Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Jody, Just to put in my two cents. ( 20yrs) had her adnoids removed but the ENT left her tonsils. He said she needed them to fight infection. This ENT is the best and head of the department at her hospital. They are a little larger than normal but he wants them to stay in. had a trach from 6 months to almost 4 years. She still gets croup like attacks sometimes when she has a respiratory infection and uses a home nebulizer with meds. This happen maybe once or twice a year. She isn't prone to strep throat and hasn't had tonsilitis since she was about 5 years old. I know each CHARGE kids is very different but I though I would share 's 20 years with large tonsils. Lynn Tonsil removal I know many CHARGErs have had their tonsils/adnoids removed for breathing purposes. Has anyone noticed an improvement in swallowing with the tonsils removed? Or has there been any adverse affects such as increased occurrence of aspiration with them removed? Ethan's tonsils are very large and his ENT says that they will need to be removed eventually. Because he has a trach, we don't necessarily need to do it now, but want to know if there are any benefits of doing it sooner than later. We could combine the removal with his routine bronchoscopy so putting him under just for this is not an issue. Any input would be appreciated! Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs --------------------------------- Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Our son Josh is Trached and we noticed he wasn't tolerating his passy muir valve, turns out his tonsils were huge. We had them taken out (and piggy backed a few other procedure while we could). His swallowing has gotten better and he tolerates his valve a little better too. It was a positive experience for us. I hope this helps. Bernie, Mom of 5 cHARGEr, Amber 8 Jody Wolfe wrote: I know many CHARGErs have had their tonsils/adnoids removed for breathing purposes. Has anyone noticed an improvement in swallowing with the tonsils removed? Or has there been any adverse affects such as increased occurrence of aspiration with them removed? Ethan's tonsils are very large and his ENT says that they will need to be removed eventually. Because he has a trach, we don't necessarily need to do it now, but want to know if there are any benefits of doing it sooner than later. We could combine the removal with his routine bronchoscopy so putting him under just for this is not an issue. Any input would be appreciated! Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs --------------------------------- Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 had her tonsils removed last July. While the recovery was hell (tonsillectomy, choanal atresia surgery, sinus surgery) I think the surgery was beneficial to her. She doesn't snore now and she eats and drinks more (not sure if this is tonsil related - but is sounds good!). If nothing els, it eliminated the big infected things in her throat and she has more room now! Lori Myers -------------- Original message -------------- > > I know many CHARGErs have had their tonsils/adnoids removed for breathing > purposes. Has anyone noticed an improvement in swallowing with the tonsils > removed? Or has there been any adverse affects such as increased occurrence of > aspiration with them removed? > > Ethan's tonsils are very large and his ENT says that they will need to be > removed eventually. Because he has a trach, we don't necessarily need to do it > now, but want to know if there are any benefits of doing it sooner than later. > We could combine the removal with his routine bronchoscopy so putting him under > just for this is not an issue. > > Any input would be appreciated! > > Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs > > > --------------------------------- > Celebrate Yahoo!'s 10th Birthday! > Yahoo! Netrospective: 100 Moments of the Web > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Jody, Patty had her tonsils removed becasue of continuous infections. We were told she could never have her adnoids out becasue of her submucus cleft but for the life of me I can't remember the reason. She had it done with her last coanal atresia repair. If it was her nose or the tonsils I don't know but things finally worked better for her. She learned how to swallow better and liquids didn't come out her nose anymore. Patty didn't have a trach so that's a whole different issue. Good luck with your decision. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 my sleep doctors pushed for tonsil removal but the ent and the ent befor him say it could do stuff to my cleft dont know what exactly think they said itd undo the palate repair and stuff but it does get tossed round one ent left so his replacemtn now sees me hes great to but is still against tonisl removal and the sleep doctors think its better well just thought id add my thlughts to help ellen howe > had her tonsils removed last July. While the recovery was hell (tonsillectomy, choanal atresia surgery, sinus surgery) I think the surgery was beneficial to her. She doesn't snore now and she eats and drinks more (not sure if this is tonsil related - but is sounds good!). If nothing els, it eliminated the big infected things in her throat and she has more room now! > > Lori Myers > > -------------- Original message -------------- > > > > > I know many CHARGErs have had their tonsils/adnoids removed for breathing > > purposes. Has anyone noticed an improvement in swallowing with the tonsils > > removed? Or