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Reflux and diet

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  • lori cutillo
    Happy new year everyone!  Daniel s reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son s
    Message 1 of 17 , Jan 1, 2010
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      Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.
       
      Thanks, Lori and Daniel, age 10 with mito

    • lori cutillo
      Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent. 
      Message 2 of 17 , Jan 1, 2010
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        Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
         
        Lori


        From: Pattie Curran <catholicmomof3@...>
        To: Mito@yahoogroups.com
        Sent: Fri, January 1, 2010 8:39:06 AM
        Subject: RE: [Mito] Reflux and diet

         

        No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

         

        My youngest is on 30mg of Prevacid twice a day, too. 

         

        Peace be with you,

         

        Pattie

        I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


        From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
        Sent: Friday, January 01, 2010 7:49 AM
        To: mito
        Subject: [ Mito ] Reflux and diet

         

         

        Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

         

        Thanks, Lori and Daniel, age 10 with mito

         


      • Catherine Boyle
        Hi Lori, Have you tried digestive enzymes and probiotics? Cathy ... Hi Lori, Have you tried digestive enzymes and probiotics? Cathy lori cutillo wrote: Hey
        Message 3 of 17 , Jan 1, 2010
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          Hi Lori,

          Have you tried digestive enzymes and probiotics?

          Cathy

          lori cutillo wrote:
          Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
           
          Lori


          From: Pattie Curran <catholicmomof3@...>
          To: Mito@yahoogroups.com
          Sent: Fri, January 1, 2010 8:39:06 AM
          Subject: RE: [Mito] Reflux and diet

           

          No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

           

          My youngest is on 30mg of Prevacid twice a day, too. 

           

          Peace be with you,

           

          Pattie

          I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


          From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
          Sent: Friday, January 01, 2010 7:49 AM
          To: mito
          Subject: [ Mito ] Reflux and diet

           

           

          Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

           

          Thanks, Lori and Daniel, age 10 with mito

           



        • Pattie Curran
          My boys are on both - they have pancreatic insufficiency and need enzymes for that and we love probiotics! Peace be with you, Pattie I will honour Christmas in
          Message 4 of 17 , Jan 1, 2010
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            My boys are on both – they have pancreatic insufficiency and need enzymes for that and we love probiotics!

             

            Peace be with you,

             

            Pattie

            I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


            From: Mito@yahoogroups.com [mailto: Mito@yahoogroups.com ] On Behalf Of Catherine Boyle
            Sent: Friday, January 01, 2010 10:14 AM
            To: Mito@yahoogroups.com
            Subject: Re: [ Mito ] Reflux and diet

             

             

            Hi Lori,

            Have you tried digestive enzymes and probiotics?

            Cathy

            lori cutillo wrote:

            Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.

             

            Lori

             


            From: Pattie Curran <catholicmomof3@ gmail.com>
            To: Mito@yahoogroups. com
            Sent: Fri, January 1, 2010 8:39:06 AM
            Subject: RE: [ Mito ] Reflux and diet

             

            No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

             

            My youngest is on 30mg of Prevacid twice a day, too. 

             

            Peace be with you,

             

            Pattie

            I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


            From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
            Sent: Friday, January 01, 2010 7:49 AM
            To: mito
            Subject: [ Mito ] Reflux and diet

             

             

            Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

             

            Thanks, Lori and Daniel, age 10 with mito

             

             

             

          • lori cutillo
            No.  Not sure what they are, or where you get them.  Have you tried them?  ________________________________ From: Catherine Boyle
            Message 5 of 17 , Jan 1, 2010
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              No.  Not sure what they are, or where you get them.  Have you tried them? 


              From: Catherine Boyle <ccampboyle@...>
              To: Mito@yahoogroups.com
              Sent: Fri, January 1, 2010 10:14:18 AM
              Subject: Re: [Mito] Reflux and diet

               

              Hi Lori,

              Have you tried digestive enzymes and probiotics?

              Cathy

              lori cutillo wrote:

              Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
               
              Lori


              From: Pattie Curran <catholicmomof3@ gmail.com>
              To: Mito@yahoogroups. com
              Sent: Fri, January 1, 2010 8:39:06 AM
              Subject: RE: [Mito] Reflux and diet

               

              No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

               

              My youngest is on 30mg of Prevacid twice a day, too. 

