Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Dear CHARGE group, We are parents of a 5-month-old baby called na who is being treated and studied for her Charge Syndrome and metabolic problems. She's been detected a severe reflux and physicians are evaluating the possibility of practising a gastrostomy and a Nissen surgery. At this moment she is fed by tube. We would like to know if other children with this syndrome have undergone these surgeries, what were the results, and if Nissen can solve the reflux issue without performing the gastrostomy. It's been quite hard for us to help her, since doctors mentioned CHARGE syndrome at the beginning, but did not have much information about it, so we were encouraged to feed her with a baby bottle and it was a difficult task for her and for us. One nurse who takes care of na and has already looked after another child with CHARGE, encourages us to ask and find alternatives. I would be extremely grateful if you could provide us with some material for reading or consulting. And THANK YOU for publishing the manual: It brought sunshine to na's life. Sincerely yours, Vanesa & Sebastián Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 My son Ben (13 month old CHARGEr) had a GTube and Nissen placed at 4 months of age. He had trouble tolerating large volumes of food and since he has a trach, the doctors wanted to make sure he didn't asperate. I'm a big fan of the Gtube, and not a big fan of the Nissen. For us, it didn't help him. He can vomit whenever he wants and he still has trouble tolerating large volumes. Actually, I think he has more trouble now than before because the Nissen made his stomach even smaller than it was to start with. He gets 13 small feeds over the pump at a very slow rate every day. His Nissen is still in tack, which is good... but if it ever came undone, we wouldn't have the procedure repeated. I know of lots of people who have said the Nissen is a lifesaver, but for us it didn't help. I hope this helps. Good luck. If you do get the Nissen, definitely ask about having it done laparoscopy. Amy Russo > > Dear CHARGE group, > We are parents of a 5-month-old baby called na who is > being treated and studied for her Charge Syndrome and > metabolic problems. > > She's been detected a severe reflux and physicians are > evaluating the possibility of practising a gastrostomy > and a Nissen surgery. At this moment she is fed by tube. > > We would like to know if other children with this syndrome > have undergone these surgeries, what were the results, > and if Nissen can solve the reflux issue without > performing the gastrostomy. > > It's been quite hard for us to help her, since doctors > mentioned CHARGE syndrome at the beginning, but did not > have much information about it, so we were encouraged to > feed her with a baby bottle and it was a difficult task > for her and for us. > > One nurse who takes care of na and > has already looked after another child with CHARGE, > encourages us to ask and find alternatives. > > I would be extremely grateful if you could provide us with > some material for reading or consulting. And THANK YOU > for publishing the manual: It brought sunshine to > na's life. > > Sincerely yours, > > Vanesa & Sebastián > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Sebastian, What do you think happened at 3 months of age? Why did she stop being able to drink her baby bottle? wendy Re: Re: Nissen & gastrostom Amy: Our daugther na is being fed 24 times a day now. No pump is used, the nurses are doing it. Half an hour of feeding and half an hour resting. This is limiting our playtimes, and also makes more complex the stimulation games/exercises. Doctors are going to perform a videodeglution study to see what is happening, but they mentiones Gastrotomy and Nissen as possible solutions. na has not need (by now) of a track. What makes me wonder if this is ussual with CHARGErs babies is the fact that she WAS able to drink her baby´s bottle for aproximately 1 month, when being 3 months old. We will ask about laparoscopy Nissen! Thank you very much for sharing your experiences!!! Sebastián > > My son Ben (13 month old CHARGEr) had a GTube and Nissen placed at 4 > months of age. He had trouble tolerating large volumes of food and > since he has a trach, the doctors wanted to make sure he didn't > asperate. I'm a big fan of the Gtube, and not a big fan of the > Nissen. For us, it didn't help him. He can vomit whenever he wants > and he still has trouble tolerating large volumes. Actually, I think > he has more trouble now than before because the Nissen made his > stomach even smaller than it was to start with. He gets 13 small > feeds over the pump at a very slow rate every day. His Nissen is > still in tack, which is good... but if it ever came undone, we > wouldn't have the procedure repeated. I know of lots of people who > have said the Nissen is a lifesaver, but for us it didn't help. I > hope this helps. > Good luck. If you do get the Nissen, definitely ask about having it > done laparoscopy. > > Amy Russo > > > > > > Dear CHARGE group, > > We are parents of a 5-month-old baby called na who is > > being treated and studied for