Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 I am new here and may be in the completely wrong place! We recently adopted a little girl from Africa - she has esophageal strictures caused by a caustic ingestion (swallowed lye as a toddler). We have her treatment underway but it has been a little disheartening. The dilations last only two weeks, and by the end of that time she is closed back down to less than 1mm. We are trying to figure out where to go from here. Is there anyone here with a child having dilations this frequently? Thanks, (Jaso's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , There is a whole other branch of esophageal surgeries that come under the category of the operation known as esophagoplasty. This essentially consists of a reconstruction of the esophagus. While rarely performed for achalasia patients, it is more commonly performed for people with either esophageal cancer or who have suffered strictures caused by a caustic agent, specifically what happened to your daughter. Few surgeons perform it, and its not an easy surgery. Dr. Dempsey, of Temple University in Philadelphia, has done it, but not frequently. I don't know where you live, but using a search engine, such as Google, click on the following link, might lead you to the right place. esophagus esophagoplasty - Google Search Also, Dr. Dempsey, can be located with the following link, which includes his phone number and email. He does respond to emails. Temple University School of Medicine Department of Surgery Faculty: T. Dempsey, MD In a message dated 1/4/2007 9:18:23 A.M. Eastern Standard Time, jennifer@... writes: I am new here and may be in the completely wrong place! We recently adopted a little girl from Africa - she has esophageal strictures caused by a caustic ingestion (swallowed lye as a toddler). We have her treatment underway but it has been a little disheartening. The dilations last only two weeks, and by the end of that time she is closed back down to less than 1mm. We are trying to figure out where to go from here. Is there anyone here with a child having dilations this frequently?Thanks, (Jaso's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , First let me commend you and congratulate you on your adoption!! I don’t think there is anyone here with a child that has ever had dilations done that frequently! Have they spoke of any long term procedures that might help her? I would think all of that couldn’t be good for her long term. C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of miaandco Sent: Wednesday, January 03, 2007 10:04 PM achalasia Subject: newbie - question I am new here and may be in the completely wrong place! We recently adopted a little girl from Africa - she has esophageal strictures caused by a caustic ingestion (swallowed lye as a toddler). We have her treatment underway but it has been a little disheartening. The dilations last only two weeks, and by the end of that time she is closed back down to less than 1mm. We are trying to figure out where to go from here. Is there anyone here with a child having dilations this frequently? Thanks, (Jaso's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 wrote: > I am new here and may be in the completely wrong place! Right or wrong, welcome to the group. I believe you are the first to seek help here for strictures from swallowing lye. It can take repeated dilations to work. Unlike achalasia where the main problem is the muscle with these strictures the problem is scar tissue inside the esophagus. It has to be broken which means it has to be stretched far enough but not so far that the damaged esophagus ruptures. My guess is they will start small and go bigger as needed. This can take some time. Also scar tissue can regrow so this can be an ongoing fight. The best advise I can give you is to be sure the person doing this has done lots of dilatations, hopefully some on children, and some for caustic ingestion. Also, you probably already know this, she will need to be checked regularly later in her life, even if she is not having problems swallowing. She is at high risk for cancer because of the lye. Typically it takes about 40 years to develop. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , You might not be in the wrong place. Secondary achalasia can occur as a result of the esophagus being constricted for a long time. That can happen from certain surgeries, and I imagine that it might also be possible as a result of a stricture. What tests has Jaso had so far? Barium swallow, endoscopy, manometry? Where are you located? I'm asking in case someone on the list can recommend a good doctor for achalasia in your area who could diagnose it properly. in Lancaster, PA newbie - question >I am new here and may be in the completely wrong place! We > recently adopted a little girl from Africa - she has esophageal > strictures caused by a caustic ingestion (swallowed lye as a > toddler). > We have her treatment underway but it has been a little > disheartening. > The dilations last only two weeks, and by the end of that time > she is > closed back down to less than 1mm. We are trying to figure out > where > to go from here. Is there anyone here with a child having > dilations > this frequently? > > Thanks, > (Jaso's mom) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Thanks . She had a dilation this last thursday and they injected steiroids into the stricture area (well, she has two stricture areas and they got steiroids into the top one - they had to stop the procedure halfway through the dilation of the bottom stricture because she was having oxygen problems). The hope is that when we go in again in two weeks that the steiroids will have helped the dilation to "hold" better. If that's the