process of it all. Great news all around. He must be so proud! Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Chantelle- Good point! I remember Aubrie's PT explaining that her body may need to practice something 1000s of times compared to a " typical " kid practicing 100s before her body, system, and muscles would have a memory and capacity for doing it well. It is hard for other people to remember and have patience with this. And for the extra time to listen, hear, process, formulate a response, and say it... Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 This is interesting to me. I notice 's OCD escalate when not feeling well. Update! He started on Risperdol 3 weeks ago and is doing fantastic. HE STARTED EATING! We actually cut the tube feeding in half! It's Amazing. With the meds, his mood is better and little OCD things are not really there anymore, like lights on and off, doors closed etc., only the big ones stay and I am wondering if it is OCD at all and not really a TRUE Hobby. He is fascinated with movies, he wants to be a director. He wants to go to film-making school. I am going to see what kind of classes I can find for him. I think the hobby is the movies, and the OCD part is just that he can't stop thinking about it because he loves it so much. He really wants to do something with making movies when he grows up, it's very interesting. Debbie Matasker mom to w/CHARGE 8.5, 11, andra 6 Re: OCD or hobby?? Yet again the topics on this list are what we are dealing with at the moment. Patty's OCD's were intense recently but after she had surgery on a torn meniscus in her knee they went away. It was so nice. But they came back. She was really grouchy lately and doing things like slicking her hair back, wearing hats and picking her fingernails. Suddenly they became intense. When that happens her OCD interferes with her life. I couldn't figure out why. Finally I got really concerned because she was lining up her shoes again. Then she went to get her stitches out. Once they clipped the stitches all this guck came out and her knee turned bright red. It was disgusting. She suddenly had a whopper of an infection. The very next day she became congested and ended up having the same guck come out of her ears. She had no fever and little pain-anywhere. But she was sick. That's the reason for her OCD's this time. Since she's been on antibiotics for a few days they are minimal once again. I just wish there was a way that her body would tell her she was ill the way ours do. But that's not ever going to happen. We just have to figure it out as they come. UGH. I must also admit the posts were funny here in other ways. Patty was never a girlie girl and loved to play cars. She also lined them up, but that was her play that she did with her father! Patty also had a collection of model cars displayed around her room. a on the other hand had her doll collections. And my niece had a pencil collection. I also have to admit that I collect rocks and have for over 20 years. I have a rock from everywhere we've been and can tell you which rock is which. I even have a rock from Gettysburg in my car. I also collect beach sand and now I am starting to collect shells. You wouldn't believe what I brought home from Miami! only lets me keep them in our upstairs bathroom. He thinks I am nuts. Oh well, it doesn't hurt anyone and they make me smile. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 , it was a good one, wasn't it?!!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 A very good point Chantelle...the energy it must take would be massive for someone with hearing loss, vision impairment, balance issues, medical issues, etc, to put it all together, process it and make some sense out of it all...this is going to take time and energy. Sharon from W Oz > >> >> OCD fascinates me...although there are behaviours that are clearly >> OCD, and can interfere greatly with daily living and learning, > >Be carefull there... it takes us CHARGErs longer to accomplish >something so what may seem like its interfearing, is it really >interfering or just that chargers take longer to get jobs done and >the rest of the world just dosnt have the patients to wait that >extra 10 minuts... > > >I >> think a lot of behaviours that are labelled as OCD may not >> be...several messages recently have mentioned boys interested in >and >> lining up cars...I know a young girl (CHARGE) who also was very >> interested in cars (obsession?) and lined up cars as well, when >she >> was about 2 1/2 yr old ...she is now 4 and although still >interested >> in cars (and lots of other things), does not line them up >> anymore... > >Thats a normal developmental stage with children and learning. >Weather they are stacking blocks, vidios or cars. She is just >showing the first stage of block play. Because she was all ready 2 >at the