her Charge Syndrome and > > metabolic problems. > > > > She's been detected a severe reflux and physicians are > > evaluating the possibility of practising a gastrostomy > > and a Nissen surgery. At this moment she is fed by tube. > > > > We would like to know if other children with this syndrome > > have undergone these surgeries, what were the results, > > and if Nissen can solve the reflux issue without > > performing the gastrostomy. > > > > It's been quite hard for us to help her, since doctors > > mentioned CHARGE syndrome at the beginning, but did not > > have much information about it, so we were encouraged to > > feed her with a baby bottle and it was a difficult task > > for her and for us. > > > > One nurse who takes care of na and > > has already looked after another child with CHARGE, > > encourages us to ask and find alternatives. > > > > I would be extremely grateful if you could provide us with > > some material for reading or consulting. And THANK YOU > > for publishing the manual: It brought sunshine to > > na's life. > > > > Sincerely yours, > > > > Vanesa & Sebastián > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 She started to cough and get extremely angry when drinking. First it started when she reached the middle of the bottle (80 cm3), so we stooped for some minutes, she rested for a while and the finish the 2nd half. So she was taking 40 cm3, ten minutes resting and the other 40 cm3. Then she started to have problems at a when she had drink 25cm3. Every day she was worst at drinking her bottles so there was the need to use a Zonda. Now she is being fed only by Zonda. If we try to fed her with bottle she caught at the first swallow. I know that CHARGErs usually have trouble in swallowing. Doctor dot think there is a Tracheo-Essofagical fistula. I´ve read the foundation´s manual and can´t find any reason why this is happening. I understand that cranial nerves may be damaged and that has to do with esophageal movements. If so, why could she drink her bottles she she was 3 months old? All swallowing problems associated with charge that I´m aware of are supposed to be present from the first days, not to increase while the babies grow. Thank for you being interested in my babie. Sebastián > > Sebastian, > > What do you think happened at 3 months of age? Why did she stop being able > > to drink her baby bottle? > > wendy > > Re: Re: Nissen & gastrostom > > Amy: > Our daugther na is being fed 24 times a day now. > No pump is used, the nurses are doing it. Half an hour of feeding and half > an hour resting. > This is limiting our playtimes, and also makes more complex the > stimulation > games/exercises. > Doctors are going to perform a videodeglution study to see what is > happening, but they mentiones Gastrotomy and Nissen as possible solutions. > na has not need (by now) of a track. > What makes me wonder if this is ussual with CHARGErs babies is the fact > that > she WAS able to drink her baby´s bottle for aproximately 1 month, when > being > 3 months old. > > We will ask about laparoscopy Nissen! > > Thank you very much for sharing your experiences!!! > > Sebastián > > On 10/2/06, Amy Russo <aarusso03@... <aarusso03%40yahoo.com>> wrote: > > > > My son Ben (13 month old CHARGEr) had a GTube and Nissen placed at 4 > > months of age. He had trouble tolerating large volumes of food and > > since he has a trach, the doctors wanted to make sure he didn't > > asperate. I'm a big fan of the Gtube, and not a big fan of the > > Nissen. For us, it didn't help him. He can vomit whenever he wants > > and he still has trouble tolerating large volumes. Actually, I think > > he has more trouble now than before because the Nissen made his > > stomach even smaller than it was to start with. He gets 13 small > > feeds over the pump at a very slow rate every day. His Nissen is > > still in tack, which is good... but if it ever came undone, we > > wouldn't have the procedure repeated. I know of lots of people who > > have said the Nissen is a lifesaver, but for us it didn't help. I > > hope this helps. > > Good luck. If you do get the Nissen, definitely ask about having it > > done laparoscopy. > > > > Amy Russo > > > > > > > > > > Dear CHARGE group, > > > We are parents of a 5-month-old baby called na who is > > > being treated and studied for her Charge Syndrome and > > > metabolic problems. > > > > > > She's been detected a severe reflux and physicians are > > > evaluating the possibility of practising a gastrostomy > > > and a Nissen surgery. At this moment she is fed by tube. > > > > > > We would like to know if other children with this syndrome > > > have undergone these surgeries, what were the results, > > > and if Nissen can solve the reflux issue without > > > performing the gastrostomy. > > > > > > It's been quite hard for us to help her, since doctors > > > mentioned CHARGE syndrome at the beginning, but did not > > > have much information about it, so we were encouraged to > > > feed her with a baby bottle and it was a difficult task > > > for her and for us. > > > > > > One nurse who takes care of na and > > > has already looked after another child with CHARGE, > > > encourages us