Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 Ruth, We had 's taken out to try to free up some airway space back there. She wasn't on CPAP, just congested and gunky all of the time. We didn't think about her having trouble, but she did have a rough time. Her problem wasn't swelling, but she had gotten used to the huge tonsils holding her tongue forward. Once they were out, her tongue kept flopping back over her airway and she couldn't breath. She was on the vent for 9 days. The ENT almost trached her, but we opted to give her a little time (the 9 days) to see if she would realize that she needed to keep her tongue forward. She did and has done fine. The end result has been good. She was a little quieter with her breathing after they were removed, but getting to that point was very difficult. I think I would make the same choice today but knowing of the trouble that she had, I would have to think long and hard about it. I don't think this helped, but I wanted to let you know what Jess went through and she was a little older. Sheryl, Mom to Mitch 14 and 13 CHARGE Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 Ruth, The only contraindication of a T & A that I know of is an adnoidectomy in a kid with a cleft palate.. we have been told by several plastics guys, ENTs and SPs to never have Aari's adnoids removed as it can cause a worsening or even loss of intelligible speech. Casey Mom to Dawn 21 HH, Ken 11 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 August 18, 2000 Report Share Posted August 18, 2000 JIllian's tonsils are huge. When she had her dental work done, the anesthesia guy asked about her tonsils. He said they are so big, they almost touch. I said, " I know, but her ENT says to leave her t & a alone. " ..... I always think Jillian has a throat problem when I see her swollen tonsils, but I don't think they are swollen, I just think that is their size. After what Casey says about speech being affected, I must for the first time agree with my ENT. That's the last thing I want affected in her. Foley Mom to 5 (CHARGEr in heaven) and Jillian 2 1/2 cHaRGE t & a removal question > I've been reading some of the tonsil advice given lately and I have a > question regarding it also. Does anyone out there NOT recommend t & A removal? > is on cpap and my pulmonologist thinks his tonsils are huge. He > always sounds congested due to the clutter back there and breathes quite > rapidly. My ENT doc, however, thinks he's too young and has told me that the > risk is too hi ( has always had complications after surgeries-ie > respiratory failure issues) and that he doesn't want to do it until he's > older-especially if he's doing fine on cpap, which he is. > I would love to get him off cpap if that would do it, but don't want to risk > a complication or possibly needing a trach, (he told me that if he has too > much swelling, they may need to go so far as to trach him) But, I would love > to get those out now if we can, but....the hesitation goes on and on. See my > point? Did any of you feel like it just was not worth it and ended up > w/complications or even bigger problems than you started with? I am trying > to weigh out benefits vs risks. BTW, I know some of you have had t & a removal > and you're STILL on cpap, so I'm fully aware that could happen too! > Thanks! > > Ruth in SLC > mom to 25mos CHARGEr, waiting adoptive parent, wife to Mike > ________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 Hi! had his T & A at 23 months of age. Cheryl, , (6), (4, CHaRGE) MI >>> erniencharge@... 08/17/00 11:24PM >>> I've been reading some of the tonsil advice given lately and I have a question regarding it also. Does anyone out there NOT recommend t & A removal? is on cpap and my pulmonologist thinks his tonsils are huge. He always sounds congested due to the clutter back there and breathes quite rapidly. My ENT doc, however, thinks he's too young and has told me that the risk is too hi ( has always had complications after surgeries-ie respiratory failure issues) and that he doesn't want to do it until he's older-especially if he's doing fine on cpap, which he is. I would love to get him off cpap if that would do it, but don't want to risk a complication or possibly needing a trach, (he told me that if he has too much swelling, they may need to go so far as to trach him) But, I would love to get those out now if we can, but....the hesitation goes on and on. See my point? Did any of you feel like it just was not worth it and ended up w/complications or even bigger problems than you started with? I am trying to weigh out benefits vs risks. BTW, I know some of you have had t & a removal and you're STILL on cpap, so I'm fully aware that could happen too! Thanks! Ruth in SLC mom to 25mos CHARGEr, waiting adoptive parent, wife to Mike ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 I do not support having both t & a taken out. I have had such awful allergies and nasal problems since I had that done. I would really check into it before you get it done. , Eileen CHArgE 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 HI, Id' like to know of all the T & A removals how many have trachs and what are the improvements? Thanks, BEtsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Case, What does the cleft have to do with adenoids. I'm not understanding the psyiology of it all I guess. Can you explain it? Thanks, Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 whenever I see this subject line I LOL--there IS another " t & a " you know... :-) Barbra M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Betsy, With a cleft that involves the soft palate a lot of the time it's the adenoids being there that lets the soft palate close off for a less nasal voice and better projection of explosives sounds. They are in the sinus just above the soft palate. Casey Mom to Dawn 21 HH, Ken 11 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 August 21, 2000 Report Share Posted August 21, 2000 Casey, Thanks for the info. 's cleft of the soft is so small that I wonder if this would be an issue for him.... Betsy Quote Link to comment Share on other sites More sharing options...
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