time, you have to look at 2 things, was she exposed to block >for play at 6 months or was she in Intensive care laying on a >hospital bed? Im not saying that there couldnt be developmental >delay cause of brain stuff but im just trying to argue the flip side. > > >she does not appear (not to me anyway) to have any OCD >> behaviours...so was this just a passing interest that served a >> purpose for her? Or could it have become an OCD if she had not >been >> allowed to follow her interest? >> > >Who knows. I know for me, not being allowed to do sertain games as a >kid, like building blocks, creative anything fun, i do find i have >the need to " play " kid games. What we are learing in ECE is that >play is important and is not nessicarily a age level but a skill >level and all kids (regardless of age) have to progress from each >stage before they can progress compently to the next. Play is >important and it teaches skills that children can use in later >learning. (social interactions, space reasoning, pre math skills >ect) > >I think each " ocd " for kids should be examined carefully. Look at >the time to compleat activities. What the " ocd " is. Why is the child >doing it. Maby the child needs the oral stimulation of chewing on a >toothbrush (brushing teeth 200 times a day). hand washing. Ive seen >children wash their hands constantly and say its cause of germs. >That would be an ocd. Then there are other kids who do it cause they >like the feel of water on their hands. When analizing if its >interfearing with dayly activities. Is it interfearing with the >parent's or the child's activities. > >I agree with another poster though, if its a non dissabled person, >its a hobby and if its a dissabled person its an ocd. Its like Some >people saying Chip's stuffed animal and pokemon collections are ocd >and childish however i see that as a hobby. Lots of adults collect >stuffed animals. > >Chantelle > > > > > > > > >Membership of this email support groups does not constitute >membership in the CHARGE Syndrome Foundation or CHARGE Syndrome >Canada. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter), >please contact marion@... or visit >the web site at http://www.chargesyndrome.org - for CHARGE Syndrome >Canada information and membership, please visit >http://www.chargesyndrome.ca or email info@... . >8th International >CHARGE Syndrome Conference, July, 2007. Information will be >available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Debby, To me one way to tell that it is a neurological issue and not a hobby, is that it impacts his social skills - going into a dissertation about his favorite movie and not noticing that others tune out, or only focusing on the movie and not having connection with people (as his norm). All children (people) do pursue their interests, but we learn to stop it (at least most of the time) when we need to and think about something else like school or coming to dinner or talking with grandma when she comes to visit.... I do think our kids can get stuck in a rut where they cannot get back on track without supports of some kind (sometimes those can be relaxation techniques, behavioral plans, medicine, alternative therapies or whatever). I do think it is a huge task to figure out how much is simply their personality and how much is it that there is a raodblock to the development of that personality. I am glad he is having a good response to the risperadal. Kim L > This is interesting to me. I notice 's OCD escalate when not feeling > well. > > Update! He started on Risperdol 3 weeks ago and is doing fantastic. HE > STARTED EATING! We actually cut the tube feeding in half! It's Amazing. > > With the meds, his mood is better and little OCD things are not really there > anymore, like lights on and off, doors closed etc., only the big ones stay > and I am wondering if it is OCD at all and not really a TRUE Hobby. He is > fascinated with movies, he wants to be a director. He wants to go to > film-making school. I am going to see what kind of classes I can find for > him. I think the hobby is the movies, and the OCD part is just that he > can't stop thinking about it because he loves it so much. He really wants > to do something with making movies when he grows up, it's very interesting. > > > Debbie Matasker mom to w/CHARGE 8.5, 11, andra 6 > > > > Re: OCD or hobby?? > > Yet again the topics on this list are what we are dealing with at the > moment. > Patty's OCD's were intense recently but after she had surgery on a torn > meniscus in her knee they went away. It was so nice. But they came back. > She > was really grouchy lately and doing things like slicking her hair back, > wearing > hats and picking her fingernails. > > Suddenly they became intense. When that happens her OCD interferes with her > > life. I couldn't figure out why. Finally I got really concerned