               

              Peace be with you,

               

              Pattie

              I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


              From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
              Sent: Friday, January 01, 2010 7:49 AM
              To: mito
              Subject: [ Mito ] Reflux and diet

               

               

              Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

               

              Thanks, Lori and Daniel, age 10 with mito

               




            • Catherine Boyle
              Hi Lori, Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase
              Message 6 of 17 , Jan 1, 2010
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                Hi Lori,

                Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase (prescription), no-fenol (OTC, helps digest phenols), and carb digest (OTC, obviously for carbs). Overall, he has better behavior, better language, and undoubtedly feels better.

                Erin also takes no-fenol, carb digest, and a broad spectrum multi-enzyme. With her, they are part of our attempt to help with her panic attacks, which seem driven by problems with glycolysis, which leads to build up of lactic acid.  We think the carb digest helps with glycolysis and the no-fenol is because phenolic compounds uncouple oxidative phosphorylation.

                I take a broad spectrum multi-enzyme before anything with dairy. It seems to help.

                Cathy

                lori cutillo wrote:
                No.  Not sure what they are, or where you get them.  Have you tried them? 


                From: Catherine Boyle <ccampboyle@...>
                To: Mito@yahoogroups.com
                Sent: Fri, January 1, 2010 10:14:18 AM
                Subject: Re: [Mito] Reflux and diet

                 

                Hi Lori,

                Have you tried digestive enzymes and probiotics?

                Cathy

                lori cutillo wrote:

                Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
                 
                Lori


                From: Pattie Curran <catholicmomof3@ gmail.com>
                To: Mito@yahoogroups. com
                Sent: Fri, January 1, 2010 8:39:06 AM
                Subject: RE: [Mito] Reflux and diet

                 

                No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

                 

                My youngest is on 30mg of Prevacid twice a day, too. 

                 

                Peace be with you,

                 

                Pattie

                I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


                From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
                Sent: Friday, January 01, 2010 7:49 AM
                To: mito
                Subject: [ Mito ] Reflux and diet

                 

                 

                Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                 

                Thanks, Lori and Daniel, age 10 with mito

                 





              • jjbeck419
                HI Lori. I have always had reflux. As a baby I was always kept in an upright or semi upright position (slept in a car seat). Ava was the same and I also kept
                Message 7 of 17 , Jan 1, 2010
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                  HI Lori.
                  I have always had reflux. As a baby I was always kept in an upright or semi upright position (slept in a car seat).
                  Ava was the same and I also kept her upright.
                  I eventually learned my reflux came from a motility disorder (gastroparesis).
                  When I take care of that I do not have the reflux.
                  Ava is the same.
                  I agree with the others RE probiotics & enzymes.

                  Dietary changes help tremendously for me & my DD. Much more than any of the meds I have tried in the past.
                  I avoid certain fiber types (but not all fiber as some GIs instruct), I avoid consuming too much dairy & sugar.
                  For me a diet high in brown rice & veggies helps.

                  DD is on LGIT for seizure control. Her diet is very similar to SCD (specific carb diet). This has helped many of her GI issues.

                  You mentioned rice milk, this actually makes me very refluxy.

                  HTH,

                  J



                  --- In Mito@yahoogroups.com, lori cutillo <loricutillo@...> wrote:
                  >
                  > Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.
                  >
                  > Thanks, Lori and Daniel, age 10 with mito
                  >
                • KA
                  Absolutely.  My DD was on the PPI s for a long while - we changed her to GFCF (no wheat or dairy-simple explanation, rice milk for cooking but not drinking)
                  Message 8 of 17 , Jan 1, 2010
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                    Absolutely.
                     My DD was on the PPI's for a long while - we changed her to GFCF (no wheat or dairy-simple explanation, rice milk for cooking but not drinking) and while it improved she still had bouts of reflux. I added chewable children's digestive enzymes before each meal, which help to break down food for stomach, and that made a world of difference for reflux. She rarely gets hiccups - her tell tale sign of relux. If he has g-tube you could easily dissolve in water or applesauce. Since DE are plant based natural enzymes, there is minimal risk, unless sensitive to one of ingredients or plants these originate from. Cheap like $6-7 for 120 tablets at local health food store. Enzymedica also has options and wealth of information about Digestive Enzymes.  www.enzymestuff.com
                     
                    Kelly-Ann in MN

                  • lori cutillo
                    Thanks.  Where do you buy them? ________________________________ From: Catherine Boyle To: Mito@yahoogroups.com Sent: Fri, January 1,
                    Message 9 of 17 , Jan 1, 2010
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                      Thanks.  Where do you buy them?


