Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Lacey: I am very interested in the dental aspects also at this point. is having to have her baby teeth pulled when her permanent ones come in - they won't fall out on their own. Also, she has to have cleanings every three months because her enamel is evidently soft. She hasn't had any cavities to be filled (knock on wood!), but we have to assist with her brushing or it could easily get away from us and she would then need fillings. One thing I have found out is that growth hormone deficiency can result in poor tooth development, soft enamel, and jaw problems (since growth hormone effects bone and your jaw is, after all, a bone). is growth hormone deficient and receives replacement therapy for that. I've been doing a bit more study on this since having to do more frequent cleanings, and also having to get 6 teeth pulled in the last year! Our dental insurance only covers 2 cleanings per year, and maybe it could be covered under medical if we can prove it is related to a health/medical issue, not just a " typical " dental issue. As I find out more relating to this I will post to the list. Welcome to CHARGEland! Friends in CHARGE, Marilyn Ogan Mom of Ken (13) and (10, CHARGE+) Wife of Rick I am new ! Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Hi Lacey, Welcome to the group! We have an 8 month old little guy that was born premature. He also drinks liquids orally and has a g-tube but won't eat enough. We are trying to get a swallow study done soon to see if there is a physical reason that he just stops at about 2 or 3 ounces. We usually end up giving him at least a couple ounces through the tube after he tries to eat. His record orally is 4 ounces and that was some time ago. I will report any findings that we have on that matter. He does get very frustrated about it, though. Our son, , goes to therapy to work on muscle tone and movements, etc. Our occupational therapist says that that arching is common in premies (it seems very common among charge kids) and is an important thing to try to counter-balance. She and others agree that this is the wong type of development for him to have. He should be focussed on his stomach and front side so he can sit up. is rolling over and trying really hard to crawl right now, but when he's in a position he doesn't want to be in, he immediately arches and squirms away. I think those muscles are stronger and easier to use. They sit him up and have him play with toys and look around and don't let him arch away. They don't push it, but they are tough on him. has never liked sitting as it causes problems with his breathing (not sure why, possibly the TEF repair he had.) I make sure to hold him in the forward " C " position when i'm feeding him now and I try not to let him arch out of it. If you have any more questions, feel free to ask. We're not experts by any means as is still young and we are following the listserver very closely. Bo - dad to sean, 8 mo's, 14 1/2 lbs. I am new ! Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 also had 7 teeth pulled because of crowding. Then he had a retainer bolted to his 2 back teeth to keep the front teeth from becoming too prominent. Now he is just getting a regular retainer as he is not mature enough to have braces yet and take good enough care of his dental hygiene. " They " also seem to get excessive plaque etc. Welcome to the list, we are here for you! :-) Barbra M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Dylan's top and bottom middle teeth have fallen out in the last 6 months. Permanent ones are coming in on the bottom, but there is no sign of teeth coming in on the top. I am looking forward to the dental appt the end of this month. Sometimes I wonder if the teeth are even there. The first one came out in Nov. That just seems a long time to have no sign of a tooth coming in. Kim > Lacey: > I am very interested in the dental aspects also at this point. is > having to have her baby teeth pulled when her permanent ones come in - they > won't fall out on their own. Also, she has to have cleanings every three > months because her enamel is evidently soft. She hasn't had any cavities to > be filled (knock on wood!), but we have to assist with her brushing or it > could easily get away from us and she would then need fillings. > One thing I have found out is that growth hormone deficiency can result in > poor tooth development, soft enamel, and jaw problems (since growth hormone > effects bone and your jaw is, after all, a bone). is growth hormone > deficient and receives replacement therapy for that. I've been doing a bit > more study on this since having to do more frequent cleanings, and also > having to get 6 teeth pulled in the last year! Our dental insurance only > covers 2 cleanings per year, and maybe it could be covered under medical if > we can prove it is related to a health/medical issue, not just a " typical " > dental issue. > As I find out more relating to this I will post to the list. > Welcome to CHARGEland! > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (13) and (10, CHARGE+) > Wife of Rick > > I am new ! > > > Hi all, My name is Lacey, my husband and I have a 10 month old son, > Luke (lucas) with Charge He was diagnosed at 2 months old at > Stanford Childrens hospital in CA. I have so many questions I dont > know where to begin. My current issues are : > 1) Getting him to eat more (he has a g-tube) and drink liquids. > 2) Any experience people have with common dental problems (luke > seems to perhaps have a cavity in one or more baby teeth) > 3) Any experience people have with a Charge baby who " arches " or > extends backwards very frequently (although he is crawling). > > Thanks - any advice is appreciated! > > > > 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 April 11, 2003 Report Share Posted April 11, 2003 kim- Has Dylan had any dental xrays? Aubrie has (I can't remember why) and we know that she has a microtooth that will have to be pulled when it comes in and she is missing one permanent tooth. They are both upper teeth but I can't remember which ones they are -- maybe the incisor (one either side of your 4 front teeth?)