Guest guest Posted April 16, 2000 Report Share Posted April 16, 2000 Dear Amy - I hope this helps a little - is 10, he will be 11 in September, and he still has a button and he is still primarily tube fed. He doesn't care for textures (understatement). He will freely sip soy milk, small amounts or as much as 8 ounces in a sitting. It varies with relation to his feeding times and his health. He will tolerate spoon feeding yogurt or Gerber's Banana Tapioca, but not alot else. He sometimes aspirates when he swallows. He sometime has naso esophageal aspiration (it comes out his nose). Sometimes it seems to pool in his valleculm and aspirate later, though less and less of that now. He never seemed to care one way or the other either until recently. I think now that he's 10 he has a strong desire to be " just like everyone else " (I think that's developmentally appropriate). The desire to be an oral eater occured at the same time that he became self- conscious about his trach, hearing aids and height. I've gone back and forth on this. I was aggressive about the oral feeding when he was little, and he was almost always sick anyways. Once he started to be healthy more often than not, I became more cautious and much more protective of his health (avoiding aspiration). But the improvements in his eating don't correlate with working on it, they correlate with seizing the opportunity when I see that he is already handling his own body secretions better. There were definitely spurts in improvement at ages 2, 4 and 9. When I think of how uncomforable I am when I " swallow wrong " , and how tolerant he is at humouring me to " work on his swallow " I am truly humbled. More and more I trust to his judgement. I can tell when he's afraid or when he knows best - when to encourage and when to back off. It takes a baby with an intact swallow an intense and constant year of doing not much other than mouthing, swallowing and exploring to handle a variety of foods. In hindsight, I always went with my " gut " instinct, sometimes in the face of therapists best advice and intentions. No one else lives with your child and has been there from the start to now. Often I worried that I was doind a disservice to , or I was hiding my head like an ostrich. But now I see that I was responding to him the only way I knew how. And so far I haven't made too many grueling errors! The best of luck to you on whatever you decide. I know that you will make the best and right choices for your daughter Brittany - you always have. What normal parent wouldn't second guess and doubt their own decisions? Especially when we seem to forge a " road less travelled " . Exploring options for me has always been an exciting opportunity to see our set of facts from another viewpoint and perspective, which sometimes is comforting, is almost always englightening, and sometimes can really help shift a stuck paradigm Good luck, and take care - yuka (, Elliot and Ethan's mom) p.s. what a lovely letter you wrote in the latest CHARGE newsletter! I am so glad that you and your family are well. Original Message: Hello CHARGE family, With over 200 family members here, I hope someone can help me out. My daughter, Brittney is 7 1/2 yrs old. She is " completely " tube fed. Has no desire to eat by mouth. She knows we do and she'll feed us. But she wants " nothing " to do with it. My husband says " we've eaten by mouth all our lives to take it away is something we'd fight against, Brit eats by tube so why force her to eat like us " I don't know if I agree. What if she can eat by mouth someday? Why if I'm neglecting her of that? I don't know of any CHARGE kids older than Brit with buttons? Are their any out there? If so, please let me know of you!!! If no older charger has buttons, then why should I think or let my husband think it's ok for Brittney? does anyone know what I'm trying to explain? Kind of like " if the shoe fits, where it " Im suppose to talk to Brits doctor about sending Brit to a specialist at a feeding clinic on tues. I'd like to hear responses before then. Thank you Amy mom to Brit 7, 5, 3 ----------------------- Internet Header -------------------------------- Sender: sentto-24022-15886-ywithboys3=compuserve.comreturns (DOT) onelist.com Received: from ck. (ck. 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(10.1.2.27) by mta1 with SMTP; 16 Apr 2000 20:49:43 -0000 Received: (qmail 24320 invoked from network); 16 Apr 2000 20:49:43 -0000 Received: from mail1.voyager.net (209.153.128.76) by qg. with SMTP; 16 Apr 2000 20:49:43 -0000 Received: from bobc (d5.as1.hsng.mi.voyager.net [216.93.39.198]) by mail1.voyager.net (8.9.1/Voyager-MailX) with SMTP id QAA04350 for <CHARGEegroups>; Sun, 16 Apr 2000 16:52:23 -0400 (EDT) Message-ID: <00c501bfa7e5$0c058160$c6275dd8@bobc> To: <CHARGEegroups> X-Priority: 3 X-MSMail-Priority: Normal X-Mailer: Microsoft Outlook Express 5.00.2615.200 X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 MIME-Version: 1.0 Mailing-List: list CHARGEegroups; contact CHARGE-owneregroups Delivered-To: mailing list CHARGEegroups Precedence: bulk List-Unsubscribe: <mailto:CHARGE-unsubscribeegroups> Date: Sun, 16 Apr 2000 16:47:56 -0400 X-eGroups- Reply-To: CHARGEegroups Subject: older kids/buttons? 