has there been any adverse affects such as increased occurrence of > > aspiration with them removed? > > > > Ethan's tonsils are very large and his ENT says that they will need to be > > removed eventually. Because he has a trach, we don't necessarily need to do it > > now, but want to know if there are any benefits of doing it sooner than later. > > We could combine the removal with his routine bronchoscopy so putting him under > > just for this is not an issue. > > > > Any input would be appreciated! > > > > Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs > > > > > > --------------------------------- > > Celebrate Yahoo!'s 10th Birthday! > > Yahoo! Netrospective: 100 Moments of the Web > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 's tonsils and adenoids were removed around the same time she was decannulated (trached from 3 omths to 3 years old). The ENT said they were huge. also has a small submucous cleft, and had bilateral chonal atresia (not boney) and repaired in a transpalatal procedure (through the roof palatte, not the nose) only once. Only one atresia repair due to the way it was done, or the fact she had only fibrous tissue...you guess. Having said all that, still requires CPAP at night for obstructive and central apnea. But, obviously, our ENT had no problem removing both tonsils and adenoids. Personally, at age 42 I still have mine and wish I didn't. I know they are supposed to help with infection - and they may have as a child/adolescent - but now they are a pain in the butt! I find that my tonsils just exacerbate breathing issues when I have a sinus infection. Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: Tonsil removal had her tonsils removed last July. While the recovery was hell (tonsillectomy, choanal atresia surgery, sinus surgery) I think the surgery was beneficial to her. She doesn't snore now and she eats and drinks more (not sure if this is tonsil related - but is sounds good!). If nothing els, it eliminated the big infected things in her throat and she has more room now! Lori Myers -------------- Original message -------------- > > I know many CHARGErs have had their tonsils/adnoids removed for breathing > purposes. Has anyone noticed an improvement in swallowing with the tonsils > removed? Or has there been any adverse affects such as increased occurrence of > aspiration with them removed? > > Ethan's tonsils are very large and his ENT says that they will need to be > removed eventually. Because he has a trach, we don't necessarily need to do it > now, but want to know if there are any benefits of doing it sooner than later. > We could combine the removal with his routine bronchoscopy so putting him under > just for this is not an issue. > > Any input would be appreciated! > > Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs > > > --------------------------------- > Celebrate Yahoo!'s 10th Birthday! > Yahoo! Netrospective: 100 Moments of the Web > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 My son Liam (2yrs CHARGER) had his tonsils and adenoids removed on the 20th of January. It was a success. Liam had obstructive sleep apnea and used to use a CPAP machine. He rarely needs it now. He had a lot of pneumonias and we were not able to put him through a swallow study yet. At the moment he doesn't have anything by mouth and I hope he will do better swallowing solids. He also went through a few other procedures that day, besides T & A he had a bronchoscopy, direct laringoscopy and endoscopy. My general rule is " why wait? " No one wanted to take him to the OR. But every other doctor said that " when he goes under anesthesia... " he/she would like to do this or that. I approached the ENT and asked if she would do the exploratory laringoscopy with potential for removal of his tonsils. I am glad all went well. I owe you news on his swallowing. All the best Eneida > I know many CHARGErs have had their tonsils/adnoids removed for breathing purposes. Has anyone noticed an improvement in swallowing with the tonsils removed? Or has there been any adverse affects such as increased occurrence of aspiration with them removed? > > Ethan's tonsils are very large and his ENT says that they will need to be removed eventually. Because he has a trach, we don't necessarily need to do it now, but want to know if there are any benefits of doing it sooner than later. We could combine the removal with his routine bronchoscopy so putting him under just for this is not an issue. > > Any input would be appreciated! > > Jody - mom to Ethan - 2 3/4 yrs ChARGE and - 5.5 yrs > > > --------------------------------- > Celebrate Yahoo!'s 10th Birthday! > Yahoo! Netrospective: 100 Moments of the Web > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Jody, Removing Bryce's tonsils was the best thing we did for him medically and we did it about 2 1/2. He went from being a child that was in and out of the intensive care consantly to a relatively healthy child. He got off oxygen, drastically reduced his suctioning needs and dramatically improved his airway. In hindsight, even our ENT apologized for not doing it sooner. I think in our case, we could of avoided some major airway crisis and some bouts with pneumonia. But the doctors were divided on whether to do the surgery because he had already been through so much! Oh the benefit of hindsight... Good luck with your decision. Deedee,Mom to Bryce who turned 8 last weekend Quote Link to comment Share on other sites More sharing options...
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