? Michele W Re: I am new ! Dylan's top and bottom middle teeth have fallen out in the last 6 months. Permanent ones are coming in on the bottom, but there is no sign of teeth coming in on the top. I am looking forward to the dental appt the end of this month. Sometimes I wonder if the teeth are even there. The first one came out in Nov. That just seems a long time to have no sign of a tooth coming in. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Lacey- My daugher, Aubrie, is 5 years old. She had a Gtube placed at 3 months (NGtube before that) and it was removed before 2 yrs of age. If Luke is able to drink, that is so encouraging!! In our experience, persistance paid off. It was incredibly frustrating along the way. Progress was so so sl-o-w. But finally she ate enough to be weaned. You will need a good feeding therapist to help you. Ask specific questions of the group as you go. Aubrie does not have problems with cavities so I'm not much help there. Aubrie did arch terribly as an infant. She would sleep in an arched position sometimes! 's post brought back some memories. We think Aubrie's arching was due to unbalanced muscle tone. She hated being on her tummy and had a hard time sitting. We worked and worked at it. I think she also arched due to reflux discomfort. I can't remember details of therapy, but a good PT can help you with it. OT too -- it seemed like they overlapped quite a bit in those early years. Sensory issues were huge. Both the OT and PT were working on sensory and positioning issues if I remember right. Welcome to the list! I have found answers to my questions and invaluable support here. I hope our " CHARGE family " can do the same for you! Michele W mom to Aubrie (5 yrs) CHaRgE and (11 yrs) I am new ! Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 I predict the dentist will want to do x-rays at the appt the end of this month. He hasn't had any yet. Kim > kim- > Has Dylan had any dental xrays? Aubrie has (I can't remember why) and we know > that she has a microtooth that will have to be pulled when it comes in and she > is missing one permanent tooth. They are both upper teeth but I can't > remember which ones they are -- maybe the incisor (one either side of your 4 > front teeth?)? > > Michele W > > Re: I am new ! > > > Dylan's top and bottom middle teeth have fallen out in the last 6 months. > Permanent ones are coming in on the bottom, but there is no sign of teeth > coming in on the top. I am looking forward to the dental appt the end of > this month. Sometimes I wonder if the teeth are even there. The first one > came out in Nov. That just seems a long time to have no sign of a tooth > coming in. > > Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Lacey, WELCOME to the list and congratulations on the birth of your son. I'm going to say YES to number 3! My daughter was ALWAYS arching backwards, I think this can be common. She also backscooted a lot. One thing the physiotherapist told us was to get rid of the " exersaucer " she was using a lot at the time. I don't know if you're using one, but it encourage her backward arching and the PT said we wanted her leaning forward, not backward. She got a " pony walker " which helped her with that and her walking as well. It may be something to ask Luke's PT about. ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca I am new ! Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Welcome to the list Lacy and Luke Kay Adult charger She who laughs.... LASTS I am new ! Hi all, My name is Lacey, my husband and I have a 10 month old son, Luke (lucas) with Charge He was diagnosed at 2 months old at Stanford Childrens hospital in CA. I have so many questions I dont know where to begin. My current issues are : 1) Getting him to eat more (he has a g-tube) and drink liquids. 2) Any experience people have with common dental problems (luke seems to perhaps have a cavity in one or more baby teeth) 3) Any experience people have with a Charge baby who " arches " or extends backwards very frequently (although he is crawling). Thanks - any advice is appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Hi Lacey, Well I hope all is going well for you and lucas. The feeding issue I am afraid to tell you it is going to be an ongoin battle because a lot of our little angels have that problem. My daughter Eileen is 34 months and does not take anything by mouth and it is a slow process on increasing her g-tube feedings. Dental problems are big time. Eileen will have to have a lot of work on her mouth when she is about 7 years old and we cannot tell if she has any cavities because she will not open her mouth for anyone. Eileen did arch her back a lot and she ended up crawling with her back arched and we did a lot of therapy to correct that. I hope all goes well with you and your family and if you need anything let us know. Valentine, mom, Marissa 12 years, Christian 6 years, Eileen 34 months CHARGE Sacramento, CA I am new ! > Hi all, My name is Lacey, my husband and I have a 10 month old son, > Luke (lucas) with Charge He was diagnosed at 2 months old at > Stanford Childrens hospital in CA. I have so many questions I dont > know where to begin. My current issues are : > 1) Getting him to eat more (he has a g-tube) and drink liquids. > 2) Any experience people have with common dental problems (luke > seems to perhaps have a cavity in one or more baby teeth) > 3) Any experience people have with a Charge baby who " arches " or > extends backwards very frequently (although he is crawling). > > Thanks - any advice is appreciated! > > > > 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...
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