to ask and find alternatives. > > > > > > I would be extremely grateful if you could provide us with > > > some material for reading or consulting. And THANK YOU > > > for publishing the manual: It brought sunshine to > > > na's life. > > > > > > Sincerely yours, > > > > > > Vanesa & Sebastián > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Our son, Vinny, has had the Nissen and gastrostomy procedures when he was just over 3 months of age. He was in the NICU on a ventilator for a while whe he was born so could not eat anything... his was given TPN via IVs. Once he was off the vent and the TPN, we tried oral feeds. He did not do well at all. Of course, we thought it was due to being on the ventilator for an extended period of time. There was a period of time on which he would take small amounts by mouth (once around 3 months of age he took an entire feeding orally), but cried the whole time as if here were in pain. Eventually, he would not take anything by mouth. They did the tests which showed SEVERE reflux. Although he maxed out on all of the anti-reflux meds (Prevacid, Reglan), he was still vomiting like crazy and losing weight like crazy. They finally decided on the Nissen and G-tube. I will say, however, that it was a difficult decision for the physicians (and us). There were 3 perdiatric general surgeons, a cardiologist, and a neonatalogist in on that decision. They informed us that many Nissen procedures fail- it could be too tight or too loose and not help the situation at all. To make things more complicated, Vinny's heart was not doing so well at the time. After all was said and done, I know that getting those procedures was the best decision for Vinny. At 15 months, we still feed him through the g-tube. While it is not ideal (we'd love for him to eat orally and enjoy the process of eating), it has really been his life line. He weighs over 21 pounds at this time. He attends OT for feeding issues 2 times per week and we try to feed him at home EVERY day. If we get 2 baby spoons of food in him orally, that is a great day. I hope all of this input helps. ina, mom to Luca (3) & Vinny (15 months w/ cHARgE) --- Sebastián Streiger wrote: > She started to cough and get extremely angry when > drinking. > First it started when she reached the middle of the > bottle (80 cm3), so we > stooped for some minutes, she rested for a while and > the finish the 2nd > half. So she was taking 40 cm3, ten minutes resting > and the other 40 cm3. > Then she started to have problems at a when she had > drink 25cm3. > Every day she was worst at drinking her bottles so > there was the need to use > a Zonda. > Now she is being fed only by Zonda. If we try to fed > her with bottle she > caught at the first swallow. > > I know that CHARGErs usually have trouble in > swallowing. > Doctor dot think there is a Tracheo-Essofagical > fistula. > > I´ve read the foundation´s manual and can´t find any > reason why this is > happening. > I understand that cranial nerves may be damaged and > that has to do with > esophageal movements. > If so, why could she drink her bottles she she was 3 > months old? > > All swallowing problems associated with charge that > I´m aware of are > supposed to be present from the first days, not to > increase while the babies > grow. > > Thank for you being interested in my babie. > > Sebastián > > > On 10/2/06, Keedy > wrote: > > > > Sebastian, > > > > What do you think happened at 3 months of age? Why > did she stop being able > > > > to drink her baby bottle? > > > > wendy > > > > Re: Re: Nissen & gastrostom > > > > Amy: > > Our daugther na is being fed 24 times a day > now. > > No pump is used, the nurses are doing it. Half an > hour of feeding and half > > an hour resting. > > This is limiting our playtimes, and also makes > more complex the > > stimulation > > games/exercises. > > Doctors are going to perform a videodeglution > study to see what is > > happening, but they mentiones Gastrotomy and > Nissen as possible solutions. > > na has not need (by now) of a track. > > What makes me wonder if this is ussual with > CHARGErs babies is the fact > > that > > she WAS able to drink her baby´s bottle for > aproximately 1 month, when > > being > > 3 months old. > > > > We will ask about laparoscopy Nissen! > > > > Thank you very much for sharing your > experiences!!! > > > > Sebastián > > > > On 10/2/06, Amy Russo <aarusso03@... > <aarusso03%40yahoo.com>> wrote: > > > > > > My son Ben (13 month old CHARGEr) had a GTube > and Nissen placed at 4 > > > months of age. He had trouble tolerating large > volumes of food and > > > since he has a trach, the doctors wanted to make > sure he didn't > > > asperate. I'm a big fan of the Gtube, and not a > big fan of the > > > Nissen. For us, it didn't help him. He can vomit > whenever he wants > > > and he still has trouble tolerating large > volumes. Actually, I think > > > he has more trouble now than before because the > Nissen made his > > > stomach even smaller than it was to start with. > He gets 13 small > > > feeds over the pump at a very slow rate every > day. His Nissen is > > > still in tack, which is good... but if it ever > came undone, we > > > wouldn't