Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Hi , Welcome back to the list. There is a brand new list for chargers who have cochlear implants or are considering implants, so I'm sure the listowner of that list will send you the information. That would be an excellent place to ask questions. It just started this Spring. I think the hair pulling can be related to stress reactions and I suspect there are medications that can help with this one. My daughter has been on an antidepressant medications which has helped her tremendously with behaviors that are of the obsessive nature. But she started the medicine when she was older. She may be just about ready to wean off of it now. It can be hard to find reasons why someone may have this kind of reaction and while I think sometimes there are clear reasons such as difficulty with communication or other factors, sometimes I believe it is truly a biochemical imbalance that exists and needs correction. I don't think we yet have all the necessary information to know exactly what is going on and what the best ways to treat it are. I would suspect that relaxation techniques could be very helpful. It's kind of hard to ask a 2 year old to relax, so maybe some of the sensory integration exercises could help. Massage might also be a relaxing activity. We are in Southern California but there are several CHARGERs in Northern California. Casey, the listowner is not terribly far from Sacramento, Jackie Kenley is in San Francisco and Kim who is the Mom of Saleah is also in the area. Suter is in Northern California as well. Best luck connecting with them or others who are near Sacramento. Eileen Valentine is the sweetest name. How is she doing? How is her communication now?? Mom to Kendra, 15, CHARGE, , 21 and Camille, 24 Southern California At 03:48 AM 5/30/02 +0000, you wrote: >Hi Everyone, > I have not been on in a while. My name is and my daughter >is Eileen Valentine and we used to live in Knoxville, TN and we now >live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >anyone have a problem with their child pulling their hair out. >Eileen now has a blad spot on the top of her head because of this and >I don't know what to do. I also am wondering does any of the CHARGE >kids have a coclear implant? Eileen is profound in both ears and >gets no benefit from aids so I thought about it but I am just not >sure. I think there are a lot of people out there that want her to >get and they want to use her as a guinny pig. Are there any families >in the Sacramento area with Charge kids? I would really like to meet >other families with our beautiful children. If there is anyone out >there that can give me advise I sure could use it before she has no >hair left! If there is anyone here that needs a tupperware >consultant you can visit my website at >www.my.tupperware.com/tracyvalentine , this has let me stay home so I >could spend and take care of my family. Thank you for any advise you >can give me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 , What do you mean pull their hair out? Is it done in frustration and anger, pulling at clumps? Or is it sitting there and pulling hair out bit by bit? Patty did the bit by bit when she was around five. That is why we discovered her OCD. She had this huge bald spot right down the center of her head. Every time we saw her do it we told her to put her hands down. We often then gave her something else to do. We found giving her hands different textures helped sometimes. That is the time I found about putting different items into a balloon, like rice, corn starch, beans. If she was really bad I had to sit there with her till we stopped. When that happened we would play a game in having her tell me what she thought was in each balloon. When she was doing it we could not yell or startle her or it made her worse. Oh, and having her help me with dinner worked too. She loved kneading dough, stirring, pouring and washing the dishes. I don't know if any of this helps. I hope so. Good luck on the implant. I hope you find someone to help. There a few here who can I am sure. Take care and nice to have you back. Bonnie, Mom to Kris 19, Patty CHARGE 17 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Eileen will be just sitting there at times and pull her hair and there are times to where she will get mad and pull her hair as well. I pull her hands down and give her something to play with and I try to distract her. Eileen communicates pretty good through signing even though she is only 2 so I don't think it is a communication problem with her. She also picks at things a lot and she bites her nail too. How do I find out about OCD? Thanks, Valentine, Eileen CHARgE 2Years old June 18, YEAH!