Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Does she move much when she sleeps? If not, you could try an ambi bag and mask pointed towards her face. Lori Myers -------------- Original message -------------- > > > Sara just got night time oxygen for her desats & apnea. (She does > not have a trach). She only needs .5 liters, and can go up to 1.5 if > needed. It is delivered through those nose tubes w/ the prongs... > atleast thats the idea. She is so defensive of her mouth and nose > from all the scopes and surgeries that she fights me while even > sound asleep to remove it. I dont know what to call and ask for > that will work better- have any suggestions? > Thanks! > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information > will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 When Dylan does his breathing treatments he holds the mask over his own nose and mouth. He much prefers this to the tip that goes in his mouth. I have no idea how he would do with it all night long, but you could at least try. Kim > > > Sara just got night time oxygen for her desats & apnea. (She does > not have a trach). She only needs .5 liters, and can go up to 1.5 if > needed. It is delivered through those nose tubes w/ the prongs... > atleast thats the idea. She is so defensive of her mouth and nose > from all the scopes and surgeries that she fights me while even > sound asleep to remove it. I dont know what to call and ask for > that will work better- have any suggestions? > Thanks! > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 - Before Ethan was trached, we first tried " blow by oxygen " (what Lori is referring to) but we were constantly going into his room to move it because he would roll over so much. Then we tried the nasal cannula, but that was shortterm too because he kept pulling it off. Thankfully, his trach was placed soon afterwards so it wasn't an issue any longer. Does she have a pulmonologist that you could call to ask? If you have a respiratory therapist for your medical equipment company, you can get ideas from them maybe. Sorry I can't be of more help. Jody myerstl@... wrote: Does she move much when she sleeps? If not, you could try an ambi bag and mask pointed towards her face. Lori Myers -------------- Original message -------------- > > > Sara just got night time oxygen for her desats & apnea. (She does > not have a trach). She only needs .5 liters, and can go up to 1.5 if > needed. It is delivered through those nose tubes w/ the prongs... > atleast thats the idea. She is so defensive of her mouth and nose > from all the scopes and surgeries that she fights me while even > sound asleep to remove it. I dont know what to call and ask for > that will work better- have any suggestions? > Thanks! > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information > will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Jody, She fights me with her nebulizer mask during breathing treatments- but might tolerate that while she's asleep better than the nasal tubes. I like to know what I'm talking about before I call those guys- besides y'all are the real experts! Tonight I'll try feeding it through her neb mask and see how that works, and call tomorrow! thanks! > Does she move much when she sleeps? If not, you could try an ambi bag and mask pointed towards her face. > > Lori Myers > > -------------- Original message -------------- > > > > > > > Sara just got night time oxygen for her desats & apnea. (She does > > not have a trach). She only needs .5 liters, and can go up to 1.5 if > > needed. It is delivered through those nose tubes w/ the prongs... > > atleast thats the idea. She is so defensive of her mouth and nose > > from all the scopes and surgeries that she fights me while even > > sound asleep to remove it. I dont know what to call and ask for > > that will work better- have any suggestions? > > Thanks! > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute membership in the > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@c... or visit > > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > > information and membership, please visit http://www.chargesyndrome.ca, or email > > info@c... > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information > > will be available at www.chargesyndrome.org or by calling 1-800- 442-7604. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 is the night time oxygen a cpap thats what i had i had the mask but then im older and can keep it on love ellen > > Sara just got night time oxygen for her desats & apnea. (She does > not have a trach). She only needs .5 liters, and can go up to 1.5 if > needed. It is delivered through those nose tubes w/ the prongs... > atleast thats the idea. She is so defensive of her mouth and nose > from all the scopes and surgeries that she fights me while even > sound asleep to remove it. I dont know what to call and ask for > that will work better- have any suggestions? > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 , You are doing a beautiful job staying on top of all the details. Our daughter had PDA also and it was closed when she had her double aortic arch surgery. We hadn't been informed of it prior to that time. It wouldn't hurt to discuss possible double aortic arch with the team. However, I have only heard of a few children with CHARGE that have this condition and an even smaller number that have had surgical repair. I have wondered why Kendra has it if it is so seemingly rare. It caused a definite stenosis in the trachea and in her case it was subglottic. Following surgery at one week of age for a small H-type TE fistula, Kendra also had swelling and numerous intubations. As the swelling didn't reduce, a trach was needed at two weeks of age. I think if the double aortic arch had been identified and repaired, the trach would have been either unnessessary or needed for a much shorter time. Kendra also has problems with her tongue. Still unfortunately. Best of luck finding a wonderful ENT closer to home for basic visits. I am envious you live close enough to Dr. Cotton to go there at least sometimes. And hoooraaayyyy that your insurance covers it. :-) wendy > > > > > > Sara just got night time oxygen for her desats & apnea. (She > does > > > not have a trach). She only needs .5 liters, and can go up