have the procedure repeated. I know of > lots of people who > > > have said the Nissen is a lifesaver, but for us > it didn't help. I > > > hope this helps. > > > Good luck. If you do get the Nissen, definitely > ask about having it > > > done laparoscopy. > > > > > > Amy Russo > > > > > > > > > > > > > > Dear CHARGE group, > > > > We are parents of a 5-month-old baby called > na who is > > > > being treated and studied for her Charge > Syndrome and > > > > metabolic problems. > > > > > > > > She's been detected a severe reflux and > physicians are > > > > evaluating the possibility of practising a > gastrostomy > > > > and a Nissen surgery. At this moment she is > fed by tube. > > > > > > > > We would like to know if other children with > this syndrome > > > > have undergone these surgeries, what were the > results, > > > > and if Nissen can solve the reflux issue > without > > > > performing the gastrostomy. > > > > > > > > It's been quite hard for us to help her, since > doctors > > > > mentioned CHARGE syndrome at the beginning, > but did not > > > > have much information about it, so we were > encouraged to > > > > feed her with a baby bottle and it was a > difficult task > > > > for her and for us. > > > > > > > > One nurse who takes care of na and > > > > has already looked after another child with > CHARGE, > > > > encourages us to ask and find alternatives. > > > > > > > > I would be extremely grateful if you could > provide us with > > > > some material for reading or consulting. And > THANK YOU > > > > for publishing the manual: It brought sunshine > to > > > > na's life. > > > > > > > > Sincerely yours, > > > > > > > > Vanesa & Sebastián > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not > constitute membership in > > the > > CHARGE Syndrome Foundation; for information about > the CHARGE Syndrome > > Foundation or to become a member (and get the > newsletter), > > please contact marion@... > <marion%40chargesyndrome.org> or > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 My son Eddie is nearly 7 (3 more days) & we've been dealing with new swallowing issues for the past 9 months. He has always been an oral eater, but it took about 3 years for him to accept solids (purees) without the bottle in his mouth to assist in the swallow. He's been eating oatmeal-like or chunky purees for 4 years but lately brings the food in and out of his mouth several times before finally swallowing it. (And he can regurgitate it up to several hours later, but the GI doesn't think it's severe enough to go the Nissen route at this time) A recent swallow study showed that the thicker textures don't go down the esophagus as easily as milk or puddings, so we're back to a sip of liquid after most bites. Have any of your doctors suggested a swallow study to see what's going on internally as she swallows? joanne > I´ve read the foundation´s manual and can´t find any reason why this > is happening. > I understand that cranial nerves may be damaged and that has to do > with esophageal movements. If so, why could she drink her bottles she > she was 3 months old? > > All swallowing problems associated with charge that I´m aware of are > supposed to be present from the first days, not to increase while the > babies grow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi Sebastian, I sent one reply to you already (off-list, and addressed to your wife!). In terms of why she might swallow earlier, and not later I have a couple of ideas (and these are just ideas--I don't have anything scientific to back it up). One is that the cranial nerve palsys can change over time. Usually they improve, but there have been examples of them getting worse. Our son Evan did not appear to have any facial nerve palsys at birth, and at around 2 weeks started showing a right-sided facial palsy (his mouth and eye lids on that side didn't move). Around 2 months, it changed so that he could blink but not close his eyes all the way on either side (but could move the left side of his mouth). Between 4 and 5 months, he started smiling--but now the right side of his mouth could move and the left had the palsy. Gradually, his blinking has become more full and he closes both eyes completely most of the time. If facial nerve palsys can change, maybe palsys of the nerves involved in swallowing can do the same??? The second thought has to do with something I have read about infant swallowing. When babies are first born, the swallowing is more reflexive. As they get older, the way the nervous system directs swallowing changes--I don't remember exactly when this switch occurs...maybe it is around 3 months. Maybe the reflexive swallow wasn't affected by her CHARGE syndrome, but it did affect the part of the nervous system directing her swallow now. Just a thought. Hope you are able to find some answers for your daughter. (mom to Evan, 14.5 months) Sebastián Streiger wrote: She started to cough and get extremely angry when drinking. First it started when she reached the middle of the bottle (80 cm3), so we stooped for some minutes, she rested for a while and the finish the 2nd half. So she was taking 40 cm3, ten minutes resting and the other 40 