                      From: Catherine Boyle <ccampboyle@...>
                      To: Mito@yahoogroups.com
                      Sent: Fri, January 1, 2010 10:50:54 AM
                      Subject: Re: [Mito] Reflux and diet

                       

                      Hi Lori,

                      Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase (prescription) , no-fenol (OTC, helps digest phenols), and carb digest (OTC, obviously for carbs). Overall, he has better behavior, better language, and undoubtedly feels better.

                      Erin also takes no-fenol, carb digest, and a broad spectrum multi-enzyme. With her, they are part of our attempt to help with her panic attacks, which seem driven by problems with glycolysis, which leads to build up of lactic acid.  We think the carb digest helps with glycolysis and the no-fenol is because phenolic compounds uncouple oxidative phosphorylation.

                      I take a broad spectrum multi-enzyme before anything with dairy. It seems to help.

                      Cathy

                      lori cutillo wrote:

                      No.  Not sure what they are, or where you get them.  Have you tried them? 


                      From: Catherine Boyle <ccampboyle@comcast. net>
                      To: Mito@yahoogroups. com
                      Sent: Fri, January 1, 2010 10:14:18 AM
                      Subject: Re: [Mito] Reflux and diet

                       

                      Hi Lori,

                      Have you tried digestive enzymes and probiotics?

                      Cathy

                      lori cutillo wrote:

                      Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
                       
                      Lori


                      From: Pattie Curran <catholicmomof3@ gmail.com>
                      To: Mito@yahoogroups. com
                      Sent: Fri, January 1, 2010 8:39:06 AM
                      Subject: RE: [Mito] Reflux and diet

                       

                      No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

                       

                      My youngest is on 30mg of Prevacid twice a day, too. 

                       

                      Peace be with you,

                       

                      Pattie

                      I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


                      From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
                      Sent: Friday, January 01, 2010 7:49 AM
                      To: mito
                      Subject: [ Mito ] Reflux and diet

                       

                       

                      Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                       

                      Thanks, Lori and Daniel, age 10 with mito

                       






                    • Doug & Melody Pohla
                      My kids all have reflux, as do I, and all 4 of us are on medication for delayed gastric emptying, which is a motility issue. There are several different meds
                      Message 10 of 17 , Jan 1, 2010
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                        My kids all have reflux, as do I,  and all 4 of us are on medication for delayed gastric emptying, which is a motility issue.  There are several different meds you can take (Reglan, Erythromycin, Bethanechol) that can help the motility improve.  When the food moves through the stomach faster, there is less in the stomach to reflux up later.  Also, we have found that we sometimes need an H2 blocker in addition to the PPI we take.  PPI’s are medications that turn off the proton pumps that produce acid and H2 blockers just work to reduce the level of acidity in the stomach when it is given. Thus, the 2 different types of medications can be taken in conjunction with one another.  PPI’s are meds like Prevacid, Prilosec, Nexium, Protonix, and AcipHex  and H2 blockers are meds like Axid, Zantac, Tagamet, and Pepcid.  I believe you just cannot take them in the same dose, but you can take them at different times.  We dose our H2 blocker at bedtime (PPI doses at breakfast and dinner) to prevent the reflux from giving them problems at bedtime.

                         

                        Also, my reflux can only be treated by Prevacid capsules.  I have tried every single other PPI on the market and they just do not work for me.  I have even tried the Prevacid Solutabs that my kids use very successfully and those do not work for me either.  It may just be that you need to experiment around with some other meds to see if those might be more effective for him.

                         

                        Some other things to consider is why he is having a flare.  I know my youngest (also named Daniel!) has had a lot of reflux trouble lately since he has been teething.  The increased saliva load he is dealing with is causing his reflux to flare.  He also has trouble when he has a cold and has a lot of drainage down the back of his throat.  The mucous causes a reflux flare as well.  We have found that giving him Zyrtec to control the drainage has helped us keep his reflux under much better control.  I had really bad reflux flares for about a month after my dad passed in Nov.  I was just under a lot of emotional stress and it really took a toll on me healthwise.  Once things settled down a little, the reflux has been better.  If you can pinpoint the reason for the flare, it will be so helpful in treating it.

                         

                        Hope this helps.  Good luck.