case, we should be able to stretch out the time between dilations. If not, we will start looking at stents - they can be used to hold the strictured areas open, but she is tricky because she has two areas. Last resort is a colonic interposition (replacing damaged esophagus with colon) but is really something we want to avoid and still may not be a great option for her because we're talking about two separate areas rather than one..... It's all new to us and we're feeling our way through. She is such a joy and has had this condition as long as she can remember so she isn't affected too much emotionally by her limited diet and constant medical intervention. However, I can see that in the future the psychological effects must be hard to handle..... - RE: newbie - question , First let me commend you and congratulate you on your adoption!! I don’t think there is anyone here with a child that has ever had dilations done that frequently! Have they spoke of any long term procedures that might help her? I would think all of that couldn’t be good for her long term. C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of miaandcoSent: Wednesday, January 03, 2007 10:04 PMachalasia Subject: newbie - question I am new here and may be in the completely wrong place! We recently adopted a little girl from Africa - she has esophageal strictures caused by a caustic ingestion (swallowed lye as a toddler). We have her treatment underway but it has been a little disheartening. The dilations last only two weeks, and by the end of that time she is closed back down to less than 1mm. We are trying to figure out where to go from here. Is there anyone here with a child having dilations this frequently?Thanks, (Jaso's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Thanks - we are so fortunate to live 4 miles from The Children's Hospital, so her specialist is a pediatric gastroenterologist and has lots of experience with caustic ingestions and dilations. Her case is unique because she has two strictures and was untreated for so long (much can be done in the 24-48 hours following an ingestion, but we are three years down the road from her injury). How often do people go in for a cancer screening? I know it is part of her future but haven't heard from anyone on how often they check.....I know the symptoms would be similar to what she already experiences so symptoms wouldn't give us any indication...... - http://theisaacsliberia.blogspot.com Re: newbie - question wrote:> I am new here and may be in the completely wrong place! :)Right or wrong, welcome to the group.I believe you are the first to seek help here for strictures from swallowing lye. It can take repeated dilations to work. Unlike achalasia where the main problem is the muscle with these strictures the problem is scar tissue inside the esophagus. It has to be broken which means it has to be stretched far enough but not so far that the damaged esophagus ruptures. My guess is they will start small and go bigger as needed. This can take some time. Also scar tissue can regrow so this can be an ongoing fight. The best advise I can give you is to be sure the person doing this has done lots of dilatations, hopefully some on children, and some for caustic ingestion. Also, you probably already know this, she will need to be checked regularly later in her life, even if she is not having problems swallowing. She is at high risk for cancer because of the lye. Typically it takes about 40 years to develop.notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 She has had barium swallow and endoscopy. Each dilation is done in floroscopy (sp?). I will ask our doc about achalasia.... Thanks! - http://theisaacsliberia.blogspot.com newbie - question>I am new here and may be in the completely wrong place! We> recently adopted a little girl from Africa - she has esophageal> strictures caused by a caustic ingestion (swallowed lye as a > toddler).> We have her treatment underway but it has been a little > disheartening.> The dilations last only two weeks, and by the end of that time > she is> closed back down to less than 1mm. We are trying to figure out > where> to go from here. Is there anyone here with a child having > dilations> this frequently?>> Thanks,> (Jaso's mom)>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 wrote: How often do people go in for a cancer screening? I don't know what the standard for that would be, but it probably depends on the number years from the injury. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 wrote: She had a dilation this last thursday and they injected steiroids into the stricture area (well, she has two stricture areas and they got steiroids into the top one - they had to stop the procedure halfway through the dilation of the bottom stricture because she was having oxygen problems). The hope is that when we go in again in two weeks that the steiroids will have helped the dilation to "hold" better. The strictures are scar tissue but dilatation causes injury, which causes inflammation, which causes more scar tissue, so you need more dilatations. The steroids can help with the inflammation and scarring. Something that can contribute to inflammation is stomach acid. If she has any heartburn it may be good for her to be on something to reduce acid until, as you say, the dilation holds. This is also true with stents. One paper on removable stents reported that they did not work if the acid measurement was above a certain level. Is she eating enough? People here have foods they have found that work for them when they are having problems. Different things work for different people. notan Quote Link to comment Share on other sites More sharing options...
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