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 At one point Dylan was diagnosed by the dermatologist as having a condition where the hair does not have roots, so you barely touch it and it falls out. You definitely did not have to pull hard to have a whole clump come off the top of his head. I feel this was structural - he had a very severe torticolis from not moving in utero, so that his left shoulder and neck remained tight for years, impacting his ability to crawl, hold his head up etc... He started receiving cranial sacral therapy at age 2, and this hair problem stopped. Kim Mom to Dylan 5, Kayla 11, Tyler 14, wife to Roy ---------- >From: Turk22082@... >To: CHARGE >Subject: Re: HELP! >Date: Thu, May 30, 2002, 3:21 AM > > , > > What do you mean pull their hair out? Is it done in frustration and > anger, pulling at clumps? Or is it sitting there and pulling hair out bit by > bit? Patty did the bit by bit when she was around five. That is why we > discovered her OCD. She had this huge bald spot right down the center of her > head. Every time we saw her do it we told her to put her hands down. We > often then gave her something else to do. We found giving her hands > different textures helped sometimes. That is the time I found about putting > different items into a balloon, like rice, corn starch, beans. If she was > really bad I had to sit there with her till we stopped. When that happened we > would play a game in having her tell me what she thought was in each balloon. > When she was doing it we could not yell or startle her or it made her worse. > Oh, and having her help me with dinner worked too. She loved kneading > dough, stirring, pouring and washing the dishes. I don't know if any of this > helps. I hope so. > Good luck on the implant. I hope you find someone to help. There > a few here who can I am sure. Take care and nice to have you back. > > Bonnie, Mom to Kris 19, Patty CHARGE 17 and wife to > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Traci, I think there are a fair number of children with CHARGE who have Cochlear Implants. From what I hear, the anatomies seem to be different when the docs get inside and the surgery ends up taking longer as things need to get re-routed in a different manner sometimes. I know a child with CHARGE personally who has a C.I. and she is definitely benefitting from it. It's an intensely difficult personal decision and I wish you the best of luck in making it. Re: the hair pulling...our Kennedy used to do this quite a bit, and in the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT reminding or putting her hands down or especially getting her doing something else, busy beads, play dough, keys, whatever we could give her to distract her to something else. Now, we are finding it is the thumb sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the point of it just breaking off at the ends. The only solution for that has been hair up in pig tails every day, then she only twirls her bangs, which are short and can't knot up as badly. So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good luck, it is very difficult to deal with any kind of self abusing behaviour. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 HELP! Hi Everyone, I have not been on in a while. My name is and my daughter is Eileen Valentine and we used to live in Knoxville, TN and we now live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does anyone have a problem with their child pulling their hair out. Eileen now has a blad spot on the top of her head because of this and I don't know what to do. I also am wondering does any of the CHARGE kids have a coclear implant? Eileen is profound in both ears and gets no benefit from aids so I thought about it but I am just not sure. I think there are a lot of people out there that want her to get and they want to use her as a guinny pig. Are there any families in the Sacramento area with Charge kids? I would really like to meet other families with our beautiful children. If there is anyone out there that can give me advise I sure could use it before she has no hair left! If there is anyone here that needs a tupperware consultant you can visit my website at www.my.tupperware.com/tracyvalentine , this has let me stay home so I could spend and take care of my family. Thank you for any advise you can give me. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Our began having periods of pulling her hair out several years ago; it recurs periodically. There's even a formal psychiatric term for the behavior! When nothing else we tried was successful, her teacher at Perkins suggested a really, really short hair cut - that worked instantly. So, each time we see the hair pulling just starting, it's to the beauty parlor we go. I'm amazed that other kids do this --- I'd never heard of it before . Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her hands though and can't sit still when she is excited or wants to tell a story (sigh). Her teacher has taught her to put her hands in her lap, and that has helped a bit! Regards, Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion kindergarten in 3 weeks!) Graeme & Weir wrote: > Traci, > I think there are a fair number of children with CHARGE who have Cochlear Implants. From what I hear, the anatomies seem to be different when the docs get inside and the surgery ends up taking longer as things need to get re-routed in a different manner sometimes. I know a child with CHARGE personally who has a C.I. and she is definitely benefitting from it. It's an intensely difficult personal decision and I wish you the best of luck in