because > she > was lining up her shoes again. Then she went to get her stitches out. Once > > they clipped the stitches all this guck came out and her knee turned bright > red. It was disgusting. She suddenly had a whopper of an infection. The > very > next day she became congested and ended up having the same guck come out of > her > ears. She had no fever and little pain-anywhere. But she was sick. That's > > the reason for her OCD's this time. Since she's been on antibiotics for a > few > days they are minimal once again. I just wish there was a way that her body > > would tell her she was ill the way ours do. But that's not ever going to > happen. We just have to figure it out as they come. UGH. > > I must also admit the posts were funny here in other ways. Patty was never > a > girlie girl and loved to play cars. She also lined them up, but that was > her > play that she did with her father! Patty also had a collection of model > cars > displayed around her room. a on the other hand had her doll > collections. And my niece had a pencil collection. > > I also have to admit that I collect rocks and have for over 20 years. I > have > a rock from everywhere we've been and can tell you which rock is which. I > even have a rock from Gettysburg in my car. I also collect beach sand and > now I > am starting to collect shells. You wouldn't believe what I brought home > from > Miami! only lets me keep them in our upstairs bathroom. He thinks I > am > nuts. Oh well, it doesn't hurt anyone and they make me smile. > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Kim, As always, you describe things so well! Yes, I think it can be a huge challenge and a very thin line indeed... >I do think it is a huge task to figure out how much is simply >their personality and how much is it that there is a raodblock to the development of that personality. Sharon from West Oz >Debby, > >To me one way to tell that it is a neurological issue and not a hobby, is >that it impacts his social skills - going into a dissertation about his >favorite movie and not noticing that others tune out, or only focusing on >the movie and not having connection with people (as his norm). > >All children (people) do pursue their interests, but we learn to stop it (at >least most of the time) when we need to and think about something else like >school or coming to dinner or talking with grandma when she comes to >visit.... I do think our kids can get stuck in a rut where they cannot get >back on track without supports of some kind (sometimes those can be >relaxation techniques, behavioral plans, medicine, alternative therapies or >whatever). > >I am glad he is having a good response to the risperadal. > >Kim L > > > > >> This is interesting to me. I notice 's OCD escalate when not feeling >> well. >> >> Update! He started on Risperdol 3 weeks ago and is doing fantastic. HE >> STARTED EATING! We actually cut the tube feeding in half! It's Amazing. >> >> With the meds, his mood is better and little OCD things are not really there >> anymore, like lights on and off, doors closed etc., only the big ones stay >> and I am wondering if it is OCD at all and not really a TRUE Hobby. He is >> fascinated with movies, he wants to be a director. He wants to go to >> film-making school. I am going to see what kind of classes I can find for >> him. I think the hobby is the movies, and the OCD part is just that he >> can't stop thinking about it because he loves it so much. He really wants >> to do something with making movies when he grows up, it's very interesting. >> >> >> Debbie Matasker mom to w/CHARGE 8.5, 11, andra 6 >> >> >> >> Re: OCD or hobby?? >> >> Yet again the topics on this list are what we are dealing with at the >> moment. >> Patty's OCD's were intense recently but after she had surgery on a torn >> meniscus in her knee they went away. It was so nice. But they came back. >> She >> was really grouchy lately and doing things like slicking her hair back, >> wearing >> hats and picking her fingernails. >> >> Suddenly they became intense. When that happens her OCD interferes with her >> >> life. I couldn't figure out why. Finally I got really concerned because >> she >> was lining up her shoes again. Then she went to get her stitches out. Once >> >> they clipped the stitches all this guck came out and her knee turned bright >> red. It was disgusting. She suddenly had a whopper of an infection. The >> very >> next day she became congested and ended up having the same guck come out of >> her >> ears. She had no fever and little pain-anywhere. But she was sick. That's >> >> the reason for her OCD's this time. Since she's been on antibiotics for a >> few >> days they are minimal once again. I just wish there was a way that her body >> >> would tell her she was ill the way ours do. But that's not ever going to >> happen. We just have to