to > 1.5 if > > > needed. It is delivered through those nose tubes w/ the > prongs... > > > atleast thats the idea. She is so defensive of her mouth and > nose > > > from all the scopes and surgeries that she fights me while even > > > sound asleep to remove it. I dont know what to call and ask for > > > that will work better- have any suggestions? > > > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 , thanks! I'll keep you posted when we go to the cardiologist. How does Kendra have problems with her tongue? Is it low tone like Sara? We have been rubbing it with a little brush- its hard to work that in as much as we should though. She also has a " chewy tube " - its a red ruber thing for her to mouth and chew. Sara's sticks out all the time. I see that she signs, but is Kendra's speech effected by it? I hope I will get the chance to meet you both at the conference! Mark mom to Sara 11 months > > > > > > > > Sara just got night time oxygen for her desats & apnea. (She > > does > > > > not have a trach). She only needs .5 liters, and can go up to > > 1.5 if > > > > needed. It is delivered through those nose tubes w/ the > > prongs... > > > > atleast thats the idea. She is so defensive of her mouth and > > nose > > > > from all the scopes and surgeries that she fights me while > even > > > > sound asleep to remove it. I dont know what to call and ask > for > > > > that will work better- have any suggestions? > > > > Thanks! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Kendra also has problems with her tongue. Still unfortunately. wendy again demonstrated tongue problems this weekend. She lost a tooth on the left side and had problems chewing on that side - it bothered her. I told her to chew on the right side and she had to reach in her mouth with her finger and move the food over! What I think is fascinating is that the left side of her body is more effected by CHARGE than her right. Yet it appears she can't move things from left to right in her mouth. Also, it seems that she chews better on the left than the right. Can't get her tongue far enough to the left to move the food over? Doesn't have the coordination? Doesn't have the strength? I just don't know. Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 , Yes, do let me know about your cardiology appointment! :-) Kendra's tongue used to stick out frequently. It seemed to start when she as about 4 and lasted until she was about 7 years old. The only thing I can think changed it and helped her stop was her feeding therapy and the change from g-tube to oral eating. She seemed to develop over-all better tone at about that time, though, so I'm not really certain if it was the feeding that helped. During the time she also had 'chewy' toys. Her tongue did not stick out as a tiny baby. I think you are smart to use the therapy toys at this time. On another list I have been reading about and have been reminded of Sara Rosenfeld , Speech and Language therapist who has impressive oral motor therapies. She is located in Arizona with the possibility of clinics all of the country and world when a certain number of people request her service. There are therapists trained in her protocols in a number of locations, also. She works on oral motor strength and does address tongues protruding. She has spoken at CHARGE conferences before and I see that on her web page she is scheduled to present this year in Florida. I'm sure others will chime in about whether the approach has helped their child to limit tongue protrusion or not. Here are a couple of tools she uses in regard to tongue therapy: http://shop.azstarnet.com/cgi-bin/iti.storefront/421ab6f001bd779c271da9c5367 20726/Search/Run And you can read lots more about her approaches here: http://shop.azstarnet.com/cgi-bin/iti.storefront For Kendra, the tongue difficulty persists in that she still sometimes has her tongue flop back in her throat as she sleeps. She then moves or turns over to improve her airway. But she never sticks her tongue out anymore. Kendra's speech is affected by the trach she had for 3 years, her oral motor strength, dysarthria, profound deafness and verbal apraxia. If she was younger, I would obtain direct therapy addressing apraxia for her. Those are the factors that I am aware of and there could be other issues as well. She started to speak a little when she was about 3 years old, but never progressed. We tried direct oral methods and we tried cued speech. Language in general has been difficult for her whether it is oral or signed. The last many years we have focused solely on signing as that seems to be her preferred method and she is better at that than oral skills. But even with signing, Kendra is affected by limb apraxia which is a motor planning difficulty. She has made a lot of strides, but it has been difficult obtaining the correct diagnosis and finding treatment approaches that help and encourage her. She also has language disorder in that typing and reading came before speaking or signing. We are grateful for her reading skills, but would really like to see communication in sign become fluid and easy for her. The limb apraxia is greatly to blame, but is treatable, and visual processing difficulties which are not completely understood also contribute. The visual issues are probably related to facial nerves and to vestibular issues. Kendra has small colobomas which should not affect her ability to access visual information and don't explain the difficulties she has. I, too, hope to meet you in Florida. Mom to Kendra, 18, CHARGE, , 24 and Camille, 27 (yow, how did that happen so fast??) _____ From: Mark Sent: Sunday, February 20, 2005 6:56 AM To: CHARGE Subject: Re: Night time oxygen , thanks! I'll keep you posted when we go to the cardiologist. How does Kendra have problems with her tongue? Is it low tone like Sara? We have been rubbing it with a little brush- its hard to work that in as much as we should though. She also has a " chewy tube " - its a red ruber thing for her to mouth and chew. Sara's sticks out all the time. I see that she signs, but is Kendra's speech effected by it? I hope I will get the chance to meet you both at the conference! Mark mom to Sara 11 months Quote Link to comment Share on other sites More sharing options...
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