Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 Chantelle, I must have missed something, when did you have an operation? It was on your Jaw? I hope it all went well. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Hi Chantelle, You mentioned recently about a jaw operation , what did you have done ? I am guessing you had your bottom jaw broken and exended as this is what the surgeons are planning for Larry midway through his treatment for braces Before that happens I would like the specialist to fit Larry with a Rapid " Maxillary Arch Expander " Does anyone know much about this device and has anyone been through this with their Charge teenager ? Larry has an exceptioally high and narrow pallet, he often gets pills stuck up there and I have to fish them out with a cotton bud, he never gets food stuck because it is too narrow. this really adds to the problems he has with his digestive system as he is unable to chew properly. It looks like we will finally be getting an appointment at the childrens hospital in Perth and I want to go armed with all the right information, so any help would be greatly apreciated. Jan Hewitson Mum to Belinda 18 and Larry 16 Perth West Australia Re: Help, I have a small problem > > > > Are you pregnant? > > > > No, im not. Im not sexualy active, and I havent > even started puberty yet! even if I did, I would > not get pregnant, because I dont want to risk > passing charge. It may have to do with an after > effect of my jaw opperation. Im not exactly sure. > Any thoughts are welcome thogh. > > Chantelle > > ===== > Insanity takes its toll, please use exact change.my website...http://www.angelfire.com/ky2/StargateSG1My CHARGE website...http://www.angelfire.com/ca5/CHARGEsyndrom > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Jan, We are looking at palate expansion for Aari too, so I'm asking the same questions you are. they need to expand his palate to be able to do the bone graft (another surgery I'm really looking forward too, thank goodness for pediasure and exsure because he wont be able to eat solid foods for a month to 6 weeks). So any info I can find I'll pass off to you.. Casey Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Jan, Patty had the expander. There are two types. One is a retainer and the other is permanent. She had the one that was permanent. Patty also has a high arch in her palate. There is a little screw in the middle that each night you take this little key and turn the screw as directed by the doctor. This worked for her-though I don't know how much. The only problem was sometimes food would get lodged in the space between the expander and her palate. With the retainer you take it out each night, turn it, and put it back in. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 bonnie, who decides an expander is needed...you dentist/orthodontist or your craniofacial team/ent? i am intrigued by this...michael had always had a ridiculously high and narrow palate and no one suggested we may need to do anything about it. he did not have a traditional cleft, and the verdict is out on the submucous cleft if that helps. tia! kris mom to michael (7.5) CHaRGE syndrome and kolleen (1!) long branch, nj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Kris, Patty has a submucus cleft, short soft palate and split uvula. No one ever said anything when she was little. She always went to our regular dentist who had problems because she cant open her mouth that wide and she has more saliva than normal. I think he just didn't know what he was doing. We found a dentist for special needs children. They pulled around 6 teeth to make room for the adult teeth. Patty didn't loose baby teeth on her own except for two. The adult came in behind the baby. The dentist put in a permanent spacer on her lower teeth till the adult teeth came in. That's gone now. As they grow their palate changes with them. Hers didn't really. The dentist sent us to an orthodontist. He is the one who prescribed the other spacer. She had it for a while. I thought it was gross but no problem. Once in a while she did choke on food like pasta or mashed potatoes which would get stuck up there AND in her throat. That's about it. It was a pain to brush her teeth though. And her speech was a little difficult. Her teeth look great now. I can't tell if her palate is wider or not. To me her face has changed since then. And, we never have seen her bottom teeth when talking or smiling. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Hi Bonnie, the permanent one that you screw while it is attached is the one that was suggested for Larry, how old was Patty when she had it done and how long did it take ? How severe was her palate ? Thanks. Jan Hewitson Re: Digest Number 896 > Jan, > > Patty had the expander. There are two types. One is a retainer and the > other is permanent. She had the one that was permanent. Patty also has a > high arch in her palate. There is a little screw in the middle that each > night you take this little key and turn the screw as directed by the doctor. > This worked for her-though I don't know how much. The only problem was > sometimes food would get lodged in the space between the expander and her > palate. With the retainer you take it out each night, turn it, and put it > back in. > > Bonnie > > > ------------------------------------------------------------------------ > Get your money connected @ OnMoney.com - the first Web site that lets > you see and manage all of your finances all in one place. > http://click./1/3012/2/_/22564/_/957867112/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Jan, I think Patty was around 13 when she had it put in. I also think she wore it for about 6 to 9 months. I couldn't tell you how " bad " her palate is because I do not know what to compare it with. I never really was told. She has a high palate, submucus cleft, split uvula and short soft palate. Like I said, it wasn't that bad. Making a mold of her mouth bothered her-she gagged a lot but got past that. Food would get stuck between it and the top of her palate, but we got it out. Keeping her mouth clean was the hardest part. We also had to go for checks often to make sure we didn't open the palate too far too fast. She also had many teeth pulled. Her jaw was too small for the amount of teeth. When she had the bottom baby teeth pulled she had a spacer for that while the adult teeth grew in. Patty is missing 3 of her 12 year molars and her wisdom teeth-which is good! Again, the spacer wasn't that bad as long as you keep in touch with the orthodontist and watch it. And-eating was a little hard but she made it through. She eats soft foods anyway. Honestly, I can't tell you if it was great or not. We haven't been back to the orthodontist in a while. It was during all that when Patty got diagnosed with CHARGE. We didn't know before. Bonnie Quote Link to comment Share on other sites More sharing options...
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