figure it out as they come. UGH. >> >> I must also admit the posts were funny here in other ways. Patty was never >> a >> girlie girl and loved to play cars. She also lined them up, but that was >> her >> play that she did with her father! Patty also had a collection of model >> cars >> displayed around her room. a on the other hand had her doll >> collections. And my niece had a pencil collection. > > >> I also have to admit that I collect rocks and have for over 20 years. I >> have >> a rock from everywhere we've been and can tell you which rock is which. I >> even have a rock from Gettysburg in my car. I also collect beach sand and >> now I >> am starting to collect shells. You wouldn't believe what I brought home >> from >> Miami! only lets me keep them in our upstairs bathroom. He thinks I >> am >> nuts. Oh well, it doesn't hurt anyone and they make me smile. >> >> >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 i get more emotional if im getting a period or the time im supposed to no this isnt illness but its almost the same as pattys isnt it > > Kim, > As always, you describe things so well! Yes, I think it can be a > huge challenge and a very thin line indeed... > > >I do think it is a huge task to figure out how much is simply > >their personality and how much is it that there is a raodblock to the > development of that personality. > > Sharon from West Oz > > > > >Debby, > > > >To me one way to tell that it is a neurological issue and not a hobby, is > >that it impacts his social skills - going into a dissertation about his > >favorite movie and not noticing that others tune out, or only focusing on > >the movie and not having connection with people (as his norm). > > > >All children (people) do pursue their interests, but we learn to stop it > (at > >least most of the time) when we need to and think about something else > like > >school or coming to dinner or talking with grandma when she comes to > >visit.... I do think our kids can get stuck in a rut where they cannot > get > >back on track without supports of some kind (sometimes those can be > >relaxation techniques, behavioral plans, medicine, alternative therapies > or > >whatever). > > > >I am glad he is having a good response to the risperadal. > > > >Kim L > > > > > > > > > >> This is interesting to me. I notice 's OCD escalate when not > feeling > >> well. > >> > >> Update! He started on Risperdol 3 weeks ago and is doing > fantastic. HE > >> STARTED EATING! We actually cut the tube feeding in half! It's > Amazing. > >> > >> With the meds, his mood is better and little OCD things are not really > there > >> anymore, like lights on and off, doors closed etc., only the big ones > stay > >> and I am wondering if it is OCD at all and not really a TRUE > Hobby. He is > >> fascinated with movies, he wants to be a director. He wants to go to > >> film-making school. I am going to see what kind of classes I can find > for > >> him. I think the hobby is the movies, and the OCD part is just that > he > >> can't stop thinking about it because he loves it so much. He really > wants > >> to do something with making movies when he grows up, it's very > interesting. > >> > >> > >> Debbie Matasker mom to w/CHARGE 8.5, 11, andra 6 > >> > >> > >> > >> Re: OCD or hobby?? > >> > >> Yet again the topics on this list are what we are dealing with at the > >> moment. > >> Patty's OCD's were intense recently but after she had surgery on a > torn > >> meniscus in her knee they went away. It was so nice. But they came > back. > >> She > >> was really grouchy lately and doing things like slicking her hair > back, > >> wearing > >> hats and picking her fingernails. > >> > >> Suddenly they became intense. When that happens her OCD interferes > with her > >> > >> life. I couldn't figure out why. Finally I got really concerned > because > >> she > >> was lining up her shoes again. Then she went to get her stitches > out. Once > >> > >> they clipped the stitches all this guck came out and her knee turned > bright > >> red. It was disgusting. She suddenly had a whopper of an > infection. The > >> very > >> next day she became congested and ended up having the same guck come > out of > >> her > >> ears. She had no fever and little pain-anywhere. But she was > sick. That's > >> > >> the reason for her OCD's this time. Since she's been on antibiotics > for a > >> few > >> days they are minimal once again. I just wish there was a way that > her body > >> > >> would tell her she was ill the way ours do. But that's not ever going > to > >> happen. We just have to figure it out as they come. UGH. > >> > >> I must also admit the posts were funny here in other ways. Patty was > never > >> a > >> girlie girl and loved to play cars. She also lined them up, but that > was > >> her > >> play that she did with her father! Patty also had a collection of > model > >> cars > >> displayed around her room. a on the other hand had her doll > >> collections. And my niece had a pencil collection. > > > > >> I also have to admit that I collect rocks and have for over 20 > years. I > >> have > >> a rock from everywhere we've been and can tell you which rock is > which. I > >> even have a rock from Gettysburg in my car. I also collect beach sand > and > >> now I > >> am starting to collect shells. You wouldn't believe what I brought > home > >> from > >> Miami! only lets me keep them in our upstairs bathroom. He > thinks I > >> am > >> nuts. Oh well, it doesn't hurt anyone and they make me smile. > >> > >> > >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 debie cool > > i get more emotional if im getting a period or the time im supposed to no > this isnt illness but its almost the same as pattys isnt it > > > > > > Kim, > > As always, you describe things so well! Yes, I think it can be a > > huge challenge and a very thin line indeed... > > > > >I do think it is a huge task to figure out how much is simply > > >their personality and how much is it that there is a raodblock to the > > development of that personality. > > > > Sharon from West Oz > > > > > > > > >Debby, > > > > > >To me one way to tell that it is a neurological issue and not a hobby, > > is > > >that it impacts his social skills - going into a dissertation about his > > >favorite movie and not noticing that others tune out, or only focusing > > on > > >the movie and not having connection with people (as his norm). > > > > > >All children (people) do pursue their interests, but we learn to stop > > it (at > > >least most of the time) when we need to and think about something else > > like > > >school or coming to dinner or talking with grandma when she comes to > > >visit.... I do think our kids can get stuck in a rut where they cannot > > get > > >back on track without supports of some kind (sometimes those can be > > >relaxation techniques, behavioral plans, medicine, alternative > > therapies or > > >whatever). > > > > > >I am glad he is having a good response to the risperadal. > > > > > >Kim L > > > > > > > > > > > > > > >> This is interesting to me. I notice 's OCD escalate when not > > feeling > > >> well. > > >> > > >> Update! He started on Risperdol 3 weeks ago and is doing > > fantastic. HE > > >> STARTED EATING! We actually cut the tube feeding in half! It's > > Amazing. > > >> > > >> With the meds, his mood is better and little OCD things are not > > really there > > >> anymore, like lights on and off, doors closed etc., only the big > > ones stay > > >> and I am wondering if it is OCD at all and not really a TRUE > > Hobby. He is > > >> fascinated with movies, he wants to be a director. He wants to go > > to > > >> film-making school. I am going to see what kind of classes I can > > find for > > >> him. I think the hobby is the movies, and the OCD part is just that > > he > > >> can't stop thinking about it because he loves it so much. He > > really wants > > >> to do something with making movies when he grows up, it's very > > interesting. > > >> > > >> > > >> Debbie Matasker mom to w/CHARGE 8.5, 11, andra 6 > > >> > > >> > > >> > > >> Re: OCD or hobby?? > > >> > > >> Yet again the topics on this list are what we are dealing with at > > the > > >> moment. > > >> Patty's OCD's were intense recently but after she had surgery on a > > torn > > >> meniscus in her knee they went away. It was so nice. But they came > > back. > > >> She > > >> was really grouchy lately and doing things like slicking her hair > > back, > > >> wearing > > >> hats and picking her fingernails. > > >> > > >> Suddenly they became intense. When that happens her OCD interferes > > with her > > >> > > >> life. I couldn't figure out why. Finally I got really concerned > > because > > >> she > > >> was lining up her shoes again. Then she went to get her stitches > > out. Once > > >> > > >> they clipped the stitches all this guck came out and her knee turned > > bright > > >> red. It was disgusting. She suddenly had a whopper of an > > infection. The > > >> very > > >> next day she became congested and ended up having the same guck come > > out of > > >> her > > >> ears. She had no fever and little pain-anywhere. But she was > > sick. That's > > >> > > >> the reason for her OCD's this time. Since she's been on antibiotics > > for a > > >> few > > >> days they are minimal once again. I just wish there was a way that > > her body > > >> > > >> would tell her she was ill the way ours do. But that's not ever > > going to > > >> happen. We just have to figure it out as they come. UGH. > > >> > > >> I must also admit the posts were funny here in other ways. Patty > > was never > > >> a > > >> girlie girl and loved to play cars. She also lined them up, but > > that was > > >> her > > >> play that she did with