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Guest guest Posted April 16, 2000 Report Share Posted April 16, 2000 Amy, Kennedy has a button but is alot younger than Brit. We are going to feeding clinic on May 8. She has been eating Minigo the last couple of days and loving it (I was supposed to wait until the end of April but what the heck she wanted to do it) The only thing I would say would be the difference between our ways of eating is that oral eating is such a "social" activity throughout life. But, on the other hand if she is totally healthy I don't know about rocking the boat. It's a big decision. We are going to try it again, but I don't know how many times you should let them get aspiration pneumonia before you stop trying... Good luck girl... Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 older kids/buttons? Hello CHARGE family, With over 200 family members here, I hope someone can help me out. My daughter, Brittney is 7 1/2 yrs old. She is "completely" tube fed. Has no desire to eat by mouth. She knows we do and she'll feed us. But she wants "nothing" to do with it. My husband says "we've eaten by mouth all our lives to take it away is something we'd fight against, Brit eats by tube so why force her to eat like us" I don't know if I agree. What if she can eat by mouth someday? Why if I'm neglecting her of that? I don't know of any CHARGE kids older than Brit with buttons? Are their any out there? If so, please let me know of you!!! If no older charger has buttons, then why should I think or let my husband think it's ok for Brittney? does anyone know what I'm trying to explain? Kind of like " if the shoe fits, where it" Im suppose to talk to Brits doctor about sending Brit to a specialist at a feeding clinic on tues. I'd like to hear responses before then. Thank you Amy mom to Brit 7, 5, 3 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 April 17, 2000 Report Share Posted April 17, 2000 Tim, Thanks for your input. I will sneak syurp, jelly, gravy etc on her lips. But she's highly allergic to dairy. So that right there would minimize her choices. Also, thank you sooo much for your behavior on CHARGE kids. I have the IEP today and your report will come in handy so very much. amy Re: older kids/buttons? Amy, will be 11 next month. He is still tube fed through his button. We keep trying to get him to eat by mouth, but other than a little ice cream and sometimes some tastes of his formula, he does very little. We have not given up hope. But we are not pushing it very hard, either. Tim Hartshorne, father of Bob Cronk wrote: Hello CHARGE family, With over 200 family members here, I hope someone can help me out. My daughter, Brittney is 7 1/2 yrs old. She is "completely" tube fed. Has no desire to eat by mouth. She knows we do and she'll feed us. But she wants "nothing" to do with it. My husband says "we've eaten by mouth all our lives to take it away is something we'd fight against, Brit eats by tube so why force her to eat like us" I don't know if I agree. What if she can eat by mouth someday? Why if I'm neglecting her of that? I don't know of any CHARGE kids older than Brit with buttons? Are their any out there? If so, please let me know of you!!! If no older charger has buttons, then why should I think or let my husband think it's ok for Brittney? does anyone know what I'm trying to explain? Kind of like " if the shoe fits, where it"Im suppose to talk to Brits doctor about sending Brit to a specialist at a feeding clinic on tues. I'd like to hear responses before then.Thank youAmy mom to Brit 7, 5, 3 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 April 17, 2000 Report Share Posted April 17, 2000 Amy, I am also trying to find answers to feeding. Jack was totally orally fed up until last June but every meal was a nightmare. He only ate yoghurt,fromage frais and occasionally some pureed soup and not very much of any of this. He also drank 12-16oz formula milk per day. He would only drink 2-3 oz at a time and sometimes even less. Jack was also breastfed (with difficulty) until he was 10mths old.Meal times were a battle ground with both of us ending up in tears. He was never hungry and never cried for food. He had a videofluroscopy done when he was 20 mths old and this showed no problems. Jack can eat but chooses not to. To be honest it was such a relief to get the g-tube and know that he was getting the correct nourishment for the first time in his life. It was also as if an enormous weight had been lifted from all of our shoulders, especially Jack's. The difference in Jack since he had the g-tube put in has been incredible. His development has rocketed in all areas and especially his speech. Jack knows that we all eat and he will sit and feed food to us but will not put it in his own mouth. He still won't put anything in his mouth, not even his own fingers and hasn't ever wanted to chew on anything even when teething. He will now touch any texture and even play dough, shaving foam and sand without freaking out. I have tried missing out a bolus feed to see if he is hungry and will try some food orally without success. He just isn't interested. I'm not too worried at the moment and I'm hopefull that he will eventually show some interest in food but I do worry about what it will be like when he is older and the other kids start to notice. Jack is very smart and he knows exactly what is going on. I wonder if there is some other kind of physical problem that is causing him not to want to eat? Just