Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Kass, I need some more advice. Abby is doing well on this and I'm hopeful but hesitate to get excited about anything if you know what I mean. She is taking a 6 mg tablet in the morning. I thought this would be enough but today she had a hard time going................I've cut her miralax down by half also. Have you seen any problems giving a 6 mg tablet twice daily? Thanks, Kathy Re: Zelnorm !! We're seeing some of this too Kathy......though we have been on it long enough it sure seems like we shouldn't be!! Chance had a major accident Saturday night and Abby had two small ones last week. If we see anymore at all I am calling the GI to see what we need to do. While we are home alot because we homeschool, I am not ready to go back to having to carry spare clothes with me everywhere we go again. Besides, it's one thing to clean up a urine accident (what we used to deal with all the time with Chance)....it's a whole OTHER thing to clean up a poop accident. Anyway, I ramble. Chance is on the Miralax too, but my Abby is not. I do back Chance off the miralax some when he's having good "poop" days.....since thats your goal with all of this anyway, I'd definetly try that with your Abby!! -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: Abby has been on Zelnorm for 3 days. Day one and two I gave her a half tablet( 3mg), today a full tablet. Tonight her pants were full of diarrhea !She has not done anything like this since she was little. I haven't stopped the miralaxyet..............maybe she is getting too much?Any help and advice?Thanks,Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Just jumping in, what about doing a 3 mg dose twice a day? Perhaps the issue isn't as much the amount of zelnorm but that the body would benefit from having it spaced out during the day?? I don't know--I'd ask a pharmacist or a doc because I'm sure there is prescribing do's and don'ts information out there. I'm just tossing it out as an idea. Let's hope Kass can respond soon and give you some input! W > > Kass, > I need some more advice. Abby is doing well on this and I'm hopeful but hesitate to get excited > about anything if you know what I mean. > She is taking a 6 mg tablet in the morning. I thought this would be enough but today she had a hard > time going................I've cut her miralax down by half also. Have you seen any problems giving a 6 mg > tablet twice daily? > Thanks, > Kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Hey Kathy :-) I SOOOO know what you mean!! Chance did great on the new plan for the first ten days and has fallen apart the last ten....it's like clockwork with this kid I swear!! We see an initial response and then we lose it. I called GI today to see where we go from here. Ultimately he's taking 20 more mg's of laxative a week than he was before the way this is going!! ARGH!! We have not seen any problems with the 6mg 2x/day...well other than our little accident Saturday night but he's been on the Zelnorm for months now, so not sure it was related. Maybe try 3mg at night and see if that makes a difference?? Exciting that you've been able to cut the Miralax by half!! Your on your way!! Please send some prayers our way if you have them to spare. I am feeling defeated that things are falling apart so fast with Chance right now. -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: Kass,I need some more advice. Abby is doing well on this and I'm hopeful but hesitate to get excitedabout anything if you know what I mean.She is taking a 6 mg tablet in the morning. I thought this would be enough but today she had a hardtime going................I've cut her miralax down by half also. Have you seen any problems giving a 6 mgtablet twice daily?Thanks,Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Another excellent option if you ask me!! :-) -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown merrywbee wrote: Just jumping in, what about doing a 3 mg dose twice a day? Perhaps the issue isn't as much the amount of zelnorm but that the body would benefit from having it spaced out during the day?? I don't know--I'd ask a pharmacist or a doc because I'm sure there is prescribing do's and don'ts information out there. I'm just tossing it out as an idea. Let's hope Kass can respond soon and give you some input! W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I know, it's always good in the beginning when you try something new. That has happened with us many times. LDN, Chelation, etc. etc. I am going to give her the second dose tonight. She had such a hard time going yesterday there was a little blood in her stool. Do you mind me asking about "Mito" what are the characteristics? We are going to be evaluated in Jan. by Dr. Natowich in Cleveland. My prayers are with you................ Kathy <>< Re: Zelnorm !! Hey Kathy :-) I SOOOO know what you mean!! Chance did great on the new plan for the first ten days and has fallen apart the last ten....it's like clockwork with this kid I swear!! We see an initial response and then we lose it. I called GI today to see where we go from here. Ultimately he's taking 20 more mg's of laxative a week than he was before the way this is going!! ARGH!! We have not seen any problems with the 6mg 2x/day...well other than our little accident Saturday night but he's been on the Zelnorm for months now, so not sure it was related. Maybe try 3mg at night and see if that makes a difference?? Exciting that you've been able to cut the Miralax by half!! Your on your way!! Please send some prayers our way if you have them to spare. I am feeling defeated that things are falling apart so fast with Chance right now. -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: Kass,I need some more advice. Abby is doing well on this and I'm hopeful but hesitate to get excitedabout anything if you know what I mean.She is taking a 6 mg tablet in the morning. I thought this would be