Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Hello I to am new to this Charge List too I have a 9yr old with a trach he has had it since two months old it is a lot of work at the beggining but as time goes on you will get used to it and now to me it is a piece af cake. My husband and are even considering forter care (I would love to take care of another child with a trach). Hope you dont think I am crazy. Keep in touch. Debbie McCormick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Hi Suzanne, My name is and I have twin Chargers that are 5. I do not have any experience or advice to offer you about a Trach, but I can talk to you about having " DOUBLE " Chargers!! We welcome you to the list and I am sure you will find it most helpful. Murray mom to twin Chargers and and wife to Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Dear Suzanne, I thought I was the only Dutch person on this service.It is great. I follow the communication between parents and professionals because it gives me as a scientist a lot of information about the management problems of children with Charge.Moreover it helps me to prepare my contribution as a key note speaker for the next charge conference in Cleveland.There is a lot of knowledge on Charge children in the Netherlands. Dr Mrianne Vink is doing some excellent work in this area and also Dr Admiraal who is a consultant for Viataal (formely IvD) at Sint-Michielsgestel. I am an expert in the area of behavior management ( my new cd rom will deal with this matter). I am leaving my office for a while, but I will be back in 4 weeks from now. I am happy to assist you with your questions. Jan van Dijk (prof.dr) two CHARGE children Hi, I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël and . Both have different symptoms. My youngest is 18 months and has a tracheo stoma. Does anybody of you has experience with either two charge-childeren or one with a trach? I think it is a hell of a job, but I don't have to tell you this! Another question: my oldest (5 years) used to ask one question a thousand times. It has become less since he is at school. But he still does. Does or did any of your children show the same behaviour? Have you made up an explanation for it? Well, so far...thank you! Suzanne 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 January 5, 2003 Report Share Posted January 5, 2003 Welcome, Suzanne, There are several people on this list or who have been on this list who have two children with CHARGE. I don't have two children with CHARGE, but it was thought that I lost a twin during the first 2 months of gestation when I was pregnant with my daughter, Kendra. Kendra did have a trach for 3 years due to a narrow trachea, most specifically sub-glottic stenosis. She was found at two years of age to have a double aortic arch. Once the double aortic arch was repaired, she healed and was able to have the trach removed at three years of age. The double aortic arch did not show up on an ECHO, but did show on an angiogram. The narrowing created by the double aortic arch showed on a barium swallow and looked like a 'hairpin' like turn. Trachs are very difficult for some and not so difficult for others. For us it was difficult because sometimes the tracheotomy blocked our daughter's airway. Her airway has always been very delicate. The repeating of questions may be related to some obsessive-compulsive behavior. It may be something else as well. Our daughter has obsessive compulsive disorder that responds somewhat to serotonin therapy. Some people believe that obsessive-compulsive disorder and tics may be related to strep infection. The jury is not in on that one yet, but if you are interested, there is information on the PANDAS website which talks about immune issues and strep. There is an interesting book that talks about serotonin deficiency and other conditions called: The Schwarzbein Principle. It is written by Dr. Schwarzbein who is a sister-in-law of a CHARGE mom on this list. Her name is Barbra Mousouris and she mentioned this book which I find extremely interesting. It is available through Amazon. If you don't find symptoms in the book that relate to your children, you just might find symptoms in the book that relate to you or a relative. It is about gaining good health through nutrition and being aware of many things to avoid. There is an accompanying cook book. She recommends adequate protein, fats, and limited carbohydrates. She also is certain sugar is extremely bad for the system. She doesn't like artificial foods either. She healed herself of many problems and in the process wrote this book about what she has learned. She is an endocrinologist. I am always interested in people from the Netherlands as many of my relatives came from there. :-) When I visited Amsterdam people kept asking me if I am Dutch. What other symptoms do your two boys have? How are they doing with communication? Best wishes and welcome again to this list. Mom to Kendra, and Camille two CHARGE children Hi, I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël and . Both have different symptoms. My youngest is 18 months and has a tracheo stoma. Does anybody of you has experience with either two charge-childeren or one with a trach? I think it is a hell of a job, but I don't have to tell you this! Another question: my oldest (5 years) used to ask one question a thousand times. It has become less since he is at school. But he still does. Does or did any of your children show the same behaviour? Have you made up an explanation for it? Well, so far...thank you! Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Suzanne, welcome to the list. I only have one CHARGER, but that is enough most days. He is 7 and on the milder end of the spectrum ---all things considered. But he too, asks numerous questions over and over and over and .......you get the idea. Usually why ?'s, or what a re we going to do ......it could be a week from monday--needs to know what is happening and even if he knows, he still asks. I think it's a charge thing--maybe I'm wrong, but my other two are not like that. again welcome, I waasn't any help I'm sure, but your not in the boat alone. mom to Timmy 7 ChARGE, keegan 4 3/4, liam 2 wife to pat two CHARGE children > Hi, > I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël > and . Both have different symptoms. My youngest is 18 months > and has a tracheo stoma. Does anybody of you has experience with > either two charge-childeren or one with a trach? I think it is a hell > of a job, but I don't have to tell you this! > > Another question: my oldest (5 years) used to ask one question a > thousand times. It has become less since he is at school. But he > still does. Does or did any of your children show the same behaviour? > Have you made up an explanation for it? > > Well, so far...thank you! Suzanne > > > 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 January 6, 2003 Report Share Posted January 6, 2003 Aubrie is like this too. I hadn't really thought much about it being a CHARGE thing -- but perhaps it is. She usually knows the answer to her questions. I'll just turn it back to her and she'll answer it for herself. I wonder if it's just a way to keep conversation going or something. It's cute sometimes and annoying sometimes. Mostly it's just tiring. Anyway -- I was interested to see that it is common among our kids. As as you said, , my other child and all of the preschoolers I taught weren't like that -- at least not to the same degree. Michele W mom to Aubrie (5 yrs) Re: two CHARGE children Suzanne, welcome to the list. I only have one CHARGER, but that is enough most days. He is 7 and on the milder end of the spectrum ---all things considered. But he too, asks numerous questions over and over and over and ......you get the idea. Usually why ?'s, or what a re we going to do .....it could be a week from monday--needs to know what is happening and even if he knows, he still asks. I think it's a charge thing--maybe I'm wrong, but my other two are not like that. again welcome, I waasn't any help I'm sure, but your not in the boat alone. mom to Timmy 7 ChARGE, keegan 4 3/4, liam 2 wife to pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Hi Suzanne, I have a 2 1/2 year old daughter with Charge and she has a trach as well as a g-tube along with all of the other things that go with our beautiful children. It is overwhelming at times like you already know that and I cannot imagine have 2 children with charge. You are a real straong woman. Take care, Valentine two CHARGE children Hi, I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël and . Both have different symptoms. My youngest is 18 months and has a tracheo stoma. Does anybody of you has experience with either two charge-childeren or one with a trach? I think it is a hell of a job, but I don't have to tell you this! Another question: my oldest (5 years) used to ask one question a thousand times. It has become less since he is at school. But he still does. Does or did any of your children show the same behaviour? Have you made up an explanation for it? Well, so far...thank you! Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Suzanne, Welcome to the list! I can't even imagine doing this double time, you must be exhausted!!! I don't have trach experience but the question over and over and over again, I DEFINITELY have experience with... I would answer her maybe about 3 times, trying to make sure she really could hear/see the answer, and once I was sure that I had gotten through, I would tell her.. " Okay, Mommy is going to answer you ONE MORE TIME, and then it's FINISHED " and then I would answer her, then say & sign " finished " and then COMPLETELY ignore the question (it got really bad in the car but has since gotten better). I would start talking about something else (trees, cars, houses, anything) until she would stop. Good luck, I know it's difficult dealing with the repetitive questioning... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 two CHARGE children Hi, I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël and . Both have different symptoms. My youngest is 18 months and has a tracheo stoma. Does anybody of you has experience with either two charge-childeren or one with a trach? I think it is a hell of a job, but I don't have to tell you this! Another question: my oldest (5 years) used to ask one question a thousand times. It has become less since he is at school. But he still does. Does or did any of your children show the same behaviour? Have you made up an explanation for it? Well, so far...thank you! Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Welocome to the list...My son has a trach I dont have two CHARGE kids but will have two kids in march..... mom to 15 months.. trach and g-tube http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets http://community.webtv.net/maryechick12/birthdayboy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Hi Suzanne, Welcome to the list. My 6 year old CHARGEr would obsess over certain things. When she was younger she would ask " how old are you? " a million times. On professional advice we stopped reacting to this. Just ignored it. She stopped!! I'm not sure how much of that was 4 year old and how much was CHARGE..... Anne, mom of Penina (CHARGE, 6) " suzannekuik " wrote: > Hi, > I am Dutch newcomer to this list. I have two sons with CHARGE, Daniël > and . Both have different symptoms. My youngest is 18 months > and has a tracheo stoma. Does anybody of you has experience with > either two charge-childeren or one with a trach? I think it is a hell > of a job, but I don't have to tell you this! > > Another question: my oldest (5 years) used to ask one question a > thousand times. It has become less since he is at school. But he > still does. Does or did any of your children show the same behaviour? > Have you made up an explanation for it? > > Well, so far...thank you! Suzanne > > 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 January 7, 2003 Report Share Posted January 7, 2003 Hi everybody, Thank you so much for all your replies! I should have subscribed much earlier... I tell you shortly about my two CHarge-sons. Daniël is five years now. He was born with a Tetralogy of Fallot, a doule sided cleft (lip/palate/jaw). At two years he got a facial palsy. He has a grow deficiency (looks like a two year old), and developed a speech problem. Fortunatley we taught him to sign as soon as he was ten months old. And over the last year his speech has become more understandable. He is very persistent of character, sweet and cheerful, but difficult to lead him to other ideas... As I said in my former mail, he suffered a great deal of this repetitive questioning, though it seems to disappears slowly since he went to a school (of children with difficulty learning). And he has the G (very little genitals). HE also developed, very young, an interest for girl's cloths, and for some months he wanted to be called 'girl', he would tell everybody that he was a girl and even used the bathroom in a girl's way. We allowed him to dress up at home, but had terrible mornings when he had to get dressed as a boy to go to school or outside. The compromise was taht he was allowed to choose some trousers that he liked, and indeed they were a bit girlish. Has any of your children the same interest? I thought raising Daniël was the toughest thing to do. But all his handicaps were nothing compared to those of his little brother JOnathan, who was born with a connection between his air pipe and oesphagus. When operated on this with four days, both his vocal cords turned out to be paralysed, so that's why he got a trach, which he won't get rid of in the next ten years. has one C, his other eye seems to function okay. He is deaf at one ear and got an hearing aid in his other when he was three months old. Though we sign with him all the time, he does not make signs himself. He seems to understand some of the signs we make. He is still not able to sit, and he started crawling backwards on his back only two months ago. He has a feeding tube, and will keep this until he stops refusing food. Wich is an impossible situation (with the first we did a 'hunger provocation therapy' which worked, but with JOnathan this is too dangerous, for the food easily slips into his airpipe). Though JOnathan is very well tempered, almost never cries, plays for hours very contently, I hate the trach. I think it is impossible--but of course we take care of him. He is ill all the time, has had so many antibiotics that I fear immunity, and think that it is impossible for him to develop when coughing all the time. Even during nights I get up every 15 minutes, sometimes even more, to sunction him. Apart from his father and me, there are happily three other people who dare to babysit him for a couple of hours. I am afraid of him dying of immunity to antibiotics, or when he is short of air...The last time I called the ambulance it took them 20 minutes!! (well, this was not in the 'big town' Amsterdam, but on the countryside). I died almost myself of fear. So Debbie, you wrote I would think you were crazy to like to take care of trach children. I don't think you are crazy! I think you are a saint! Well, so much for now. I have seen the pictures of your wonderful children. As soon as I get my scanner I will put mine on the web as well. Thank you for sharing, Suzanne Quote Link to comment Share on other sites More sharing options...
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