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Re: Zelnorm

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  • Steve and Denise
    Hi Kass, Sorry for the delay in the reply but I am on digest and it takes me a while sometimes to get through everything till I find something addressed to me.
    Message 1 of 18 , Aug 1, 2006
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      Hi Kass,
               Sorry for the delay in the reply but I am on digest and it takes me a while sometimes to get through everything till I find something addressed to me.
              I should say, Miranda's problem is more with the food not moving through her.  She is J tube fed only and if she does try to orally eat anythinng we end up draining it out hours later through her G tube because she is gagging and in pain. So I would say the Zelnorm has more helped with food motility if that makes sense. But she also does take Miralax, Gastrocrom, prevacid, zantac, periactin and Elavil, all for stomach related probelms . So I do know it's the combination of everything that helps her. And I also know she still has signifigant GI issues she suffers with in spite of all the meds. She takes Zofran pretty much daily for nausea and we drain her tummy often. So no, Zelnorm did not 'cure' her, but it does help.
            I hope this makes sense and does not discourage you, because like I said, it does make a huge difference for her when she takes it.
             Be warned though, its EXPENSIVE!!
      Denise   

      Re: Zelnorm

      Posted by: "Kass" kass@...   kasskids

      Sun Jul 30, 2006 9:39 pm (PST)

      Thanks for sharing this with me Denise!! Very exciting to hear it's
      helped Miranda so much. I'll take anything that helps, especially with
      no side effects!!

      Wondering... ...is she taking any other motility meds along with it??
      I've got to call tomorrow because it dawned on me this weekend that I am
      not clear whether Chance should continue on the Miralax and Dulcolax
      while we try the Zelnorm or not.

      Thanks SO much for sharing with me. :-)

      -- BIG hugs --
      Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
      Life is not measured by the breaths we take, but by the moments that
      take our breath away - Unknown

      Steve and Denise wrote:

      >
      >

      Hi Kass, Miranda has been on Zelnorm for over 3 years now. It
      helps her tremendously. When we had to with hold it for a week
      before her manometry she was so sick without it. She is 9 1/2 years
      old, weighs 65 lbs and takes 6mg twice a day. I have not seen any
      side effects from it. I hope it brings Chance relief. Denise

      > [Add FUN to your email - CLICK HERE!]
      >
      Add FUN to your email - CLICK HERE!
    • Kass
      Dear Rose, Please forgive my delay in responding. Things have been a little crazy over here and I am just getting the chance to play catch up this evening
      Message 2 of 18 , Aug 11, 2006
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        Dear Rose,

        Please forgive my delay in responding.  Things have been a little crazy over here and I am just getting the chance to play catch up this evening finally!!

        Thanks for continuing to share with me on this topic.  I sure wish Miralax would cause Chance to poop all day!!  We're on a 4-5 day cycle right now on one and one half capfuls of Miralax, 4 Dulcolax a week, AND the Zelnorm we were finally able to start this past Tuesday.  UGH!!  I am continuing to hold out some hope that the Zelnorm might suddenly start making a difference, but it's fading fast as the days go on (he DID go today, 3 times and all three "toilet pluggers" as we like to call the big ones, so maybe, just maybe.....real test will be whether he goes again anytime in the next four days or not).  I will keep this information you shared with me and give it a try to see what happens.

        Thanks again so much for your help.

        -- BIG hugs --
        Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
        Life is not measured by the breaths we take, but by the moments that take our breath away - Unknown

        rosemort2004 wrote:

        The trick with senekot is in the dose, it has to be just right, and
        it will be way more than the recommended dose. It works well
        combined with a stool softener like benefiber/Mucilax/ Metamucil,
        just to keep everything in one soft bulky mass, so that the Senekot
        can push it out in one go (ie 1 lge bm per day). I would not
        personally suggest Miralax, it is inclined to cause pooping all day,
        but I know someone will leap to it's defense LOL.
        Anna was on 5 senekot tabs a day before her appendicostomy (yes,
        that's high!). If you want to try senekot, pick a dose and increase
        it by 1/2 a tab a day till you get the desired result, or to avoid
        getting blocked in the mean time start high and back off by 1/2 a
        tab a day. The first day they don't poop, go up by 1/2 the next day.