enough but today she had a hardtime going................I've cut her miralax down by half also. Have you seen any problems giving a 6 mgtablet twice daily?Thanks,Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hi again Kathy :-) I hope the second dose makes a difference!! I don't know a lot about this drug, but our GI does have us giving 2 doses a day, so perhaps it's needed. Question for you is going to be what dose you can get away with. Did you ever say what weight your Abby is?? Our GI based their dose on weight is why I was asking. Honestly, Mito can present in so so many different ways. Some of the keys to thinking it's possibly the diagnosis would be more than one body system involved (particularly ones not usually involved together), unusual presentations, and a progressive nature to whatever systems are involved. If you go to the link below in my signature, there is a list of all the different issues my guys have going on. We appear to encompass a lot of the different systems usually involved. If you have any specific questions, I'd be happy to try and help. My oldest 2 were diagnosed in 2001 by Dr. Cohen at Cleveland Clinic......Dr. N works closely with Dr. Cohen who is one of the very few real experts in the field of mitochondrial disease, so you should be in good hands there. My youngest was diagnosed in 2003 when we were seeing one of the other experts at the Mayo Clinic (he's no longer there). So I have had a few years now to try and understand this disease process.......what little can really be understood!! It's complicated and difficult for doctors to get a handle on because it can present so differently even within the same family. I hope your appointment in January is a good one. Thanks for the prayers and I will be keeping you in ours as you attempt the Miralax wean. -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: I know, it's always good in the beginning when you try something new. That has happened with us many times.LDN, Chelation, etc. etc.I am going to give her the second dose tonight. She had such a hard time going yesterday there was a littleblood in her stool.Do you mind me asking about "Mito" what are the characteristics? We are going to be evaluated in Jan. byDr. Natowich in Cleveland.My prayers are with you................Kathy<>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 Zelnorm update: Well, she's been on it for over a week now, is up to the full dose of 2 tablets a day and now she is constipated again ! Has not been very much at all in about 3 days......................... nothing works for this kids but the dreaded Miralax. I'm going to keep giving it to her and see if it will kick in and work ! Kathy Re: Zelnorm !! Hi Kathy! Only parents like us could "appreciate" diarrhea! I would definitely call the doc and ask them if you should lower the dose or keep it at the full tablet. It may be that she would do better on a half tablet, if the full tablet is giving her diarrhea. It may also be that this is a sign that you could lower the dose of miralax and see if the diarrhea subsides.Please keep posting updates--I'd like to know how she does on it!W>> Abby has been on Zelnorm for 3 days. Day one and two I gave her a half tablet> ( 3mg), today a full tablet. Tonight her pants were full of diarrhea !> She has not done anything like this since she was little. I haven't stopped the miralax> yet..............maybe she is getting too much?> Any help and advice?> Thanks,> Kathy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2006 Report Share Posted October 30, 2006 Hi Kathy-- I wonder if one of the things the miralax does for her is bulking up her stool as well as holding in the moisture. If she is on a reduced miralax dose while you are doing this, try getting one source of fiber supplementation into her while doing this, i.e. benefiber or fiber choice or some other type of additional fiber to add some bulk in there to make up for the decreased miralax. Start in really small amounts. W > > Zelnorm update: > Well, she's been on it for over a week now, is up to the full dose of 2 tablets a day and now she > is constipated again ! Has not been very much at all in about 3 days......................... > nothing works for this kids but the dreaded Miralax. > I'm going to keep giving it to her and see if it will kick in and work ! > Kathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 I agree. She has to have it very soft to be able to go. It's a little more firmed up with the zelnorm and decreased miralax. I'll add the fiber. Do you think I need to keep her on the zelnorm? Re: Zelnorm !! Hi Kathy-- I wonder if one of the things the miralax does for her is bulking up her stool as well as holding in the moisture. If she is on a reduced miralax dose while you are doing this, try getting one source of fiber supplementation into her while doing this, i.e. benefiber or fiber choice or some other type of additional fiber to add some bulk in there to make up for the decreased miralax. Start in really small amounts. W>> Zelnorm update:> Well, she's been on it for over a week now, is up to the full dose of 2 tablets a day and now she> is constipated again ! Has not been very much at all in about 3 days.........................> nothing works for this kids but the dreaded Miralax.> I'm going to keep giving it to her and see if it will kick in and work !> Kathy> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 I would give it longer to see if it does work. It could be that her body is adjusting to it, and maybe in time it will be more regular with the zelnorm, without the bloating that she gets with the miralax. > > I agree. She has to have it very soft to be able to go. It's a little more firmed up with the zelnorm and > decreased miralax. I'll add the fiber. Do you think I need to keep her on the zelnorm? > > Quote Link to comment Share on other sites More sharing options...
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