                         

                         

                        Melody, mom to 3 little boys with Mito, complex I

                         

                         

                        From: Mito@yahoogroups.com [mailto:Mito@yahoogroups.com] On Behalf Of lori cutillo
                        Sent: Friday, January 01, 2010 6:49 AM
                        To: mito
                        Subject: [Mito] Reflux and diet

                         

                         

                        Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                         

                        Thanks, Lori and Daniel, age 10 with mito

                         

                      • lori cutillo
                        Thanks!  Daniel has been on reglan in past.  I will inquire of his new GI whether a motility drug might be tried. I m definitely going to look into
                        Message 11 of 17 , Jan 1, 2010
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                          Thanks!  Daniel has been on reglan in past.  I will inquire of his new GI whether a motility drug might be tried.
                           
                          I'm definitely going to look into probiotics too!  I will need to read up on this as I know nothing about it.
                           
                          Thanks everyone, Lori


                          From: Doug & Melody Pohla <pohlarbearpack@...>
                          To: Mito@yahoogroups.com
                          Sent: Fri, January 1, 2010 12:20:26 PM
                          Subject: RE: [Mito] Reflux and diet

                           

                          My kids all have reflux, as do I,  and all 4 of us are on medication for delayed gastric emptying, which is a motility issue.  There are several different meds you can take (Reglan, Erythromycin, Bethanechol) that can help the motility improve.  When the food moves through the stomach faster, there is less in the stomach to reflux up later.  Also, we have found that we sometimes need an H2 blocker in addition to the PPI we take.  PPI’s are medications that turn off the proton pumps that produce acid and H2 blockers just work to reduce the level of acidity in the stomach when it is given. Thus, the 2 different types of medications can be taken in conjunction with one another.  PPI’s are meds like Prevacid, Prilosec, Nexium, Protonix, and AcipHex  and H2 blockers are meds like Axid, Zantac, Tagamet, and Pepcid.  I believe you just cannot take them in the same dose, but you can take them at different times.  We dose our H2 blocker at bedtime (PPI doses at breakfast and dinner) to prevent the reflux from giving them problems at bedtime.

                           

                          Also, my reflux can only be treated by Prevacid capsules.  I have tried every single other PPI on the market and they just do not work for me.  I have even tried the Prevacid Solutabs that my kids use very successfully and those do not work for me either.  It may just be that you need to experiment around with some other meds to see if those might be more effective for him.

                           

                          Some other things to consider is why he is having a flare.  I know my youngest (also named Daniel!) has had a lot of reflux trouble lately since he has been teething.  The increased saliva load he is dealing with is causing his reflux to flare.  He also has trouble when he has a cold and has a lot of drainage down the back of his throat.  The mucous causes a reflux flare as well.  We have found that giving him Zyrtec to control the drainage has helped us keep his reflux under much better control.  I had really bad reflux flares for about a month after my dad passed in Nov.  I was just under a lot of emotional stress and it really took a toll on me healthwise.  Once things settled down a little, the reflux has been better.  If you can pinpoint the reason for the flare, it will be so helpful in treating it.

                           

                          Hope this helps.  Good luck.

                           

                           

                          Melody, mom to 3 little boys with Mito, complex I

                           

                           

                          From: Mito@yahoogroups. com [mailto:Mito@ yahoogroups. com] On Behalf Of lori cutillo
                          Sent: Friday, January 01, 2010 6:49 AM
                          To: mito
                          Subject: [Mito] Reflux and diet

                           

                           

                          Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                           

                          Thanks, Lori and Daniel, age 10 with mito

                           


                        • Wendy Bauer
                          my son can t take reglan it cause so much pain that he doubles over from it. ________________________________ From: lori cutillo To:
                          Message 12 of 17 , Jan 1, 2010
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                            my son can't take reglan it cause so much pain that he doubles over from it.


                            From: lori cutillo <loricutillo@...>
                            To: Mito@yahoogroups.com
                            Sent: Fri, January 1, 2010 12:42:29 PM
                            Subject: Re: [Mito] Reflux and diet

                             

                            Thanks!  Daniel has been on reglan in past.  I will inquire of his new GI whether a motility drug might be tried.
                             
                            I'm definitely going to look into probiotics too!  I will need to read up on this as I know nothing about it.
                             
