Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi Shamira, I hope that the test results can shed some light on her condition and that something can be done. Refresh my memory, has she been diagnosed with achalasia? If so, is she experiencing reflux or heartburn? I am wondering why the GI doc has her on Prilosec and suggests to increase the dosage. Cara > > Hello every one, > > I hope every one is doing well. On the 15th Taniea had a GI appointment with Dr. Altaf at the OU Children's medical center in OKC. It went relitively well but this is what he had to offer. He wants to start with a barium swallow to see what is going on after that depending on the results do another motility test and if surgery is an option then that would be the next step. He said I needed to increase her prilosec to two times a day at least for a month. He also said that the pain she is experiencing sounds as if her esophagus is contracting to get the stuck food down. Last night however I can say with out a doubt she had a spasm she rated it a 10 and we tried stretching and ice packs which seemed to provide some relief. > > She is reguritating again and food is getting stuck even with lots of fluids. > If you all have any advice please feel free to offer I am always reading. > > Thank you > Shamira > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Yes she was been diagnosed in July of last year. She hasn't said that she has acid reflux I think it was given to her as a precaution. It's all about love**•• --<@ On Feb 17, 2011, at 12:29 PM, " spotoca " <cspoto@...> wrote: > Hi Shamira, > I hope that the test results can shed some light on her condition and that something can be done. Refresh my memory, has she been diagnosed with achalasia? If so, is she experiencing reflux or heartburn? I am wondering why the GI doc has her on Prilosec and suggests to increase the dosage. > > Cara > > > > > > Hello every one, > > > > I hope every one is doing well. On the 15th Taniea had a GI appointment with Dr. Altaf at the OU Children's medical center in OKC. It went relitively well but this is what he had to offer. He wants to start with a barium swallow to see what is going on after that depending on the results do another motility test and if surgery is an option then that would be the next step. He said I needed to increase her prilosec to two times a day at least for a month. He also said that the pain she is experiencing sounds as if her esophagus is contracting to get the stuck food down. Last night however I can say with out a doubt she had a spasm she rated it a 10 and we tried stretching and ice packs which seemed to provide some relief. > > > > She is reguritating again and food is getting stuck even with lots of fluids. > > If you all have any advice please feel free to offer I am always reading. > > > > Thank you > > Shamira > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi Shamira, my daughter was diagnosed with achalasia last month. Her primary doctor has her on Prilosec and did not help her. When she saw her GI doc, he told her to stop taking the Prilosec because it will not work for her condition only SURGERY. She is scheduled for HM end of the month. It is an aweful awful disorder. I can't wait for the surgery to ease her suffering. Take care and good luck. ________________________________ From: spotoca <cspoto@...> achalasia Sent: Thu, February 17, 2011 1:29:02 PM Subject: Re: Taniea's GI visit  Hi Shamira, I hope that the test results can shed some light on her condition and that something can be done. Refresh my memory, has she been diagnosed with achalasia? If so, is she experiencing reflux or heartburn? I am wondering why the GI doc has her on Prilosec and suggests to increase the dosage. Cara > > Hello every one, > > I hope every one is doing well. On the 15th Taniea had a GI appointment with >Dr. Altaf at the OU Children's medical center in OKC. It went relitively well >but this is what he had to offer. He wants to start with a barium swallow to see >what is going on after that depending on the results do another motility test >and if surgery is an option then that would be the next step. He said I needed >to increase her prilosec to two times a day at least for a month. He also said >that the pain she is experiencing sounds as if her esophagus is contracting to >get the stuck food down. Last night however I can say with out a doubt she had a >spasm she rated it a 10 and we tried stretching and ice packs which seemed to >provide some relief. > > > She is reguritating again and food is getting stuck even with lots of fluids. > If you all have any advice please feel free to offer I am always reading. > > Thank you > Shamira > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Shamira - didn't she already have a hellers? sorry - soemtimes there are so many people it gets hard to keep track. Regardless, please, please, please make sure you go to the MOST experienced person you can and that's going to be tough to find because A is so rare and even more rare in young children. Do you have a childrens hospital near by? are you going to