cm3. Then she started to have problems at a when she had drink 25cm3. Every day she was worst at drinking her bottles so there was the need to use a Zonda. Now she is being fed only by Zonda. If we try to fed her with bottle she caught at the first swallow. I know that CHARGErs usually have trouble in swallowing. Doctor dot think there is a Tracheo-Essofagical fistula. I´ve read the foundation´s manual and can´t find any reason why this is happening. I understand that cranial nerves may be damaged and that has to do with esophageal movements. If so, why could she drink her bottles she she was 3 months old? All swallowing problems associated with charge that I´m aware of are supposed to be present from the first days, not to increase while the babies grow. Thank for you being interested in my babie. Sebastián > > Sebastian, > > What do you think happened at 3 months of age? Why did she stop being able > > to drink her baby bottle? > > wendy > > Re: Re: Nissen & gastrostom > > Amy: > Our daugther na is being fed 24 times a day now. > No pump is used, the nurses are doing it. Half an hour of feeding and half > an hour resting. > This is limiting our playtimes, and also makes more complex the > stimulation > games/exercises. > Doctors are going to perform a videodeglution study to see what is > happening, but they mentiones Gastrotomy and Nissen as possible solutions. > na has not need (by now) of a track. > What makes me wonder if this is ussual with CHARGErs babies is the fact > that > she WAS able to drink her baby´s bottle for aproximately 1 month, when > being > 3 months old. > > We will ask about laparoscopy Nissen! > > Thank you very much for sharing your experiences!!! > > Sebastián > > On 10/2/06, Amy Russo <aarusso03@... <aarusso03%40yahoo.com>> wrote: > > > > My son Ben (13 month old CHARGEr) had a GTube and Nissen placed at 4 > > months of age. He had trouble tolerating large volumes of food and > > since he has a trach, the doctors wanted to make sure he didn't > > asperate. I'm a big fan of the Gtube, and not a big fan of the > > Nissen. For us, it didn't help him. He can vomit whenever he wants > > and he still has trouble tolerating large volumes. Actually, I think > > he has more trouble now than before because the Nissen made his > > stomach even smaller than it was to start with. He gets 13 small > > feeds over the pump at a very slow rate every day. His Nissen is > > still in tack, which is good... but if it ever came undone, we > > wouldn't have the procedure repeated. I know of lots of people who > > have said the Nissen is a lifesaver, but for us it didn't help. I > > hope this helps. > > Good luck. If you do get the Nissen, definitely ask about having it > > done laparoscopy. > > > > Amy Russo > > > > > > > > > > Dear CHARGE group, > > > We are parents of a 5-month-old baby called na who is > > > being treated and studied for her Charge Syndrome and > > > metabolic problems. > > > > > > She's been detected a severe reflux and physicians are > > > evaluating the possibility of practising a gastrostomy > > > and a Nissen surgery. At this moment she is fed by tube. > > > > > > We would like to know if other children with this syndrome > > > have undergone these surgeries, what were the results, > > > and if Nissen can solve the reflux issue without > > > performing the gastrostomy. > > > > > > It's been quite hard for us to help her, since doctors > > > mentioned CHARGE syndrome at the beginning, but did not > > > have much information about it, so we were encouraged to > > > feed her with a baby bottle and it was a difficult task > > > for her and for us. > > > > > > One nurse who takes care of na and > > > has already looked after another child with CHARGE, > > > encourages us to ask and find alternatives. > > > > > > I would be extremely grateful if you could provide us with > > > some material for reading or consulting. And THANK YOU > > > for publishing the manual: It brought sunshine to > > > na's life. > > > > > > Sincerely yours, > > > > > > Vanesa & Sebastián > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 hey it is possible she is aspriating and as for y she could drink back then and not now i wouldtn know i am a charger allwasy have aspirated form day one id like to put that one out to any others ever seen later ones in this world of charge anything is possible and everything is posible ive had gastrostomy and a nissen nissen has fialed three times ive also got a feeding jstoma three eyars ago they took my gall bladder out which really helped i have dumping syndrome which is common in most chargers ive also got hearing probs colabomas growth problems and many other stuff hugs ellen in aus 21 > > My son Eddie is nearly 7 (3 more days) & we've been dealing with new > swallowing issues for the past 9 months. He has always been an oral > eater, but it took about 3 years for him to accept solids (purees) > without the bottle in his mouth to assist in the swallow. He's been > eating oatmeal-like or chunky purees for 4 years but lately brings the > food in and out of his mouth several times before finally swallowing > it. (And he can regurgitate it up to several hours later, but