                            Thanks everyone, Lori


                            From: Doug & Melody Pohla <pohlarbearpack@ comcast.net>
                            To: Mito@yahoogroups. com
                            Sent: Fri, January 1, 2010 12:20:26 PM
                            Subject: RE: [Mito] Reflux and diet

                             

                            My kids all have reflux, as do I,  and all 4 of us are on medication for delayed gastric emptying, which is a motility issue.  There are several different meds you can take (Reglan, Erythromycin, Bethanechol) that can help the motility improve.  When the food moves through the stomach faster, there is less in the stomach to reflux up later.  Also, we have found that we sometimes need an H2 blocker in addition to the PPI we take.  PPI’s are medications that turn off the proton pumps that produce acid and H2 blockers just work to reduce the level of acidity in the stomach when it is given. Thus, the 2 different types of medications can be taken in conjunction with one another.  PPI’s are meds like Prevacid, Prilosec, Nexium, Protonix, and AcipHex  and H2 blockers are meds like Axid, Zantac, Tagamet, and Pepcid.  I believe you just cannot take them in the same dose, but you can take them at different times.  We dose our H2 blocker at bedtime (PPI doses at breakfast and dinner) to prevent the reflux from giving them problems at bedtime.

                             

                            Also, my reflux can only be treated by Prevacid capsules.  I have tried every single other PPI on the market and they just do not work for me.  I have even tried the Prevacid Solutabs that my kids use very successfully and those do not work for me either.  It may just be that you need to experiment around with some other meds to see if those might be more effective for him.

                             

                            Some other things to consider is why he is having a flare.  I know my youngest (also named Daniel!) has had a lot of reflux trouble lately since he has been teething.  The increased saliva load he is dealing with is causing his reflux to flare.  He also has trouble when he has a cold and has a lot of drainage down the back of his throat.  The mucous causes a reflux flare as well.  We have found that giving him Zyrtec to control the drainage has helped us keep his reflux under much better control.  I had really bad reflux flares for about a month after my dad passed in Nov.  I was just under a lot of emotional stress and it really took a toll on me healthwise.  Once things settled down a little, the reflux has been better.  If you can pinpoint the reason for the flare, it will be so helpful in treating it.

                             

                            Hope this helps.  Good luck.

                             

                             

                            Melody, mom to 3 little boys with Mito, complex I

                             

                             

                            From: Mito@yahoogroups. com [mailto:Mito@ yahoogroups. com] On Behalf Of lori cutillo
                            Sent: Friday, January 01, 2010 6:49 AM
                            To: mito
                            Subject: [Mito] Reflux and diet

                             

                             

                            Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                             

                            Thanks, Lori and Daniel, age 10 with mito

                             



                          • Catherine Boyle
                            We buy probiotics (sorry, forgot to discuss those -- Terry takes them) at either the Vitamin Shop on Middlesex Turnpike (Lowell Street) near the Burlington
                            Message 13 of 17 , Jan 1, 2010
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                              We buy probiotics (sorry, forgot to discuss those -- Terry takes them) at either the Vitamin Shop on Middlesex Turnpike (Lowell Street) near the Burlington Mall, at Whole Foods, or at the Natural Food Exchange (Route 28 in Reading). The brand is Kyodophilus. Whole Foods is closest, but they only sell the little bottle. Kyodophilus is expensive, so we buy the big bottle, which is cheaper per capsule. I would start with the small, though, to see if it helps. Important note: take probiotics at least an hour away from enzymes, as some enzymes will break down probiotics. We give enzymes about 20 minutes before meals and take probiotics after meals.

                              The Natural Food Exchange has had No-Fenol in the past, the other stores have not. We generally get it mail order, from Houston Nutriceuticals. https://www.houston-enzymes.com/store/product.php?p=7&c=1 Terry takes the bulk powder, but Erin takes the capsules. It also comes in a chewable.

                              Carb Digest comes from Kirkman's, also on line. http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@84@Product_Group_ID@... Erin's multi-enzyme also comes from Kirkman's, http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@87@Product_Group_ID@... The nice thing about Kirkman's is that you can order small trial sizes to see how it's going to work.

                              I'm kind of lazy about the multi-enzyme I take: I just use Whole Food's Wholezyme. It's cheaper, and I don't have to mail order it, but it is not as powerful.

                              Hope this helps.

                              Cathy


                              lori cutillo wrote:
                              Thanks.  Where do you buy them?


