Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 ,    Read the following website that discusses magnesium deficiency related to anxiety, OCD etc.  www.magnesiumforlife.com To: Sent: Sunday, November 13, 2011 10:18 PM Subject: Newly dx 8 year old.  Hi Everyone, I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. So I guess my questions are: -Do you agree this is OCD and not a tic? -What should we do about it? -Should we ignore it or try to discourage it? -Do you think this was triggered by ADHD stimulant medication? I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. Oh, and we did have her tested for PANDAS. The test results, we were told, were negative. ANTI-streptomycin results : 464 DnASE D antibody : 255 Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 ,    Read the following website that discusses magnesium deficiency related to anxiety, OCD etc.  www.magnesiumforlife.com To: Sent: Sunday, November 13, 2011 10:18 PM Subject: Newly dx 8 year old.  Hi Everyone, I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. So I guess my questions are: -Do you agree this is OCD and not a tic? -What should we do about it? -Should we ignore it or try to discourage it? -Do you think this was triggered by ADHD stimulant medication? I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. Oh, and we did have her tested for PANDAS. The test results, we were told, were negative. ANTI-streptomycin results : 464 DnASE D antibody : 255 Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 ,    Read the following website that discusses magnesium deficiency related to anxiety, OCD etc.  www.magnesiumforlife.com To: Sent: Sunday, November 13, 2011 10:18 PM Subject: Newly dx 8 year old.  Hi Everyone, I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. So I guess my questions are: -Do you agree this is OCD and not a tic? -What should we do about it? -Should we ignore it or try to discourage it? -Do you think this was triggered by ADHD stimulant medication? I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. Oh, and we did have her tested for PANDAS. The test results, we were told, were negative. ANTI-streptomycin results : 464 DnASE D antibody : 255 Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 My daughter had a lot of these same issues. She was also dx initially at 6 years old. First, with ocd and then with a tic disorder. We have never really been able to figure out what is exactly a tic and what is ocd related. She takes guanfacine and zoloft. She is now 14 years old, and although she still has some anxiety, is tic free and mainly ocd free. She has done therapy on and off through the years, but the medicine combination seemed to be most helpful to her. Have you tried meds for ocd? As we understand it, sometimes the tics and the ocd urges are so similar, and hard to differentiate. My daughter never took adhd meds, so that was not a factor for us. As I'm sure you know, ocd and tic disorders often go hand in hand. We were told that the tics often get better as the person gets older, and this is what we have experienced. We ignored the tics as much as possible, although it was often times very frustrating to be around. Once we got both these meds working together, the tics or tic like behaviors dropped drastically, and were much more manageable. > Hi Everyone, > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > So I guess my questions are: > -Do you agree this is OCD and not a tic? > -What should we do about it? > -Should we ignore it or try to discourage it? > -Do you think this was triggered by ADHD stimulant medication? > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > Oh, and we did have her tested for PANDAS. > The test results, we were told, were negative. > > ANTI-streptomycin results : 464 > DnASE D antibody : 255 > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 My daughter had a lot of these same issues. She was also dx initially at 6 years old. First, with ocd and then with a tic disorder. We have never really been able to figure out what is exactly a tic and what is ocd related. She takes guanfacine and zoloft. She is now 14 years old, and although she still has some anxiety, is tic free and mainly ocd free. She has done therapy on and off through the years, but the medicine combination seemed to be most helpful to her. Have you tried meds for ocd? As we understand it, sometimes the tics and the ocd urges are so similar, and hard to differentiate. My daughter never took adhd meds, so that was not a factor for us. As I'm sure you know, ocd and tic disorders often go hand in hand. We were told that the tics often get better as the person gets older, and this is what we have experienced. We ignored the tics as much as possible, although it was often times very frustrating to be around. Once we got both these meds working together, the tics or tic like behaviors dropped drastically, and were much more manageable. > Hi Everyone, > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > So I guess my questions are: > -Do you agree this is OCD and not a tic? > -What should we do about it? > -Should we ignore it or try to discourage it? > -Do you