the GI > doesn't think it's severe enough to go the Nissen route at this time) > > A recent swallow study showed that the thicker textures don't go down > the esophagus as easily as milk or puddings, so we're back to a sip of > liquid after most bites. > > Have any of your doctors suggested a swallow study to see what's going > on internally as she swallows? > > joanne > > > > > I´ve read the foundation´s manual and can´t find any reason why this > > is happening. > > I understand that cranial nerves may be damaged and that has to do > > with esophageal movements. If so, why could she drink her bottles she > > she was 3 months old? > > > > All swallowing problems associated with charge that I´m aware of are > > supposed to be present from the first days, not to increase while the > > babies grow. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Joanne: In 10 days doctors are going to perform a Barium-swallow study. I hope this bring light to what can be done. I hope Eddie have a Happy Birthday!!!!! Greetings Sebastián > > My son Eddie is nearly 7 (3 more days) & we've been dealing with new > swallowing issues for the past 9 months. He has always been an oral > eater, but it took about 3 years for him to accept solids (purees) > without the bottle in his mouth to assist in the swallow. He's been > eating oatmeal-like or chunky purees for 4 years but lately brings the > food in and out of his mouth several times before finally swallowing > it. (And he can regurgitate it up to several hours later, but the GI > doesn't think it's severe enough to go the Nissen route at this time) > > A recent swallow study showed that the thicker textures don't go down > the esophagus as easily as milk or puddings, so we're back to a sip of > liquid after most bites. > > Have any of your doctors suggested a swallow study to see what's going > on internally as she swallows? > > joanne > > > > > I´ve read the foundation´s manual and can´t find any reason why this > > is happening. > > I understand that cranial nerves may be damaged and that has to do > > with esophageal movements. If so, why could she drink her bottles she > > she was 3 months old? > > > > All swallowing problems associated with charge that I´m aware of are > > supposed to be present from the first days, not to increase while the > > babies grow. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Sebastian, I think that the Barium Swallow should help shed some light on what is going on with your daughters feedings. My son does not have a trach but has never been able to swallow a bottle. We did several Barium Swallows that revealed had severe reflux and he aspirated liquids to his lungs. The doctors placed a Gastromy button but my husband and I chose not to have the nissen performed on our son. Instead his reflux has been controlled with a combination of previcid and keeping him in the upright position after eating. did have a cleft lip and palette but this wasn't the cause of the aspirating. The reason they told me that was unable to tolerate is feedings was uncoordinated swallowing. However, this seemed a little generic to me so I investigated further with an Ear Nose and Throat (ENT) Doctor. While was awake the ENT placed a scope through s nose and on a TV screen we could see the anatomy in s Asophagus. This was very helpful for us. We learned that has Laryngomalacia which means the cartilage in his larynx is underdeveloped or floppy. The purpose of the cartlige is to direct the food away from the windspipe and since his is floppy it doesn't function properly. With laryngomalacia there is no intervention we were told that it will develop on his own by the time he is 18 months. Another thing that I wanted to mention is that the first scope that the dr. performed he learned that had severe redness and swelling all the way through the larynx, this is another reason that he was unable to swallow. The scope that we had 6 months later showed no redness and swelling because the prevecid medication contolled the refulx. When it is red and swollen it makes it difficult for the children to tolerate the food. It might be possible that your daugheter was able to tolerate the feedings for the first 3 months but maybe she was refluxing during that time without much discomfort, but as time went on it became more raw and red and swollen causing her to not be able to tolerate the feedings well anymore. As for my son, I am really glad personally that we did not have the Nissen perfomed because the previcid medication controlled the reflux after a little bit of time. And now that he is 13 months, he doesn't depend on the medication as much but still needs it. As for the Gastromy Button, this was a lifesaver for us. It made the difference between being malnourished. The button is not neccessarily a permanant thing. Once the button is placed and your daughter is holding her weight you can work with her on swallowing and amounts of liquid etc. By the way I wanted to mention that with the button we also fed with a pump really slowly because he couldn't tolorate large volumes, but now we are to the point where there is no more pump and we feed him bolus feedings 5 times a day, we