Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 e, Lately Cameron has been vomiting and it seems real phlegmy and stringy and it is gagging him. Like he has tons of drainage or something and his nose has seemed a little stuffy but not running. Anyway, when you said Chelsea has problems with mucous because of swallowing difficulty it totally rang a bell. Does what I described sound familiar? I thought the mucous was strange but maybe he is gagging on it and that is part of the problem. He has oral tone issues. We are going to an otolaryngologist (ENT) in Feb at Children's hospital just trying to gather info before the visit. Thanks, -----Original Message-----From: jayvelde@... Sent: Friday, January 10, 2003 3:45 PMTo: Mito Subject: Re: Re: New-thanksHi e, Chelsea showed no apparent signs of mito at birth, but I have an inkling it was always there. At 7 mos her ped became mildly concerned over her lack of milestones. Lab tests showed nothing and at first she was thought to have a benign neruological condition. It was after she passed 2 and had not made any milestones, her neuro brought up mito. SHe had a muscle/skin biopsy done locally. The results were inconclusive, but indicated a mitochondrial cytopathy, which is very general.Chelsea has the same problem with mucous, it has improved over time, since her gtube was placed. She was sick recently and it still having a lot of residual drainage and is coughing quite a bit. It is a frustrating battle, but is a part of her swallowing dysfunction. All we can do is help keep her clear when she cannot. She takes Zyrtec (antihistimine) daily and she gets chest clap therapy 2x's a day with Flovent and Nasonex, and Albuterol if she is extra "cruddy". I feel the regular chest clap therapy along with a suction forced cough after has helped her to strengthen her cough. As well as being tube fed .That is a tough decision and a whole other story. I will share it with you another time, if you like. But believe me, I understand exactly how you feel about not wanting to get a tube. It's not easy. I wish you well!e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 e, Lately Cameron has been vomiting and it seems real phlegmy and stringy and it is gagging him. Like he has tons of drainage or something and his nose has seemed a little stuffy but not running. Anyway, when you said Chelsea has problems with mucous because of swallowing difficulty it totally rang a bell. Does what I described sound familiar? I thought the mucous was strange but maybe he is gagging on it and that is part of the problem. He has oral tone issues. We are going to an otolaryngologist (ENT) in Feb at Children's hospital just trying to gather info before the visit. Thanks, -----Original Message-----From: jayvelde@... Sent: Friday, January 10, 2003 3:45 PMTo: Mito Subject: Re: Re: New-thanksHi e, Chelsea showed no apparent signs of mito at birth, but I have an inkling it was always there. At 7 mos her ped became mildly concerned over her lack of milestones. Lab tests showed nothing and at first she was thought to have a benign neruological condition. It was after she passed 2 and had not made any milestones, her neuro brought up mito. SHe had a muscle/skin biopsy done locally. The results were inconclusive, but indicated a mitochondrial cytopathy, which is very general.Chelsea has the same problem with mucous, it has improved over time, since her gtube was placed. She was sick recently and it still having a lot of residual drainage and is coughing quite a bit. It is a frustrating battle, but is a part of her swallowing dysfunction. All we can do is help keep her clear when she cannot. She takes Zyrtec (antihistimine) daily and she gets chest clap therapy 2x's a day with Flovent and Nasonex, and Albuterol if she is extra "cruddy". I feel the regular chest clap therapy along with a suction forced cough after has helped her to strengthen her cough. As well as being tube fed .That is a tough decision and a whole other story. I will share it with you another time, if you like. But believe me, I understand exactly how you feel about not wanting to get a tube. It's not easy. I wish you well!e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 e, Lately Cameron has been vomiting and it seems real phlegmy and stringy and it is gagging him. Like he has tons of drainage or something and his nose has seemed a little stuffy but not running. Anyway, when you said Chelsea has problems with mucous because of swallowing difficulty it totally rang a bell. Does what I described sound familiar? I thought the mucous was strange but maybe he is gagging on it and that is part of the problem. He has oral tone issues. We are going to an otolaryngologist (ENT) in Feb at Children's hospital just trying to gather info before the visit. Thanks, -----Original Message-----From: jayvelde@... Sent: Friday, January 10, 2003 3:45 PMTo: Mito Subject: Re: Re: New-thanksHi e, Chelsea showed no apparent signs of mito at birth, but I have an inkling it was always there. At 7 mos her ped became mildly concerned over her lack of milestones. Lab tests showed nothing and at first she was thought to have a benign neruological condition. It was after she passed 2 and had not made any milestones, her neuro brought up mito. SHe had a muscle/skin biopsy done locally. The results were inconclusive, but indicated a mitochondrial cytopathy, which is very general.Chelsea has the same problem with mucous, it has improved over time, since her gtube was placed. She was sick recently and it still having a lot of residual drainage and is coughing quite a bit. It is a frustrating battle, but is a part of her swallowing dysfunction. All we can do is help keep her clear when she cannot. She takes Zyrtec (antihistimine) daily and she gets chest clap therapy 2x's a day with Flovent and Nasonex, and Albuterol if she is extra "cruddy". I feel the regular