                              From: Catherine Boyle <ccampboyle@...>
                              To: Mito@yahoogroups.com
                              Sent: Fri, January 1, 2010 10:50:54 AM
                              Subject: Re: [Mito] Reflux and diet

                               

                              Hi Lori,

                              Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase (prescription) , no-fenol (OTC, helps digest phenols), and carb digest (OTC, obviously for carbs). Overall, he has better behavior, better language, and undoubtedly feels better.

                              Erin also takes no-fenol, carb digest, and a broad spectrum multi-enzyme. With her, they are part of our attempt to help with her panic attacks, which seem driven by problems with glycolysis, which leads to build up of lactic acid.  We think the carb digest helps with glycolysis and the no-fenol is because phenolic compounds uncouple oxidative phosphorylation.

                              I take a broad spectrum multi-enzyme before anything with dairy. It seems to help.

                              Cathy

                              lori cutillo wrote:

                              No.  Not sure what they are, or where you get them.  Have you tried them? 


                              From: Catherine Boyle <ccampboyle@comcast. net>
                              To: Mito@yahoogroups. com
                              Sent: Fri, January 1, 2010 10:14:18 AM
                              Subject: Re: [Mito] Reflux and diet

                               

                              Hi Lori,

                              Have you tried digestive enzymes and probiotics?

                              Cathy

                              lori cutillo wrote:

                              Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
                               
                              Lori


                              From: Pattie Curran <catholicmomof3@ gmail.com>
                              To: Mito@yahoogroups. com
                              Sent: Fri, January 1, 2010 8:39:06 AM
                              Subject: RE: [Mito] Reflux and diet

                               

                              No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

                               

                              My youngest is on 30mg of Prevacid twice a day, too. 

                               

                              Peace be with you,

                               

                              Pattie

                              I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


                              From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
                              Sent: Friday, January 01, 2010 7:49 AM
                              To: mito
                              Subject: [ Mito ] Reflux and diet

                               

                               

                              Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                               

                              Thanks, Lori and Daniel, age 10 with mito

                               







                            • Catherine Boyle
                              FYI, Terry doesn t take the OTC broad spectrum just because he takes the prescription ultrase. Cathy ... FYI, Terry doesn t take the OTC broad spectrum just
                              Message 14 of 17 , Jan 1, 2010
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                                FYI, Terry doesn't take the OTC broad spectrum just because he takes the prescription ultrase.

                                Cathy

                                lori cutillo wrote:
                                Thanks.  Where do you buy them?


                                From: Catherine Boyle <ccampboyle@...>
                                To: Mito@yahoogroups.com
                                Sent: Fri, January 1, 2010 10:50:54 AM
                                Subject: Re: [Mito] Reflux and diet

                                 

                                Hi Lori,

                                Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase (prescription) , no-fenol (OTC, helps digest phenols), and carb digest (OTC, obviously for carbs). Overall, he has better behavior, better language, and undoubtedly feels better.

                                Erin also takes no-fenol, carb digest, and a broad spectrum multi-enzyme. With her, they are part of our attempt to help with her panic attacks, which seem driven by problems with glycolysis, which leads to build up of lactic acid.  We think the carb digest helps with glycolysis and the no-fenol is because phenolic compounds uncouple oxidative phosphorylation.

                                I take a broad spectrum multi-enzyme before anything with dairy. It seems to help.

                                Cathy

                                lori cutillo wrote:

                                No.  Not sure what they are, or where you get them.  Have you tried them? 


                                From: Catherine Boyle <ccampboyle@comcast. net>
                                To: Mito@yahoogroups. com
                                Sent: Fri, January 1, 2010 10:14:18 AM
                                Subject: Re: [Mito] Reflux and diet

                                 

                                Hi Lori,

                                Have you tried digestive enzymes and probiotics?

                                Cathy

                                lori cutillo wrote:

                                Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
                                 
                                Lori


                                From: Pattie Curran <catholicmomof3@ gmail.com>
                                To: Mito@yahoogroups. com
                                Sent: Fri, January 1, 2010 8:39:06 AM
                                Subject: RE: [Mito] Reflux and diet

                                 

                                No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

                                 

                                My youngest is on 30mg of Prevacid twice a day, too. 