        As to fears, well Anna has dyspraxia and I would never have imagined
        she would cath her stoma,(or deal with half the things she has) but
        we got there in small increments and it's great!

        Best wishes. Rose

        --- In Mito@yahoogroups. com, Kass <kass@...> wrote:
        >
        > Thanks for taking the time to respond!!
        >
        > Unfortunatly, because Chance's constipation is in the ascending
        colon
        > (first part), it's too far away from the rectum for enema's to
        have any
        > effect. I've talked with Anne about Asher's cecostomy and it
        seems like
        > there is a chance something like this might be an option at some
        point
        > though. Not only would I love to get Chance off all these meds,
        he is
        > SO ready for that to be the case. It's shocking for me to say
        this,
        > knowing Chance's fears, but I really think he'd jump at the chance
        to do
        > something like this if given the option. I know we need to try
        all med
        > possibilities before though, just so we know we've tried it all
        and this
        > was the only other choice.
        >
        > I know we've tried Senekot in the past, but need to go back and
        look at
        > what the whole regime at the time was...not sure if he was on the
        > Miralax then or not. Hopefully the new GI will have some further
        ideas
        > too.
        >
        > As for the enema's and suppositories, while part of me would like
        to
        > have them as an option when needed, I am also very relieved they
        are not
        > effective and I've only had to do them a couple of times in
        Chance's
        > life. I feel for you mom's that have had to use them regularly
        with
        > your babies!!
        >
        > Thanks again for sharing...it really means alot to me.
        >
        > -- BIG hugs --
        > Kass

      • Kass
        I totally understand Denise!! As you can see, I am delayed too....LOL. Sorry I had not had a chance to respond to your help...I truly do appreciate you
        Message 3 of 18 , Aug 12, 2006
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          I totally understand Denise!!  As you can see, I am delayed too....LOL.  Sorry I had not had a chance to respond to your help...I truly do appreciate you sharing with me.

          Thanks for the additional information on Miranda's regime and how the Zelnorm seems to be helping her.  We are still not exactly sure what all the factors are with Chance's constipation.  I am happy to say he typically eats well and we don't appear to have any significant upper GI issues....he has mild reflux but the Prevacid is helping with that.  A gastric emptying scan we did at Mayo did appear to show a problem with motility through the small intestine, and his primary issues appear to be with the ascending colon, so motility problems, but what all is involved is still hard to say.

          We did start the Zelnorm this past Tuesday.  He'd not pooped since Sunday (and had only gone 4 days before that) and I was hoping maybe the introduction of the Zelnorm would get things moving.  Unfortunatly, he continued not going until today :-(  He DID go today though, and he appeared to move alot on through, which MIGHT be Zelnorm related but he's done that before, so I am having a hard time telling.  He went three times today, all three decent sized movements, so I suppose the real test will be to see whether he goes another 4 days without a BM or maybe starts to reduce the time in between with the help of the Zelnorm.

          Am I being overly optimistic to hope maybe the Zelnorm just didn't kick in right away but could still make a real difference??  I know someone told me if there is no change in a week it's not going to help....have you heard this too??

          Also wondering what dose others have their kids on??  Chance is taking 6mg two times a day.  Is there room to go up on the dose maybe??

          Thanks again for sharing with me Denise, I really do appreciate it so much!!!