chest clap therapy along with a suction forced cough after has helped her to strengthen her cough. As well as being tube fed .That is a tough decision and a whole other story. I will share it with you another time, if you like. But believe me, I understand exactly how you feel about not wanting to get a tube. It's not easy. I wish you well!e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Thanks for the reply. I may try the saline if he will let me and does not gag on it. About the nissen. They decided he did not need it when he had the g-tube placed. But do they only do them for aspiration? How about someone who vomits daily? He has been having increased vomiting problems (had them since birth but lately they are worse) and he has severe esophagitis. Can they do anything to help with the vomiting? Thanks, Riley -----Original Message-----From: jayvelde@... Sent: Sunday, January 12, 2003 12:34 PMTo: Mito Subject: Re: Re: New-thankseYes, , that actually sounds very familiar! Chelsea is still dealing with some residual mucous, and it drains right down the back of her throat. So she has been sounding wet a lot lately and coughing on it quite a bit. She just finished a round of antibiotics because her drainage had been so thick and was not clear. I find saline nose spray is very helpful when stuff is thick. I just give it to her sitting up and then suction her as she coughs it up. The spray also helps when her nasal passages sound dry. It is a constant battle, but since she is not getting sick from it, her drs do not want her Robinul or lasix or anything like that.She does not vomit because of her nissen, but I do notice that the thicker the secretions are, the more tendecy she has to wretch when she is suctioned.e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Thanks for the reply. I may try the saline if he will let me and does not gag on it. About the nissen. They decided he did not need it when he had the g-tube placed. But do they only do them for aspiration? How about someone who vomits daily? He has been having increased vomiting problems (had them since birth but lately they are worse) and he has severe esophagitis. Can they do anything to help with the vomiting? Thanks, Riley -----Original Message-----From: jayvelde@... Sent: Sunday, January 12, 2003 12:34 PMTo: Mito Subject: Re: Re: New-thankseYes, , that actually sounds very familiar! Chelsea is still dealing with some residual mucous, and it drains right down the back of her throat. So she has been sounding wet a lot lately and coughing on it quite a bit. She just finished a round of antibiotics because her drainage had been so thick and was not clear. I find saline nose spray is very helpful when stuff is thick. I just give it to her sitting up and then suction her as she coughs it up. The spray also helps when her nasal passages sound dry. It is a constant battle, but since she is not getting sick from it, her drs do not want her Robinul or lasix or anything like that.She does not vomit because of her nissen, but I do notice that the thicker the secretions are, the more tendecy she has to wretch when she is suctioned.e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Hi , you are very welcome! Chelsea never had a big problem with vomiting, and did not show reflux on her upper GI. The culture they took from her first pneumonia led drs to believe she had aspirated her stomach contents (also the fact she was perfectly fine in the wee hours of the am, but deathly ill a few hrs later). When we asked for the gtube to be placed, the drs decided to do a nissen at the same time. I had NO clue what a nissen was and had a " small " episode until it was thouroughly explained to me what a nissen was! Even though the upper GI had been done after her first pneum, they assumed she was chronically refluxing. I did get to read the surgeons report from her surgery, and she did have evidence of esophigitis, but she'd also had an ng tube in for several weeks. Since the nissen was done, she has not burped or vomited, so it has been doing it's job well! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Hi , you are very welcome! Chelsea never had a big problem with vomiting, and did not show reflux on her upper GI. The culture they took from her first pneumonia led drs to believe she had aspirated her stomach contents (also the fact she was perfectly fine in the wee hours of the am, but deathly ill a few hrs later). When we asked for the gtube to be placed, the drs decided to do a nissen at the same time. I had NO clue what a nissen was and had a " small " episode until it was thouroughly explained to me what a nissen was! Even though the upper GI had been done after her first pneum, they assumed she was chronically refluxing. I did get to read the surgeons report from her surgery, and she did have evidence of esophigitis, but she'd also had an ng tube in for several weeks. Since the nissen was done, she has not burped or vomited, so it has been doing it's job well! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Hi , you are very welcome! Chelsea never had a big problem with vomiting, and did not show reflux on her upper GI. The culture they took from her first pneumonia led drs to believe she had aspirated her stomach contents (also the fact she was perfectly fine in the wee hours of the am, but deathly ill a few hrs later). When we asked for the gtube to be placed, the drs decided to do a nissen at the same time. I had NO clue what a nissen was and had a " small " episode until it was thouroughly explained to me what a nissen was! Even though the upper GI had been done after her first pneum, they assumed she was chronically refluxing. I did get to read the surgeons report from her surgery, and she did have evidence of esophigitis, but she'd also had an ng tube in for several weeks. Since the nissen was done, she has not burped or vomited, so it has been doing it's job well! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, They mentioned it at the time right before surgery and did not think it was necessary. I wish I had known more about it at the time I probably would have pushed for it. I hate the thought of another surgery for him. However, we did discuss the fact that if he ever did need another surgery maybe it could be performed in Atlanta and a muscle biopsy done at the same time. not that I hope for that to happen but if it has to then we may get more answers. Of course Cameron is already so different in many ways that they still may not be able to pinpoint a diagnosis. He is general is believed to have a mitochondrial cytopathy. My advise is talk to the doctors about what criteria they are using to determine if she needs a fundo. I have heard good and bad things about them but I do wish Cam had one. It may make his life and mine easier. Also, I think some of his esophagus problems would go away. -----Original Message----- Sent: Monday, January 13, 2003 4:13 PMTo: Mito Subject: Re: New-thankseMy doctor told me that if Abby were to vomit excessively (she doesn't) that they could do a surgery called a fundo (the proper word is longer, this is just the abbreviated form). He said that vomitting is not a protective mechanism in this instance and that it needs to be stopped. If your son is vomitting daily I definately think that you should get that checked out. I am surprised that your docs didn't recommend the fundo with the g-tube. That must be awefully painful for Cameron. e, mom to Abby 10 mos.> Thanks for the reply. I may try the saline if he will let me and does> not gag on it. > About the nissen. They decided he did not need it when he had the> g-tube placed. But do they only do them for aspiration? How about> someone who vomits daily? He has been having increased vomiting> problems (had them since birth but lately they are worse) and he has> severe esophagitis. Can they do anything to help with the vomiting?> Thanks,> Riley> Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, They mentioned it at the time right before surgery and did not think it was necessary. I wish I had known more about it at the time I probably would have pushed for it. I hate the thought of another surgery for him. However, we did discuss the fact that if he ever did need another surgery maybe it could be performed in Atlanta and a muscle biopsy done at the same time. not that I hope for that to happen but if it has to then we may get more answers. Of course Cameron is already so different in many ways that they still may not be able to pinpoint a diagnosis. He is general is believed to have a mitochondrial cytopathy. My advise is talk to the doctors about what criteria they are using to determine if she needs a fundo. I have heard good and bad things about them but I do wish Cam had one. It may make his life and mine easier. Also, I think some of his esophagus problems would go away. -----Original Message----- Sent: Monday, January 13, 2003 4:13 PMTo: Mito Subject: Re: New-thankseMy doctor told me that if Abby were to vomit excessively (she doesn't) that they could do a surgery called a fundo (the proper word is longer, this is just the abbreviated form). He said that vomitting is not a protective mechanism in this instance and that it needs to be stopped. If your son is vomitting daily I definately think that you should get that checked out. I am surprised that your docs didn't recommend the fundo with the g-tube. That must be awefully painful for Cameron. e, mom to Abby 10 mos.> Thanks for the reply. I may try the saline if he will let me and does> not gag on it. > About the nissen. They decided he did not need it when he had the> g-tube placed. But do they only do them for aspiration? How about> someone who vomits daily? He has been having increased vomiting> problems (had them since birth but lately they are worse) and he has> severe esophagitis. Can they do anything to help with the vomiting?> Thanks,> Riley> Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, I am wondering why they did not consider the nissen more carefully when they placed Cameron's tube? The surgeon mentioned it, but said it was not necessary. I did have an idea what it was but thought, oh well, if he does not think we need it then that is one less thing to put Cameron through. Now, I am wishing he had one so that he would not vomit and therefore not have severe esophagitis and an abnormal esophagial biopsy. We will see in time. I do not think the GI dept at our Children's hospital is following Cameron's case as closely as they should, but then again in this case I have not been a squeaky wheel. I guess it is time to gear up for another health care marathon:) Thanks for sharing, -----Original Message-----From: jayvelde@... Sent: Monday, January 13, 2003 1:05 PMTo: Mito Subject: Re: Re: New-thankseHi , you are very welcome! Chelsea never had a big problem with vomiting, and did not show reflux on her upper GI. The culture they took from her first pneumonia led drs to believe she had aspirated her stomach contents (also the fact she was perfectly fine in the wee hours of the am, but deathly ill a few hrs later). When we asked for the gtube to be placed, the drs decided to do a nissen at the same time. I had NO clue what a nissen was and had a "small" episode until it was thouroughly explained to me what a nissen was! Even though the upper GI had been done after her first pneum, they assumed she was chronically refluxing. I did get to read the surgeons report from her surgery, and she did have evidence of esophigitis, but she'd also had an ng tube in for several weeks. Since the nissen was done, she has not burped or vomited, so it has been doing it's job well!e, Chelsea's mom (nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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