making it. > Re: the hair pulling...our Kennedy used to do this quite a bit, and in the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT reminding or putting her hands down or especially getting her doing something else, busy beads, play dough, keys, whatever we could give her to distract her to something else. Now, we are finding it is the thumb sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the point of it just breaking off at the ends. The only solution for that has been hair up in pig tails every day, then she only twirls her bangs, which are short and can't knot up as badly. > > So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good luck, it is very difficult to deal with any kind of self abusing behaviour. > ~ Weir > Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme > New Brunswick, Canada > Visit the Weir Website: http://personal.nbnet.nb.ca/gweir > ICQ# 1426476 > > HELP! > > Hi Everyone, > I have not been on in a while. My name is and my daughter > is Eileen Valentine and we used to live in Knoxville, TN and we now > live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does > anyone have a problem with their child pulling their hair out. > Eileen now has a blad spot on the top of her head because of this and > I don't know what to do. I also am wondering does any of the CHARGE > kids have a coclear implant? Eileen is profound in both ears and > gets no benefit from aids so I thought about it but I am just not > sure. I think there are a lot of people out there that want her to > get and they want to use her as a guinny pig. Are there any families > in the Sacramento area with Charge kids? I would really like to meet > other families with our beautiful children. If there is anyone out > there that can give me advise I sure could use it before she has no > hair left! If there is anyone here that needs a tupperware > consultant you can visit my website at > www.my.tupperware.com/tracyvalentine , this has let me stay home so I > could spend and take care of my family. Thank you for any advise you > can give me. > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Anne, You know, I tend to wave my hands when I talk. I have started sitting on my hands! LOL Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Anne, You know, I tend to wave my hands when I talk. I have started sitting on my hands! LOL Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Anne, You know, I tend to wave my hands when I talk. I have started sitting on my hands! LOL Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Anne, Actually, I've come close to hitting people! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Anne, Actually, I've come close to hitting people! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Anne, Actually, I've come close to hitting people! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Janet, But do you look as if you're about to take off in flight??? :-) Anne JPM4189@... wrote: > Anne, > > You know, I tend to wave my hands when I talk. I have started sitting on my > hands! LOL > > Janet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Janet, But do you look as if you're about to take off in flight??? :-) Anne JPM4189@... wrote: > Anne, > > You know, I tend to wave my hands when I talk. I have started sitting on my > hands! LOL > > Janet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Janet, But do you look as if you're about to take off in flight??? :-) Anne JPM4189@... wrote: > Anne, > > You know, I tend to wave my hands when I talk. I have started sitting on my > hands! LOL > > Janet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I'm not Janet nor do I have her patience nor absolute gift as a mother and foster mom, (or her handflapping ;-) attribute for that matter), but I love your comment Anne. At 08:37 PM 5/31/02 -0400, you wrote: >Janet, > >But do you look as if you're about to take off in flight??? > >:-) > >Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I'm not Janet nor do I have her patience nor absolute gift as a mother and foster mom, (or her handflapping ;-) attribute for that matter), but I love your comment Anne. At 08:37 PM 5/31/02 -0400, you wrote: >Janet, > >But do you look as if you're about to take off in flight??? > >:-) > >Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I'm not Janet nor do I have her patience nor absolute gift as a mother and foster mom, (or her handflapping ;-) attribute for that matter), but I love your comment Anne. At 08:37 PM 5/31/02 -0400, you wrote: >Janet, > >But do you look as if you're about to take off in flight??? > >:-) > >Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi , We missed you in Indy. I am looking forward to the Cleveland conference. Penina has grown so much over the last year - who knows what she'll be like in 2003? Kindergarten has been wonderful, and we were lucky enough to get Penina into the after school daycare program which is run by educators (not baby-sitters). On a recent pedagogical day, the daycare took the kids to a real mine. Penina wore a miner's helmet and climbed up a vertical ladder and collected rock samples etc. She had a ball. Most of the time she