a pediatric surgeon? UGH! I feel for you. I was 12 when I started having symptoms and this was back in the dark ages before the internet - my parents had no support or information to find on their own - just what the doctors told them. At least now there are so many more resources and support - I am happy for that. Please keep us posted. ~ in NC > > > > Hello every one, > > > > I hope every one is doing well. On the 15th Taniea had a GI appointment with > >Dr. Altaf at the OU Children's medical center in OKC. It went relitively well > >but this is what he had to offer. He wants to start with a barium swallow to see > >what is going on after that depending on the results do another motility test > >and if surgery is an option then that would be the next step. He said I needed > >to increase her prilosec to two times a day at least for a month. He also said > >that the pain she is experiencing sounds as if her esophagus is contracting to > >get the stuck food down. Last night however I can say with out a doubt she had a > >spasm she rated it a 10 and we tried stretching and ice packs which seemed to > >provide some relief. > > > > > > She is reguritating again and food is getting stuck even with lots of fluids. > > If you all have any advice please feel free to offer I am always reading. > > > > Thank you > > Shamira > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Yes she has had the myotomy already but he thinks that there may a another part of esophagus that wasn't fixed ( using this term loosely). He said that they have the HRM which is a good thing I believe... The pcp hasn't seen any signs of acid reflux they put Taniea on it as a precaution. It's all about love**•• --<@ On Feb 18, 2011, at 8:31 AM, " zlmmom1 " <mcnairmichelle@...> wrote: > Hi Shamira - didn't she already have a hellers? sorry - soemtimes there are so many people it gets hard to keep track. Regardless, please, please, please make sure you go to the MOST experienced person you can and that's going to be tough to find because A is so rare and even more rare in young children. Do you have a childrens hospital near by? are you going to a pediatric surgeon? UGH! I feel for you. I was 12 when I started having symptoms and this was back in the dark ages before the internet - my parents had no support or information to find on their own - just what the doctors told them. At least now there are so many more resources and support - I am happy for that. > Please keep us posted. > > ~ in NC > > > > > > > > Hello every one, > > > > > > I hope every one is doing well. On the 15th Taniea had a GI appointment with > > >Dr. Altaf at the OU Children's medical center in OKC. It went relitively well > > >but this is what he had to offer. He wants to start with a barium swallow to see > > >what is going on after that depending on the results do another motility test > > >and if surgery is an option then that would be the next step. He said I needed > > >to increase her prilosec to two times a day at least for a month. He also said > > >that the pain she is experiencing sounds as if her esophagus is contracting to > > >get the stuck food down. Last night however I can say with out a doubt she had a > > >spasm she rated it a 10 and we tried stretching and ice packs which seemed to > > >provide some relief. > > > > > > > > > She is reguritating again and food is getting stuck even with lots of fluids. > > > If you all have any advice please feel free to offer I am always reading. > > > > > > Thank you > > > Shamira > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Another suggetions to help so that food does not get stuck as much...give her pureed food. Especially good are homecooked pureed vegetable soups with a little protein in them. In the meantime, follow all the good advice from the others on this site about seeing the best doc in your area. Eva in Chicagoland. > > > Hi Shamira - didn't she already have a hellers? sorry - soemtimes there are so many people it gets hard to keep track. Regardless, please, please, please make sure you go to the MOST experienced person you can and that's going to be tough to find because A is so rare and even more rare in young children. Do you have a childrens hospital near by? are you going to a pediatric surgeon? UGH! I feel for you. I was 12 when I started having symptoms and this was back in the dark ages before the internet - my parents had no support or information to find on their own - just what the doctors told them. At least now there are so many more resources and support - I am happy for that. > > Please keep us posted. > > > > ~ in NC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Pureed vegetable soup sounds awesome today. Follow up appointment went well. Taniea told the her that she kind of liked the Dr. which tells me maybe we need to look in another direction. I really believe that even though she is only 12 she should know exactly what is going on and have a choice in the decision making, after all this her life we are trying to improve. Carolyn sent me a list of Dr's that I am going to contact. ________________________________ From: eva_gaia <eva_gaia@...