wanted to let you know that I'll be looking for answers too!!! Please keep us posted on how it goes with Brit. Elaine mum to Elise (7yrs) & Jack(2.5yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 Amy, This surprises me that the epiglottis was removed. DO you know why it was removed?? Kendra, and Camille's Mom Portland, OR Brit's epligottis was removed too, so she's high risk for aspirationamy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 Amy- Thanks for your reply! footnote - is also DEATHLY allergic to eggs and milk. Even being in a room with boiled eggscan send into anaphalectic shock (luckily (?) he's already trached...... But there are lots of resources available on how to cope with dietary limitations, as milk allergy/intolerance is fairly common.....hence 's supping on soy products only (which also melt down to a very swallowable texture) take care - yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 , This was removed in my "ignorant" first years. I was told by the dr that it was doing more harm in than out. It was doing the opposite of what it should. I was 20 yrs old and brit being first child, I had NO idea what was going on. I doubt I would have had it removed if I knew more. Amy Re: older kids/buttons? Amy, This surprises me that the epiglottis was removed. DO you know why it was removed?? Kendra, and Camille's Mom Portland, OR Brit's epligottis was removed too, so she's high risk for aspirationamy 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 April 17, 2000 Report Share Posted April 17, 2000 Yuka, I'm glad to learn that is also " deathly " allergic to dairy. I don't feel alone on this issue. By the way, do you remember me? We wrote to each other when I lived in Denver. I moved from there back in 96. I remember you having your 3rd boy. You sent me a birth announcement. Amy Re: older kids/buttons? > Amy- > > Thanks for your reply! > > > footnote - is also DEATHLY allergic to eggs and milk. Even being in > a room with boiled eggscan send into anaphalectic shock (luckily (?) > he's already trached...... > > But there are lots of resources available on how to cope with dietary > limitations, as milk allergy/intolerance is fairly common.....hence 's > supping on soy products only (which also melt down to a very swallowable > texture) > > take care - > > yuka > > > 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 April 17, 2000 Report Share Posted April 17, 2000 Elaine, Thank you so much for taking the time to share your story. I need ALL the input I can get. I'm really struggling with this. When I think I have my mind made up, I change it again. Amy mom to Brittney 7 CHARgE, megan 5, robert 3 Re: older kids/buttons? > Amy, > I am also trying to find answers to feeding. Jack was totally orally fed up > until last June but every meal was a nightmare. He only ate yoghurt,fromage > frais and occasionally some pureed soup and not very much of any of this. He > also drank 12-16oz formula milk per day. He would only drink 2-3 oz at a time > and sometimes even less. Jack was also breastfed (with difficulty) until he > was 10mths old.Meal times were a battle ground with both of us ending up in > tears. He was never hungry and never cried for food. He had a videofluroscopy > done when he was 20 mths old and this showed no problems. Jack can eat but > chooses not to. To be honest it was such a relief to get the g-tube and know > that he was getting the correct nourishment for the first time in his life. > It was also as if an enormous weight had been lifted from all of our > shoulders, especially Jack's. The difference in Jack since he had the g-tube > put in has been incredible. His development has rocketed in all areas and > especially his speech. Jack knows that we all eat and he will sit and feed > food to us but will not put it in his own mouth. He still won't put anything > in his mouth, not even his own fingers and hasn't ever wanted to chew on > anything even when teething. He will now touch any texture and even play > dough, shaving foam and sand without freaking out. I have tried missing out a > bolus feed to see if he is hungry and will try some food orally without > success. He just isn't interested. > I'm not too worried at the moment and I'm hopefull that he will eventually > show some interest in food but I do worry about what it will be like when he > is older and the other kids start to notice. Jack is very smart and he knows > exactly what is going on. I wonder if there is some other kind of physical > problem that is causing him not to want to eat? > Just wanted to let you know that I'll be looking for answers too!!! Please > keep us posted on how it goes with Brit. > > > Elaine mum to Elise (7yrs) & Jack(2.5yrs) CHaRGE > Dumfries,Scotland > > ------------------------------------------------------------------------ > Get paid for the stuff you know! > Get answers for the stuff you don't. And get $10 to spend on the site! > http://click./1/2200/1/_/22564/_/956003431/ > ------------------------------------------------------------------------ > > 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 April 18, 2000 Report Share Posted April 18, 2000 Dear Does Kendra taste or smell??????? Hardy Keedy wrote: > Dear Amy, > > Kendra had her Mik-Key tube removed 1 and 1/2 years ago when she was 11 > years old!!!!! She is completely oral eating now but not all