                                 

                                Peace be with you,

                                 

                                Pattie

                                I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


                                From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
                                Sent: Friday, January 01, 2010 7:49 AM
                                To: mito
                                Subject: [ Mito ] Reflux and diet

                                 

                                 

                                Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                                 

                                Thanks, Lori and Daniel, age 10 with mito

                                 







                              • lori cutillo
                                Thanks Cathy.  You know, Dan is not even on the mito cocktail.  His new neurologist prescribed carnitor (which he took ages 1-5 or so).  I m guessing I
                                Message 15 of 17 , Jan 1, 2010
                                • 0 Attachment
                                  Thanks Cathy.  You know, Dan is not even on the mito cocktail.  His new neurologist prescribed carnitor (which he took ages 1-5 or so).  I'm guessing I should add one thing at a time so that I am able to determine what makes a difference.  The last time Dan took Coq10, he became hyperactive.  His function did not improve.  Just his general motoric activity increased.  Anyway . . thanks!


                                  From: Catherine Boyle <ccampboyle@...>
                                  To: Mito@yahoogroups.com
                                  Sent: Fri, January 1, 2010 3:52:02 PM
                                  Subject: Re: [Mito] Reflux and diet

                                   

                                  We buy probiotics (sorry, forgot to discuss those -- Terry takes them) at either the Vitamin Shop on Middlesex Turnpike (Lowell Street) near the Burlington Mall, at Whole Foods, or at the Natural Food Exchange (Route 28 in Reading). The brand is Kyodophilus. Whole Foods is closest, but they only sell the little bottle. Kyodophilus is expensive, so we buy the big bottle, which is cheaper per capsule. I would start with the small, though, to see if it helps. Important note: take probiotics at least an hour away from enzymes, as some enzymes will break down probiotics. We give enzymes about 20 minutes before meals and take probiotics after meals.

                                  The Natural Food Exchange has had No-Fenol in the past, the other stores have not. We generally get it mail order, from Houston Nutriceuticals. https://www. houston-enzymes. com/store/ product.php? p=7&c=1 Terry takes the bulk powder, but Erin takes the capsules. It also comes in a chewable.

                                  Carb Digest comes from Kirkman's, also on line. http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@84@Product_Group_ID@... Erin's multi-enzyme also comes from Kirkman's, http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@87@Product_Group_ID@... The nice thing about Kirkman's is that you can order small trial sizes to see how it's going to work.

                                  I'm kind of lazy about the multi-enzyme I take: I just use Whole Food's Wholezyme. It's cheaper, and I don't have to mail order it, but it is not as powerful.

                                  Hope this helps.

                                  Cathy


                                  lori cutillo wrote:

                                  Thanks.  Where do you buy them?


                                  From: Catherine Boyle <ccampboyle@comcast. net>
                                  To: Mito@yahoogroups. com
                                  Sent: Fri, January 1, 2010 10:50:54 AM
                                  Subject: Re: [Mito] Reflux and diet

                                   

                                  Hi Lori,

                                  Terry takes them. Believe it or not, he was never able to learn nouns until he went on enzymes. He takes three kinds of enzymes -- ultrase (prescription) , no-fenol (OTC, helps digest phenols), and carb digest (OTC, obviously for carbs). Overall, he has better behavior, better language, and undoubtedly feels better.

                                  Erin also takes no-fenol, carb digest, and a broad spectrum multi-enzyme. With her, they are part of our attempt to help with her panic attacks, which seem driven by problems with glycolysis, which leads to build up of lactic acid.  We think the carb digest helps with glycolysis and the no-fenol is because phenolic compounds uncouple oxidative phosphorylation.

                                  I take a broad spectrum multi-enzyme before anything with dairy. It seems to help.

                                  Cathy

                                  lori cutillo wrote:

                                  No.  Not sure what they are, or where you get them.  Have you tried them? 


                                  From: Catherine Boyle <ccampboyle@comcast. net>
                                  To: Mito@yahoogroups. com
                                  Sent: Fri, January 1, 2010 10:14:18 AM
                                  Subject: Re: [Mito] Reflux and diet

                                   

                                  Hi Lori,

                                  Have you tried digestive enzymes and probiotics?

                                  Cathy

                                  lori cutillo wrote:

                                  Hey Pattie,  Yes, we have eliminated things at various times with no results.  But I keep coming back to it thinking it would help if I were consistent.  Where do you get all your cool quotes?  I love quotes.  Was just getting ready to add a couple more to my FB page.
                                   