her father! Patty also had a collection of > > model > > >> cars > > >> displayed around her room. a on the other hand had her doll > > >> collections. And my niece had a pencil collection. > > > > > > >> I also have to admit that I collect rocks and have for over 20 > > years. I > > >> have > > >> a rock from everywhere we've been and can tell you which rock is > > which. I > > >> even have a rock from Gettysburg in my car. I also collect beach > > sand and > > >> now I > > >> am starting to collect shells. You wouldn't believe what I brought > > home > > >> from > > >> Miami! only lets me keep them in our upstairs bathroom. He > > thinks I > > >> am > > >> nuts. Oh well, it doesn't hurt anyone and they make me smile. > > >> > > >> > > >> Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Kim, You said it perfectly! Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 so glad michael is eating maria Re: OCD or hobby?? > Debbie, > > Wow, I am so happy for you and for . > > Patty has been on Riperdal since she was around 12 and I swear it has been > what has let her function in this world wonderfully. Sure she goes to > therapy, > we watch her health, we understand her stresses, we modify for her > disability, > we do, we do, we do, (or try to) but even with all that she just wouldn't > be > able to live without her medications. I do have to warn you that as she > grew > we had to change the dosages here and there. Sometimes we lessened it, > sometimes we increased it. There were also times that we had to add > another > medication, quanfacine because her tics had increased. But that > medication was > diminished years ago. > > We recently tried to diminish the Risperdal but so far she hasn't been > able > to do that. Her tics come back and her OCD is worse. We'll try again as > life > becomes easier for her. We'll see. > > We also started a med, celexa, for anxiety about a year ago. It was like > she > was a flower opening even more beautiful than she already is. > > I understand what you mean about the OCD and the hobby. It is the > thinking > and thinking part that can get Patty in a fix. But if his hobby is > something > he loves you can reduce the stress of the OCD part and turn it into > something > good, like a career one day. > > I am so happy to hear of starting to eat. It could just be a > coincidence, but it could also be that he is calm enough to be able to > accept the > physical and emotional process of it all. > > Great news all around. He must be so proud! > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Thanks , 9 years in the making! Re: OCD or hobby?? so glad michael is eating maria Re: OCD or hobby?? > Debbie, > > Wow, I am so happy for you and for . > > Patty has been on Riperdal since she was around 12 and I swear it has been > what has let her function in this world wonderfully. Sure she goes to > therapy, > we watch her health, we understand her stresses, we modify for her > disability, > we do, we do, we do, (or try to) but even with all that she just wouldn't > be > able to live without her medications. I do have to warn you that as she > grew > we had to change the dosages here and there. Sometimes we lessened it, > sometimes we increased it. There were also times that we had to add > another > medication, quanfacine because her tics had increased. But that > medication was > diminished years ago. > > We recently tried to diminish the Risperdal but so far she hasn't been > able > to do that. Her tics come back and her OCD is worse. We'll try again as > life > becomes easier for her. We'll see. > > We also started a med, celexa, for anxiety about a year ago. It was like > she > was a flower opening even more beautiful than she already is. > > I understand what you mean about the OCD and the hobby. It is the > thinking > and thinking part that can get Patty in a fix. But if his hobby is > something > he loves you can reduce the stress of the OCD part and turn it into > something > good, like a career one day. > > I am so happy to hear of starting to eat. It could just be a > coincidence, but it could also be that he is calm enough to be able to > accept the > physical and emotional process of it all. > > Great news all around. He must be so proud! > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 bonnie i collect sea shells to id of been right in the sand collecting rocks and shells with u xxxxxx > > Thanks , 9 years in the making! > > Re: OCD or hobby?? > > so glad michael is eating > > maria > Re: OCD or hobby?? > > > > Debbie, > > > > Wow, I am so happy for you and for . > > > > Patty has been on Riperdal since she was around 12 and I swear it has > been > > what has let her function in this world wonderfully. Sure she goes to > > therapy, > > we watch her health, we understand her stresses, we modify for her > > disability, > > we do, we do, we