foods. > There is lots of reason to believe that Brit can eat orally. > > I think your husband is correct to realize that Brit may not want to eat > by mouth at this time. She is smart and realizes that it can be > dangerous. She likes her food the way she has received it so far and > for so long. I am also of the idea that care must be used in changing > something as important as eating and feeding. After all, feeding is not > only important for nutrition but it is one of the first ways we learn to > interact with others and learn that what others provide to us is > comforting. I believe it is one of the most important ways in which we > learn to trust others. > > I think if you want to proceed and you find a feeding specialist > competent with children with complex eating needs, then I would say go > for it. I would also remember Bob's concern that you don't want to take > away something so comforting to Brit without being sure you are > cautiously substituting an equally satisfying and safe way to eat. > > Kendra was not considered 'safe' to *try* oral eating until she was > about 4 and 1/2 years old. At that time she was cleared to try small > bits of near frozen sterile water and to receive oral-motor therapy. > The therapist had extensive training in this area and was a feeding > specialist. The therapist proceeded with 'ice therapy' to awaken the > nerves around Kendra's mouth and also needed to gently stretch some > muscles in her neck so she could position herself safely for eating. > > Kendra responded well and within a few months she was safely and eagerly > licking popsicles. She progressed over a year to the point of being > able to safely ingest small bits of pureed (think liquid) food. The > therapist gave her tastes of a variety of foods (clam chowder, etc.) and > Kendra always seemed eager to taste. > > By 6 years of age Kendra ate a lot of baby foods and smooth yogurts. > She still was tube-fed at school for several years. We kept seeing > improvements. She became totally oral with only taking medicines > sometimes by tube. > > The doctors told us to wait until 6 months after Kendra stopped using > her tube to remove it. We did not feel that 6 months was enough time > to be sure Kendra would not need the tube if she were sick or > hospitalized, so we waited a couple of years. > > She had the tube removed in 1998 and has done very well. We can now go > to restaurants and order baked potatoes, mashed potatoes, grilled cheese > sandwiches or pancakes and it is so fun for her. She really, really > enjoys eating like we do. She is still very cautious and is not safe > with some foods. She does not eat multi-textured foods safely and I > separate very-soft from minimally soft foods. For example, she chokes > on foods such as a stew that have very soft parts and some harder to > chew items. I separate the parts out and she does well with that. She > has oral apraxia and can not always differentiate between the textures. > She does not eat most raw vegetables or fruits but eats all of them > cooked and sliced or pureed. Being from California originally, it gives > me a big kick to see her eating artichokes. > > Wendi Wood also found tremendous success with electo-stim therapy to > help her child eat by mouth. I would also bring that information to > your doctor as that may be an avenue you wish to pursue. Perhaps you > have that information saved in your e-mails or in CHARGE Accounts? > > Best of luck with your appointment this week. Please let me know if I > can add anything or clarify anything for you. > > > Mom to Kendra, 13, CHARGE, , 19 and Camille, 22 > Portland, OR > > ------------------------------------------------------------------------ > Whatever you want, chances are you'll find it at one of the hundreds > of sites in The PointClick Network--like Disney.com, eCost.com, > FogDog.com and many more. You get paid as you shop and an additional > 10% off any purchase, anytime. > http://click./1/2994/1/_/22564/_/955921230/ > ------------------------------------------------------------------------ > > 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 April 18, 2000 Report Share Posted April 18, 2000 Ava wrote: > Dear > > Does Kendra taste or smell??????? Dear Ava, I believe that Kendra can taste well but I am uncertain if she can smell. I always thought you could not taste unless you can smell, but I now think that is not accurate. Kendra loves chocolate, clam chowder, vanilla ice cream and really likes vegetables and fruits. She loves syrup and waffles and has loved a variety of yogurt flavors although she is not eating them currently due to continued problems with exzema, constipation and possible behaviors. She makes clear choices of vanilla or raspberry or lemon yogurt flavors and makes choices of flavored jellos. She varies in whether she wants orange or grape or other kinds of juices. She loves homemade chicken soup with onion and garlic combined with mashed potatoes. I think she is strongly motivated to eat by flavors but I am uncertain about smell. She makes a very funny face eating potato salad that has mustard and onion, but she continues to eat it. I hope that answers your question. ;-) Mom to Kendra, 13 CHARGE, , 19 and Camille, 22 Portland, OR Quote Link to comment Share on other sites More sharing options...
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