amazes me with all the things she CAN do, so that I almost forget about all the cannots. And I sometime ignore Penina's mannerisms because that's just who she is... But at times such as the Indy conference when we walked into a room full of children with CHARGE, I am shocked at how much she resembles the others.... What I thought was Penina's individuality could very well be lumped together with other CHARGE behaviours. I think that's why the listserv, the foundation and the conferences are very important to us. This connection is so valuable! Not only for coping strategies, but also the essential understanding - " I know what you're going through " . After all, how can you explain hand-flapping to outsiders?! Best, Anne, mom of Penina (CHArgE, almost 5 years and 10 months old) Keedy wrote: > I'm not Janet nor do I have her patience nor absolute gift as a mother and > foster mom, (or her handflapping ;-) attribute for that matter), but I love > your comment Anne. > > At 08:37 PM 5/31/02 -0400, you wrote: > >Janet, > > > >But do you look as if you're about to take off in flight??? > > > >:-) > > > >Anne > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi , We missed you in Indy. I am looking forward to the Cleveland conference. Penina has grown so much over the last year - who knows what she'll be like in 2003? Kindergarten has been wonderful, and we were lucky enough to get Penina into the after school daycare program which is run by educators (not baby-sitters). On a recent pedagogical day, the daycare took the kids to a real mine. Penina wore a miner's helmet and climbed up a vertical ladder and collected rock samples etc. She had a ball. Most of the time she amazes me with all the things she CAN do, so that I almost forget about all the cannots. And I sometime ignore Penina's mannerisms because that's just who she is... But at times such as the Indy conference when we walked into a room full of children with CHARGE, I am shocked at how much she resembles the others.... What I thought was Penina's individuality could very well be lumped together with other CHARGE behaviours. I think that's why the listserv, the foundation and the conferences are very important to us. This connection is so valuable! Not only for coping strategies, but also the essential understanding - " I know what you're going through " . After all, how can you explain hand-flapping to outsiders?! Best, Anne, mom of Penina (CHArgE, almost 5 years and 10 months old) Keedy wrote: > I'm not Janet nor do I have her patience nor absolute gift as a mother and > foster mom, (or her handflapping ;-) attribute for that matter), but I love > your comment Anne. > > At 08:37 PM 5/31/02 -0400, you wrote: > >Janet, > > > >But do you look as if you're about to take off in flight??? > > > >:-) > > > >Anne > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi , We missed you in Indy. I am looking forward to the Cleveland conference. Penina has grown so much over the last year - who knows what she'll be like in 2003? Kindergarten has been wonderful, and we were lucky enough to get Penina into the after school daycare program which is run by educators (not baby-sitters). On a recent pedagogical day, the daycare took the kids to a real mine. Penina wore a miner's helmet and climbed up a vertical ladder and collected rock samples etc. She had a ball. Most of the time she amazes me with all the things she CAN do, so that I almost forget about all the cannots. And I sometime ignore Penina's mannerisms because that's just who she is... But at times such as the Indy conference when we walked into a room full of children with CHARGE, I am shocked at how much she resembles the others.... What I thought was Penina's individuality could very well be lumped together with other CHARGE behaviours. I think that's why the listserv, the foundation and the conferences are very important to us. This connection is so valuable! Not only for coping strategies, but also the essential understanding - " I know what you're going through " . After all, how can you explain hand-flapping to outsiders?! Best, Anne, mom of Penina (CHArgE, almost 5 years and 10 months old) Keedy wrote: > I'm not Janet nor do I have her patience nor absolute gift as a mother and > foster mom, (or her handflapping ;-) attribute for that matter), but I love > your comment Anne. > > At 08:37 PM 5/31/02 -0400, you wrote: > >Janet, > > > >But do you look as if you're about to take off in flight??? > > > >:-) > > > >Anne > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Well, Janet, I guess everyone needs a hobby! ;-) Anne JPM4189@... wrote: > Anne, > > Actually, I've come close to hitting people! > > Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Well, Janet, I guess everyone needs a hobby! ;-) Anne JPM4189@... wrote: > Anne, > > Actually, I've come close to hitting people! > > Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Well, Janet, I guess everyone needs a hobby! ;-) Anne JPM4189@... wrote: > Anne, > > Actually, I've come close to hitting people! > > Janet Quote Link to comment Share on other sites More sharing options...
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