                                  Lori


                                  From: Pattie Curran <catholicmomof3@ gmail.com>
                                  To: Mito@yahoogroups. com
                                  Sent: Fri, January 1, 2010 8:39:06 AM
                                  Subject: RE: [Mito] Reflux and diet

                                   

                                  No luck at all and I have two kids with reflux—one is a puker and one gets severe chest pain—  so bad that we’ve been in ER b/c they wanted to check out his heart just to be sure.  My youngest does get some pain—especially when he has concurrent esophagitis.    We have tried dairy-free, acid-free (i.e. no OJ or Tomato sauce) no spicy food, no greasy food, no chocolate, etc…….   for us, it did not help. 

                                   

                                  My youngest is on 30mg of Prevacid twice a day, too. 

                                   

                                  Peace be with you,

                                   

                                  Pattie

                                  I will honour Christmas in my heart, and try to keep it all the year." ~ Charles Dickens  (From 'A Christmas Carol')


                                  From: Mito@yahoogroups. com [mailto: Mito@yahoogroups. com ] On Behalf Of lori cutillo
                                  Sent: Friday, January 01, 2010 7:49 AM
                                  To: mito
                                  Subject: [ Mito ] Reflux and diet

                                   

                                   

                                  Happy new year everyone!  Daniel's reflux is acting up again--lots of vomiting and clothes changes.  A friend told me that she has controlled her son's reflux with diet.  She eliminated juice and milk (and other things I can't off hand recall).  She gives him rice milk instead of cow's milk.  Has anyone had success improving reflux with dietary measures?  Dan is already on 2 30 mg. prevacid capsules.  His reflux seems to be episodic--he goes through very bad periods and then good periods for several months--this might be mito related, I don't know.

                                   

                                  Thanks, Lori and Daniel, age 10 with mito

                                   








                                • Stacey Browning
                                  Good info on reflux being share...thanks! Reflux affects my almost 3-yr old terribly. He practically stopped drinking & eating this summer. GI said it was
                                  Message 16 of 17 , Jan 3, 2010
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                                    Good info on reflux being share…thanks! Reflux affects my almost 3-yr old terribly. He practically stopped drinking & eating this summer. GI said it was neurological and neurology said it was GI. With that finger pointing and up to 5 hours of crying from pain a day, I turned to our pediatrician who on a whim changed my son from Prevacid to Prilosec. HUGE improvement. In 4 days feeding, demeanor and sleep improved. We still have flare ups, but nothing like it was. So…try diet, supplements and medication changes and see if anything works. I’m grateful for where our son is now in this area. www.itsbrowning.blogspot.com

                                     

                                     

                                     

                                     

                                     

                                    
                                    This message, including any attachments, may contain information
                                    which is confidential and privileged. Unless you are the addressee (or 
                                    authorized to receive for the addressee), you may not read, use, copy 
                                    or disclose to anyone the message, its attachments, or any information 
                                    contained therein. If you have received the message in error, please 
                                    advise the sender by reply e-mail and delete the message and any 
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                                  • lori cutillo
                                    Interesting.  Thanks for sharing this tip.  I have lots of new ideas to try. ________________________________ From: Stacey Browning
                                    Message 17 of 17 , Jan 3, 2010
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                                      Interesting.  Thanks for sharing this tip.  I have lots of new ideas to try.


                                      From: Stacey Browning <sbrowning@...>
                                      To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                                      Sent: Sun, January 3, 2010 6:35:55 PM
                                      Subject: [Mito] Re:Reflux and diet

                                       

                                      Good info on reflux being share…thanks! Reflux affects my almost 3-yr old terribly. He practically stopped drinking & eating this summer. GI said it was neurological and neurology said it was GI. With that finger pointing and up to 5 hours of crying from pain a day, I turned to our pediatrician who on a whim changed my son from Prevacid to Prilosec. HUGE improvement. In 4 days feeding, demeanor and sleep improved. We still have flare ups, but nothing like it was. So…try diet, supplements and medication changes and see if anything works. I’m grateful for where our son is now in this area. www.itsbrowning. blogspot. com

                                       

                                       

                                       

                                       

                                       

                                      This message, including any attachments, may contain information
                                      which is confidential and privileged. Unless you are the addressee (or 
                                      authorized to receive for the addressee), you may not read, use, copy 
                                      or disclose to anyone the message, its attachments, or any information 
                                      contained therein. If you have received the message in error, please 
                                      advise the sender by reply e-mail and delete the message and any 
                                      attachments.
                                      

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