think this was triggered by ADHD stimulant medication? > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > Oh, and we did have her tested for PANDAS. > The test results, we were told, were negative. > > ANTI-streptomycin results : 464 > DnASE D antibody : 255 > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 My daughter had a lot of these same issues. She was also dx initially at 6 years old. First, with ocd and then with a tic disorder. We have never really been able to figure out what is exactly a tic and what is ocd related. She takes guanfacine and zoloft. She is now 14 years old, and although she still has some anxiety, is tic free and mainly ocd free. She has done therapy on and off through the years, but the medicine combination seemed to be most helpful to her. Have you tried meds for ocd? As we understand it, sometimes the tics and the ocd urges are so similar, and hard to differentiate. My daughter never took adhd meds, so that was not a factor for us. As I'm sure you know, ocd and tic disorders often go hand in hand. We were told that the tics often get better as the person gets older, and this is what we have experienced. We ignored the tics as much as possible, although it was often times very frustrating to be around. Once we got both these meds working together, the tics or tic like behaviors dropped drastically, and were much more manageable. > Hi Everyone, > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > So I guess my questions are: > -Do you agree this is OCD and not a tic? > -What should we do about it? > -Should we ignore it or try to discourage it? > -Do you think this was triggered by ADHD stimulant medication? > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > Oh, and we did have her tested for PANDAS. > The test results, we were told, were negative. > > ANTI-streptomycin results : 464 > DnASE D antibody : 255 > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 It sure sounds like OCD - regarding the ADHD Meds - my son's Dr. advised against him taking the ADHD meds - because they can increase anxiety = not good for a OCD kid. But I doubt the medicine caused OCD. My son had the best results with Luvox. Every person is differnet ofcourse. The meds & CBT are the best combination - I bet when the OCD comes under control -so will the tics....Keep us posted > > > Hi Everyone, > > > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > > So I guess my questions are: > > -Do you agree this is OCD and not a tic? > > -What should we do about it? > > -Should we ignore it or try to discourage it? > > -Do you think this was triggered by ADHD stimulant medication? > > > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > > > Oh, and we did have her tested for PANDAS. > > The test results, we were told, were negative. > > > > ANTI-streptomycin results : 464 > > DnASE D antibody : 255 > > > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 It sure sounds like OCD - regarding the ADHD Meds - my son's Dr. advised against him taking the ADHD meds - because they can increase anxiety = not good for a OCD kid. But I doubt the medicine caused OCD. My son had the best results with Luvox. Every person is differnet ofcourse. The meds & CBT are the best combination - I bet when the OCD comes under control -so will the tics....Keep us posted > > > Hi Everyone, > > > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > > So I guess my questions are: > > -Do you agree this is OCD and not a tic? > > -What should we do about it? > > -Should we ignore it or try to discourage it? > > -Do you think this was triggered by ADHD stimulant medication? > > > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > > > Oh, and we did have her tested for PANDAS. > > The test results, we were told, were negative. > > > > ANTI-streptomycin results : 464 > > DnASE D antibody : 255 > > > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 It sure sounds like OCD - regarding the ADHD Meds - my son's Dr. advised against him taking the ADHD meds - because they can increase anxiety = not good for a OCD kid. But I doubt the medicine caused OCD. My son had the best results with Luvox. Every person is differnet ofcourse. The meds & CBT are the best combination - I bet when the OCD comes under control -so will the tics....Keep us posted > > > Hi Everyone, > > > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > > So I guess my questions are: > > -Do you agree this is OCD and not a tic? > > -What should we do about it? > > -Should we ignore it or try to discourage it? > > -Do you think this was triggered by ADHD stimulant medication? > > > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > > > Oh, and we did have her tested for PANDAS. > > The test results, we were told, were negative. > > > > ANTI-streptomycin results : 464 > > DnASE D antibody : 255 > > > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Hi Nanci, welcome! I know with my own son (now 22) when his OCD began in 6th grade, there were some things I wondered about as possible tics. It was hard to figure out the *why* of some things he did and, from what I've read, they can get sort of similar feelings with tics. But