do, (or try to) but even with all that she just > wouldn't > > be > > able to live without her medications. I do have to warn you that as she > > grew > > we had to change the dosages here and there. Sometimes we lessened it, > > sometimes we increased it. There were also times that we had to add > > another > > medication, quanfacine because her tics had increased. But that > > medication was > > diminished years ago. > > > > We recently tried to diminish the Risperdal but so far she hasn't been > > able > > to do that. Her tics come back and her OCD is worse. We'll try again > as > > life > > becomes easier for her. We'll see. > > > > We also started a med, celexa, for anxiety about a year ago. It was > like > > she > > was a flower opening even more beautiful than she already is. > > > > I understand what you mean about the OCD and the hobby. It is the > > thinking > > and thinking part that can get Patty in a fix. But if his hobby is > > something > > he loves you can reduce the stress of the OCD part and turn it into > > something > > good, like a career one day. > > > > I am so happy to hear of starting to eat. It could just be a > > coincidence, but it could also be that he is calm enough to be able to > > accept the > > physical and emotional process of it all. > > > > Great news all around. He must be so proud! > > > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Michele, I don't know if this is on target or not but have decided to share. There have been times over the years when 's OCD was simply out of sight. Now, it seems to me that things are much different. I'm ready to swear that it goes up with - as usual - ear pain - but also when she has to have a bm. I'm charting this, and it's really something. As soon as she goes, she laughs and is more-or-less fine. The pre-bm period, alas, also seems to have included a truly horrid mood 2 x's since she's been home. I'm not suggesting bowel issues at all in your case, but I am now convinced that certain things simply cause the OCD to surface. My suspicion is that we need to find a way for to tell us about this. She'll do it in writing with Andy and me but with no others... Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Martha, Dylan's state cycles and BM cycles are definitely correlated. But how the nervous system provides information to the bowels seems to be impacted as well. It is like his nervous system responds in a way that shuts down everything, including the bowels when he is off, and he has diarrhea when he is frantic, and he is pretty even in mood and BMS when he is on, except for some " laugh attacks " when he actually goes. Kim > Michele, I don't know if this is on target or not but have decided to share. > There have been times over the years when 's OCD was simply out > of sight. Now, it seems to me that things are much different. I'm ready to > swear that it goes up with - as usual - ear pain - but also when she has to > have a bm. I'm charting this, and it's really something. As soon as she > goes, she laughs and is more-or-less fine. The pre-bm period, alas, also > seems to have included a truly horrid mood 2 x's since she's been home. > I'm not suggesting bowel issues at all in your case, but I am now > convinced that certain things simply cause the OCD to surface. My > suspicion is that we need to find a way for to tell us about this. > She'll > do it in writing with Andy and me but with no others... > Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Martha- Good job in making sense of 's stuff. It's really something trying to get inside someone else's head! We actually have an appt on Feb 27 with a pediatric neurodevelopmental psych in the Chicago area. She sounds awesome - -was recommended by a colleague in the ARC of Il. I am very hopeful that she will help us understand and manage these things. I'm seeing Aubrie's class work continue to suffer. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ RE: Re: OCD or hobby?? Michele, I don't know if this is on target or not but have decided to share. There have been times over the years when 's OCD was simply out of sight. Now, it seems to me that things are much different. I'm ready to swear that it goes up with - as usual - ear pain - but also when she has to have a bm. I'm charting this, and it's really something. As soon as she goes, she laughs and is more-or-less fine. The pre-bm period, alas, also seems to have included a truly horrid mood 2 x's since she's been home. I'm not suggesting bowel issues at all in your case, but I am now convinced that certain things simply cause the OCD to surface. My suspicion is that we need to find a way for to tell us about this. She'll do it in writing with Andy and me but with no others... Martha Quote Link to comment Share on other sites More sharing options...
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