          -- BIG hugs --
          Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
          Life is not measured by the breaths we take, but by the moments that take our breath away - Unknown

          Steve and Denise wrote:

           
          Hi Kass,         Sorry for the delay in the reply but I am on digest and it takes me a while sometimes to get through everything till I find something addressed to me.        I should say, Miranda's problem is more with the food not moving through her.  She is J tube fed only and if she does try to orally eat anythinng we end up draining it out hours later through her G tube because she is gagging and in pain. So I would say the Zelnorm has more helped with food motility if that makes sense. But she also does take Miralax, Gastrocrom, prevacid, zantac, periactin and Elavil, all for stomach related probelms . So I do know it's the combination of everything that helps her. And I also know she still has signifigant GI issues she suffers with in spite of all the meds. She takes Zofran pretty much daily for nausea and we drain her tummy often. So no, Zelnorm did not 'cure' her, but it does help.      I hope this makes sense and does not discourage you, because like I said, it does make a huge difference for her when she takes it.       Be warned though, its EXPENSIVE!!Denise 

          Re: Zelnorm 

          Posted by: "Kass" kass@swbell. net kasskids 

          Sun Jul 30, 2006 9:39 pm (PST) 

          Thanks for sharing this with me Denise!! Very exciting to hear it's
          helped Miranda so much. I'll take anything that helps, especially with
          no side effects!!

          Wondering... ...is she taking any other motility meds along with it??
          I've got to call tomorrow because it dawned on me this weekend that I am
          not clear whether Chance should continue on the Miralax and Dulcolax
          while we try the Zelnorm or not.

          Thanks SO much for sharing with me. :-)

          -- BIG hugs --
          Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
          Life is not measured by the breaths we take, but by the moments that
          take our breath away - Unknown

          Steve and Denise wrote:

          >
          >

          Hi Kass, Miranda has been on Zelnorm for over 3 years now. It
          helps her tremendously. When we had to with hold it for a week
          before her manometry she was so sick without it. She is 9 1/2 years
          old, weighs 65 lbs and ta! kes 6mg twice a day. I have not seen any
          side effects from it. I hope it brings Chance relief. Denise

          > [Add FUN to your email - CLICK HERE!]


          Add FUN to your email - CLICK HERE!
        • Karen Hunt
          Hi, I tried all the below meds with my son and we ended up back with the simple sugar lactulose. A very small amount every other day works wonders....given
          Message 4 of 18 , Aug 12, 2006
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            Hi,
             
            I tried all the below meds with my son and we ended up back with the
            simple sugar lactulose.  A very small amount every other day works
            wonders....given its supposedly not absorbed by the body, its one less
            drug I'm giving my son but more importantly IT WORKS,
             
            Just figured I'd mention it...for a few years my GI poo poo'd my idea that this
            med worked ....he felt the others were superior.....
             
            Just something you might want to try if you haven't...you have to play around
            with the dose...too much will cause diahrrea....we use honestly about about
            1 tsp every other day and he goes like a charm
            -----Original Message-----
            From: Mito@yahoogroups.com [mailto:Mito@yahoogroups.com]On Behalf Of Kass
            Sent: Saturday, August 12, 2006 2:31 AM
            To: Mito@yahoogroups.com
            Subject: Re: [Mito] Re: Zelnorm

            Dear Rose,

            Please forgive my delay in responding.  Things have been a little crazy over here and I am just getting the chance to play catch up this evening finally!!

            Thanks for continuing to share with me on this topic.  I sure wish Miralax would cause Chance to poop all day!!  We're on a 4-5 day cycle right now on one and one half capfuls of Miralax, 4 Dulcolax a week, AND the Zelnorm we were finally able to start this past Tuesday.  UGH!!  I am continuing to hold out some hope that the Zelnorm might suddenly start making a difference, but it's fading fast as the days go on (he DID go today, 3 times and all three "toilet pluggers" as we like to call the big ones, so maybe, just maybe.....real test will be whether he goes again anytime in the next four days or not).  I will keep this information you shared with me and give it a try to see what happens.

            Thanks again so much for your help.