just slowly worked our way to that point by gradually increasing the volumes. The gastromy button made life easier for all of us and especially . Hope this helps, keep us posted. > > Joanne: > In 10 days doctors are going to perform a Barium-swallow study. > I hope this bring light to what can be done. > I hope Eddie have a Happy Birthday!!!!! > > Greetings > Sebastián > > On 10/2/06, Joanne Lent <Joannelent@... <Joannelent%40verizon.net>> > wrote: > > > > My son Eddie is nearly 7 (3 more days) & we've been dealing with new > > swallowing issues for the past 9 months. He has always been an oral > > eater, but it took about 3 years for him to accept solids (purees) > > without the bottle in his mouth to assist in the swallow. He's been > > eating oatmeal-like or chunky purees for 4 years but lately brings the > > food in and out of his mouth several times before finally swallowing > > it. (And he can regurgitate it up to several hours later, but the GI > > doesn't think it's severe enough to go the Nissen route at this time) > > > > A recent swallow study showed that the thicker textures don't go down > > the esophagus as easily as milk or puddings, so we're back to a sip of > > liquid after most bites. > > > > Have any of your doctors suggested a swallow study to see what's going > > on internally as she swallows? > > > > joanne > > > > > > > > > I´ve read the foundation´s manual and can´t find any reason why this > > > is happening. > > > I understand that cranial nerves may be damaged and that has to do > > > with esophageal movements. If so, why could she drink her bottles she > > > she was 3 months old? > > > > > > All swallowing problems associated with charge that I´m aware of are > > > supposed to be present from the first days, not to increase while the > > > babies grow. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 hi sebastian, i have a son 28yrs old(michael)...he has had trouble with refllux from the get go...he has had numerous egd with dilations of the esophagus...the reflux scarred his esophagus so bad it caused strictures...which caused him not to be able to swallow...we did go the nissen route at age 15yr...it helped...he is on prilosec...80mg a day...which has also helped in slowing down the damage the reflux causes...he sees a GI specialist regularly for egd to see if he needs the dilation again...he has always been on pureed foods...and is doing well...the egd's go quickly and he can come home afterwards....it was years before we realized his crying and was associated with his reflux problems...unfortunately his pediatrican never picked up on it...it wasn't until we had him admitted into the hospital demanding they put him through every test they could to see if there was anything that caused him to cry for hours and act out in tantrems...which would go on for days at a time and then seem to stop for months just to start up again...it would come and go in waves it seemed...but discovering he had a severe reflux problem was a blessing...unfortunately it had progressed into barretts esophagus....the damage can't be repaired but controlled with h1blockers...if i had known about it when he was little...i would have made sure i didn't lay him down flat at night to sleep...it seemed like every night he would wake up screaming....i wished i had known what was going on at the time....i wish u the best with the upcoming procedure for eddie...i'm sure if the dilation is done u will see instant results and he will do so much better with his eating....trish(mom to michael 28yrs, charge) Sebastián Streiger wrote: Joanne: In 10 days doctors are going to perform a Barium-swallow study. I hope this bring light to what can be done. I hope Eddie have a Happy Birthday!!!!! Greetings Sebastián > > My son Eddie is nearly 7 (3 more days) & we've been dealing with new > swallowing issues for the past 9 months. He has always been an oral > eater, but it took about 3 years for him to accept solids (purees) > without the bottle in his mouth to assist in the swallow. He's been > eating oatmeal-like or chunky purees for 4 years but lately brings the > food in and out of his mouth several times before finally swallowing > it. (And he can regurgitate it up to several hours later, but the GI > doesn't think it's severe enough to go the Nissen route at this time) > > A recent swallow study showed that the thicker textures don't go down > the esophagus as easily as milk or puddings, so we're back to a sip of > liquid after most bites. > > Have any of your doctors suggested a swallow study to see what's going > on internally as she swallows? > > joanne > > > > > I´ve read the foundation´s manual and can´t find any reason why this > > is happening. > > I understand that cranial nerves may be damaged and that has to do > > with esophageal movements. If so, why could she drink her bottles she > > she was 3 months old? > > > > All swallowing problems associated with charge that I´m aware of are > > supposed to be present from the first days, not to increase while the > > babies grow. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 : Thank for sharing your experiences. I´ll keep you posted about what the barium-swallow shows. All personal experiences are valuable for us to know what to do. Thanks!!!! Sebastián > > Sebastian, > > I think that the Barium Swallow should help shed some light on what is > going > on with your daughters feedings. My son does not have a trach but > has > never been able to swallow a bottle. We did several Barium Swallows that > revealed had severe reflux and he aspirated liquids to his lungs. > The > doctors placed a Gastromy button but my husband and I chose not to have > the > nissen performed on our son. Instead his reflux has been controlled with a > combination of previcid and keeping him in the upright position after > eating. did have a cleft lip and palette but this wasn't the cause > of > the aspirating. The reason they told me that was unable to tolerate > is feedings was uncoordinated swallowing. However, this seemed a little > generic to me so I investigated further with an Ear Nose and Throat (ENT) > Doctor. While was awake the ENT placed a scope through s nose > and on a TV screen we could see the anatomy in s Asophagus. This was > very helpful for us. We learned that has Laryngomalacia which means > the cartilage in his larynx is underdeveloped or floppy. The purpose of > the > cartlige is to direct the food away from the windspipe and since his is > floppy it doesn't function properly. With laryngomalacia there is no > intervention we were told that it will develop on his own by the time he > is > 18 months. Another thing that I wanted to mention is that the first scope > that the dr. performed he learned that had severe redness and > swelling > all the way through the larynx, this is another reason that he was unable > to > swallow. The scope that we had 6 months later showed no redness and > swelling because the prevecid medication contolled the refulx. When it is > red and swollen it makes it difficult for the children to tolerate the > food. It might be possible that your daugheter was able to tolerate the > feedings for the first 3 months but maybe she was refluxing during that > time > without much discomfort, but as time went on it became more raw and red > and > swollen causing her to not be able to tolerate the feedings well anymore. > As for my son, I am really glad personally that we did not have the Nissen > perfomed because the previcid medication controlled the reflux after a > little bit of time. And now that he is 13 months, he doesn't depend on the > medication as much but still needs it. As for the Gastromy Button, this > was > a lifesaver for us. It made the difference between being > malnourished. The button is not neccessarily a permanant thing. Once the > button is placed and your daughter is holding her weight you can work with > her on swallowing and amounts of liquid etc. By the way I wanted to > mention > that with the button we also fed with a pump really slowly because > he > couldn't tolorate large volumes, but now we are to the point where there > is > no more pump and we feed him bolus feedings 5 times a day, we just slowly > worked our way to that point by gradually increasing the volumes. The > gastromy button made life easier for all of us and especially . > Hope this helps, keep us posted. > > > > On 10/3/06, Sebastián Streiger <sebastian.streiger@...<sebastian.streiger%40gmail.com>> > wrote: > > > > Joanne: > > In 10 days doctors are going to perform a Barium-swallow study. > > I hope this bring light to what can be done. > > I hope Eddie have a Happy Birthday!!!!! > > > > Greetings > > Sebastián > > > > On 10/2/06, Joanne Lent <Joannelent@...<Joannelent%40verizon.net><Joannelent%40verizon.net>> > > wrote: > > > > > > My son Eddie is nearly 7 (3 more days) & we've been dealing with new > > > swallowing issues for the past 9 months. He has always been an oral > > > eater, but it took about 3 years for him to accept solids (purees) > > > without the bottle in his mouth to assist in the swallow. He's been > > > eating oatmeal-like or chunky purees for 4 years but lately brings the > > > food in and out of his mouth several times before finally swallowing > > > it. (And he can regurgitate it up to several hours later, but the GI > > > doesn't think it's severe enough to go the Nissen route at this time) > > > > > > A recent swallow study showed that the thicker textures don't go down > > > the esophagus as easily as milk or puddings, so we're back to a sip of > > > liquid after most bites. > > > > > > Have any of your doctors suggested a swallow study to see what's going > > > on internally as she swallows? > > > > > > joanne > > > > > > > > > > > > > I´ve read the foundation´s manual and can´t find any reason why this > > > > is happening. > > > > I understand that cranial nerves may be damaged and that has to do > > > > with esophageal movements. If so, why could she drink her bottles > she > > > > she was 3 months old? > > > > > > > > All swallowing problems associated with charge that I´m aware of are > > > > supposed to be present from the first days, not to increase while > the > > > > babies grow. > > > > > > Quote Link to comment Share on other sites More sharing options...
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