> achalasia Sent: Fri, February 18, 2011 9:48:22 AM Subject: Re: Taniea's GI visit Another suggetions to help so that food does not get stuck as much...give her pureed food. Especially good are homecooked pureed vegetable soups with a little protein in them. In the meantime, follow all the good advice from the others on this site about seeing the best doc in your area. Eva in Chicagoland. > > > Hi Shamira - didn't she already have a hellers? sorry - soemtimes there are >so many people it gets hard to keep track. Regardless, please, please, please >make sure you go to the MOST experienced person you can and that's going to be >tough to find because A is so rare and even more rare in young children. Do you >have a childrens hospital near by? are you going to a pediatric surgeon? UGH! I >feel for you. I was 12 when I started having symptoms and this was back in the >dark ages before the internet - my parents had no support or information to find >on their own - just what the doctors told them. At least now there are so many >more resources and support - I am happy for that. > > Please keep us posted. > > > > ~ in NC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Shamira - you absolutely should allow her to be part of the decision making process - good for you getting her started so early. She has a lifelong condition that she is eventually going to need to manage herself - teach her to advocate now! Glad you've been able to get some help here. Please keep us posted. ~ in NC > > > > > Hi Shamira - didn't she already have a hellers? sorry - soemtimes there are > >so many people it gets hard to keep track. Regardless, please, please, please > >make sure you go to the MOST experienced person you can and that's going to be > >tough to find because A is so rare and even more rare in young children. Do you > >have a childrens hospital near by? are you going to a pediatric surgeon? UGH! I > >feel for you. I was 12 when I started having symptoms and this was back in the > >dark ages before the internet - my parents had no support or information to find > >on their own - just what the doctors told them. At least now there are so many > >more resources and support - I am happy for that. > > > Please keep us posted. > > > > > > ~ in NC > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I am sorry it has taken me so long to get back to you. Yes, this disease is absolutely horrible. Taniea's pcp also put her on Prilosec prior to the surgery and then took her off as it wasn't helping she even thought that is was making it worse. She had her myotomy on August 11 of last year and it seems to have helped some but she still has a lot of issues. How is your daughter doing? And how are you coping? For me finding this group was a big help. But Taniea had me and I felt alone and allowed myself feel as if I am a failure as a mom. Let me tell you, you are not alone and if you ever need some one to talk to I am here, and I am sure that the group would tell you the same. ________________________________ From: fe busse <bil45ohb@...> achalasia Sent: Thu, February 17, 2011 5:16:28 PM Subject: Re: Re: Taniea's GI visit Hi Shamira, my daughter was diagnosed with achalasia last month. Her primary doctor has her on Prilosec and did not help her. When she saw her GI doc, he told her to stop taking the Prilosec because it will not work for her condition only SURGERY. She is scheduled for HM end of the month. It is an aweful awful disorder. I can't wait for the surgery to ease her suffering. Take care and good luck. ________________________________ From: spotoca <cspoto@...> achalasia Sent: Thu, February 17, 2011 1:29:02 PM Subject: Re: Taniea's GI visit Hi Shamira, I hope that the test results can shed some light on her condition and that something can be done. Refresh my memory, has she been diagnosed with achalasia? If so, is she experiencing reflux or heartburn? I am wondering why the GI doc has her on Prilosec and suggests to increase the dosage. Cara > > Hello every one, > > I hope every one is doing well. On the 15th Taniea had a GI appointment with >Dr. Altaf at the OU Children's medical center in OKC. It went relitively well >but this is what he had to offer. He wants to start with a barium swallow to see > >what is going on after that depending on the results do another motility test >and if surgery is an option then that would be the next step. He said I needed >to increase her prilosec to two times a day at least for a month. He also said >that the pain she is experiencing sounds as if her esophagus is contracting to >get the stuck food down. Last night however I can say with out a doubt she had a > >spasm she rated it a 10 and we tried stretching and ice packs which seemed to >provide some relief. > > > She is reguritating again and food is getting stuck even with lots of fluids. > If you all have any advice please feel free to offer I am always reading. > > Thank you > Shamira > Quote Link to comment Share on other sites More sharing options...
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