            -- BIG hugs --
            Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
            Life is not measured by the breaths we take, but by the moments that take our breath away - Unknown

            rosemort2004 wrote:

            The trick with senekot is in the dose, it has to be just right, and
            it will be way more than the recommended dose. It works well
            combined with a stool softener like benefiber/Mucilax/ Metamucil,
            just to keep everything in one soft bulky mass, so that the Senekot
            can push it out in one go (ie 1 lge bm per day). I would not
            personally suggest Miralax, it is inclined to cause pooping all day,
            but I know someone will leap to it's defense LOL.
            Anna was on 5 senekot tabs a day before her appendicostomy (yes,
            that's high!). If you want to try senekot, pick a dose and increase
            it by 1/2 a tab a day till you get the desired result, or to avoid
            getting blocked in the mean time start high and back off by 1/2 a
            tab a day. The first day they don't poop, go up by 1/2 the next day.

            As to fears, well Anna has dyspraxia and I would never have imagined
            she would cath her stoma,(or deal with half the things she has) but
            we got there in small increments and it's great!

            Best wishes. Rose

            --- In Mito@yahoogroups. com, Kass <kass@...> wrote:
            >
            > Thanks for taking the time to respond!!
            >
            > Unfortunatly, because Chance's constipation is in the ascending
            colon
            > (first part), it's too far away from the rectum for enema's to
            have any
            > effect. I've talked with Anne about Asher's cecostomy and it
            seems like
            > there is a chance something like this might be an option at some
            point
            > though. Not only would I love to get Chance off all these meds,
            he is
            > SO ready for that to be the case. It's shocking for me to say
            this,
            > knowing Chance's fears, but I really think he'd jump at the chance
            to do
            > something like this if given the option. I know we need to try
            all med
            > possibilities before though, just so we know we've tried it all
            and this
            > was the only other choice.
            >
            > I know we've tried Senekot in the past, but need to go back and
            look at
            > what the whole regime at the time was...not sure if he was on the
            > Miralax then or not. Hopefully the new GI will have some further
            ideas
            > too.
            >
            > As for the enema's and suppositories, while part of me would like
            to
            > have them as an option when needed, I am also very relieved they
            are not
            > effective and I've only had to do them a couple of times in
            Chance's
            > life. I feel for you mom's that have had to use them regularly
            with
            > your babies!!
            >
            > Thanks again for sharing...it really means alot to me.
            >
            > -- BIG hugs --
            > Kass

          • Kass
            Thanks for sharing Karen!! Anything that works is awesome, even better when it s not a drug!! At some point in this whole process with Chance we tried the
            Message 5 of 18 , Aug 12, 2006
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              Thanks for sharing Karen!!

              Anything that works is awesome, even better when it's not a drug!!  At some point in this whole process with Chance we tried the Lactulose and atleast at that time, it did not work after a month or so.  He seems to respond initially to almost everything (except of course the Zelnorm!!) but within a month or two, we lose ground quickly.  I remember playing with the dose some, just never managed to get back to where we were initially with it.  May well be worth another try though, so I appreciate you sharing your success with it.  Thank goodness you didn't let the GI poo pooing it stop you from trying it over there!!

              -- BIG hugs --
              Kass, proud mom to Chance (13-Mito), Madison (9-Mito), Abigail (8-Mito)
              Life is not measured by the breaths we take, but by the moments that take our breath away - Unknown

              Karen Hunt wrote:

              Hi,I tried all the below meds with my son and we ended up back with thesimple sugar lactulose.  A very small amount every other day workswonders....given its supposedly not absorbed by the body, its one lessdrug I'm giving my son but more importantly IT WORKS,Just figured I'd mention it...for a few years my GI poo poo'd my idea that thismed worked ....he felt the others were superior.... .Just something you might want to try if you haven't...you have to play aroundwith the dose...too much will cause diahrrea.... we use honestly about about1 tsp every other day and he goes like a charm
            • Kelly-Ann
              One thing about lactulose is that fluid intake should be GREAT. That s part that helps it work the best, from our experience, the lactulose doesn t work as
              Message 6 of 18 , Aug 12, 2006
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                One "thing" about lactulose is that fluid intake should be GREAT.
                That's part that helps it work the best, from our experience, the
                lactulose doesn't work as well if hydration isn't available.
                Kelly-Ann
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