as his OCD improved, so did those suspect tics. I'm wondering if you'd like me to take this introductory post you did and send it to Dr. Geller (who advises our group) since he deals with medication questions. I can do this without your doing a " Ask Dr. Geller " post. Let me know, and again, welcome! (Co-Moderator) single mom, 3 sons , 22, with OCD, dysgraphia, Aspergers > > Hi Everyone, > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Welcome to the group, Nanci. It sounds like " just right " OCD, needing things to be symmetrical. Our son dealt with a lot of things like that. He would bump one side and have to turn around the bump the other to make it feel even. That she says it feels like an emergency, if she tries to stop, makes me think she is feeling anxiety about it. Our son used to describe it as having a " worry feeling " when he was young. You can have tics with OCD, but medication can also bring on tics, in some cases. Did she start doing this with her mouth just since she started medication, or did she also do that when she was medication free? Are there any other doctors in your area that use CBT/ERP for OCD, that you could try? You need to determine if the mouth movement is a tic or a ritual. A psychologist who specializes in the treatment of OCD, using ERP (exposure and response prevention) would be able to help you figure it out. With a tic, there is not " thought " attached to it. With a ritual, there is a thought that is driving her to react, by doing the ritual, to try to make the anxious thought stop. There are also workbooks that can walk you through CBT/ERP. We have some listed in our files. One of our favs was Talking Back to OCD by March. But, there are others targeted for young kids that you can read with her that might help too. Glad you found us. BJ > > Hi Everyone, > > I am new to this forum, and I hope I am posting appropriately and in the right place. I apologize if this gets long. I am hoping for advice and shared experiences, as this is all new to us. > > My daughter is a very complex kid, she has had a litany of dx in her short 8 years, but at age 6, we felt we had an excellent evaluation that really hit the nail on the head and dx her combination type ADHD. We chose to medicate and my daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend and summer drug vacations. It was a wonder drug for her, very few side effects, and great results - she was a different kid. In September 2011, we started the medication again in preparation for the school year. After about two weeks we noticed a mouth twitch. We thought it was a tic and ended up stopping the medication, hoping the tic would go away. It didn't. We started Intuniv (guanfacine) hoping it would help both the tic and the ADHD symptoms. (It hasn't) We also started to see and notice other behaviors. I.E. rubbing feet & hands together, playing with hair, touching teeth, walking in circles, not stepping on cracks (this we had seen previously, but had gone away on its own a year earlier), cracking knuckles, sort of clicking her feet together as she walks, and finally, touching both sides of her body. For example, if she touches her right knee, she will then touch her left knee. If she bumps the right side of her mouth with her spoon, she needs to touch the left side. Her main symptom, though, is her mouth. She sort of sucks in air and moves her jaw around. It's a very unnerving, pretty constant habit. > > She is very articulate about it all. She explains that she doesn't know how or why it started, but that she needs to do all of those things or else her body doesn't feel equal. She also realizes that it is silly, says she can't control it, and that if she tries to stop it or hold off for awhile it " starts to feel like an emergency " . > > We now believe this is OCD rather than a tic, and despite medication (taking 1 mg Intuniv, and 10 mg Celexa) it seems to be getting worse. > So I guess my questions are: > -Do you agree this is OCD and not a tic? > -What should we do about it? > -Should we ignore it or try to discourage it? > -Do you think this was triggered by ADHD stimulant medication? > > I'm just so frustrated and want to fix this for my daughter. She is not a typically anxious child, and only says she feels anxious that people are going to see her " mouth thing " and think that she is weird. > > Any advice or information would be great. We are seeing a great Integrative, Developmental pediatrician. He has recommended CBT therapy, but his office isn't taking new clients for that. We are going to see him again on Tuesday and hopefully he will have someone else to recommend. Hard to believe this has been going on for two months and we haven't made any progress! Rather, it seems things are getting worse. > > Oh, and we did have her tested for PANDAS. > The test results, we were told, were negative. > > ANTI-streptomycin results : 464 > DnASE D antibody : 255 > > Where do we go from here? Is this going to be permanant? Thanks so much if you've made it this far, Nanci > Quote Link to comment Share on other sites More sharing options...
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