Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Last week I had this thought " why is my daughter on pedisure " ? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: g-tube feeding Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: g-tube feeding Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: g-tube feeding Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 I am afraid I don't have specifics to share, though have heard from others with children with g-tubes about them feeding a "blenderized diet". Might be something you could do a search on and get some additional information. Should be able to get some information from those on the g-tube list also. Take care! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Sorensen wrote: Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 I am afraid I don't have specifics to share, though have heard from others with children with g-tubes about them feeding a "blenderized diet". Might be something you could do a search on and get some additional information. Should be able to get some information from those on the g-tube list also. Take care! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Sorensen wrote: Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 I am afraid I don't have specifics to share, though have heard from others with children with g-tubes about them feeding a "blenderized diet". Might be something you could do a search on and get some additional information. Should be able to get some information from those on the g-tube list also. Take care! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Sorensen wrote: Good question Heidi. As you said it is a little more work, but couldn't you puree these items for her so they could go in her tube (?). A good question to ask a dietician. Would organic, fresh fruits and vegies be a little more beneficial than just pedisure. I am curious myself and would like to know. Nerenhausen mom to Leah and Heidi Payton wrote: Last week I had this thought "why is my daughter on pedisure"? Why not fresh fruit and vegetables, meat and bread? Can't she benifit more from the earth than a factory produced product? I know that there is alot more work involved but I wouldn't mind if it benefit her. I have joined a g-tube support group as well, but my question was does anyone with a child with mito do this? Have you seen benefits? Any suggestions would help. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our precious angel. Logan (18 months) healthy, little bully and biggest flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Heidi, Yes, I feed my daughter a blended vegan diet and she is 100% gtube fed. She was on Pediasure for 3 yrs and was gaining too much weight on a restricted calorie diet. She has been on the whole food diet just over a year and I have seen improvement in her BM's, her energy levels and is more alert and interactive. Her gross motor control has also significantly improved (for her). I use a Vitamix blender, which is a 2hp blender and will liquify a tree stump! You can check them out at www.vitamix.com They are very expensive, but they will give a huge discount with a letter from your dr stating that your child is tube fed. I was also able to get Children's Special Health Care Services to pay for the vitamix. CSHCS is a state program that picks up what her ins. does not (it is run thru our local county health dept). The $ came from a special fund. If you have any other ?'s, please feel free to ask, whole food diets and nutrition has been something I have been reading about for a couple of years now. I would be happy to be of any help I can. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Heidi, Yes, I feed my daughter a blended vegan diet and she is 100% gtube fed. She was on Pediasure for 3 yrs and was gaining too much weight on a restricted calorie diet. She has been on the whole food diet just over a year and I have seen improvement in her BM's, her energy levels and is more alert and interactive. Her gross motor control has also significantly improved (for her). I use a Vitamix blender, which is a 2hp blender and will liquify a tree stump! You can check them out at www.vitamix.com They are very expensive, but they will give a huge discount with a letter from your dr stating that your child is tube fed. I was also able to get Children's Special Health Care Services to pay for the vitamix. CSHCS is a state program that picks up what her ins. does not (it is run thru our local county health dept). The $ came from a special fund. If you have any other ?'s, please feel free to ask, whole food diets and nutrition has been something I have been reading about for a couple of years now. I would be happy to be of any help I can. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Heidi, Yes, I feed my daughter a blended vegan diet and she is 100% gtube fed. She was on Pediasure for 3 yrs and was gaining too much weight on a restricted calorie diet. She has been on the whole food diet just over a year and I have seen improvement in her BM's, her energy levels and is more alert and interactive. Her gross motor control has also significantly improved (for her). I use a Vitamix blender, which is a 2hp blender and will liquify a tree stump! You can check them out at www.vitamix.com They are very expensive, but they will give a huge discount with a letter from your dr stating that your child is tube fed. I was also able to get Children's Special Health Care Services to pay for the vitamix. CSHCS is a state program that picks up what her ins. does not (it is run thru our local county health dept). The $ came from a special fund. If you have any other ?'s, please feel free to ask, whole food diets and nutrition has been something I have been reading about for a couple of years now. I would be happy to be of any help I can. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 e, If you don't mind me asking, what exactly are you giving her. I have tried a couple of things so far, just starting slow making sure she doesn't have a allergy to something. She has had bananas and I have given her some V8 until I can make it homemade for her this weekend. Just those 2 things have helped her BM problem it was the first time in her life it was normal. I have a book on the super baby food (she is 2) but would like to read more about nutrition itself, do you have a book that you would recommend? I was looking for a book that broke down all nutrients and minerals for each food? Any help would be great. Thank you Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 e, If you don't mind me asking, what exactly are you giving her. I have tried a couple of things so far, just starting slow making sure she doesn't have a allergy to something. She has had bananas and I have given her some V8 until I can make it homemade for her this weekend. Just those 2 things have helped her BM problem it was the first time in her life it was normal. I have a book on the super baby food (she is 2) but would like to read more about nutrition itself, do you have a book that you would recommend? I was looking for a book that broke down all nutrients and minerals for each food? Any help would be great. Thank you Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 e, If you don't mind me asking, what exactly are you giving her. I have tried a couple of things so far, just starting slow making sure she doesn't have a allergy to something. She has had bananas and I have given her some V8 until I can make it homemade for her this weekend. Just those 2 things have helped her BM problem it was the first time in her life it was normal. I have a book on the super baby food (she is 2) but would like to read more about nutrition itself, do you have a book that you would recommend? I was looking for a book that broke down all nutrients and minerals for each food? Any help would be great. Thank you Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Heidi, Chelsea gets a whole food vegan diet. I feed her tofu, tempeh, whole grains (like brown rice, oatmeal, quinoa, amaranth, buchwheat groats, rye, etc.), dried beans and legumes (like lentils, split peas, black eyed peas, navy beans, pinto beans, kidney beans, etc), raw nuts, raw seeds, ground flax seed, olive oil, wheat germ, and lots of fresh vegetables. She also gets 9-12oz/day of veggie juice that I make. I have cut most fruit out of her diet as I have a sneaking suspicion it was making her body acidic and lowering her seizure threshhold. I do give her whole papaya and prune juice. Some good books on the subject of whole food diets are: Nutrition Almanac, 5th ed. by Lavon J. Dunne this has claorie/nutirent content for most of what I feed her, except the info on the beans and legumes is for cooked. Prescription for Dietary Wellness: Using Foods to Heal By Phyllis A. Balch & F. Balch this is an excellent resource, I highly reccomend it. The authors go thru what foods are good for what ailment, good fats v bad fats, and also how to plan a well rounded diet. Juicing For Life by Cherie Calbom & Maureen Keane this is a good book if you are interested in the benefits of raw juices I had many concerns about her being on a formula diet, mostly that the ingredients are not 'natural' and Pediasure is high in sugar. She was also getting fat, she had developed quite a spare tire around her middle and her ped and I were becoming concerned about the impact on her heart and lungs. Her weight gain has definatly slowed. It has been just over a year since she has been fed this diet and the spare tire is nearly gone. She also has had significant improvement in the bm area. Pedaisure turned into a rock in her intestines and she was always mildy constipated. I started giving her apple and V8 juice, but it only helped a little. I noticed once she was on the vegan diet, she did not appear as bloated, I think the Pedaisure caused lots of gas. The food I make is quite thick, but I use the fatter bolus extension without the med port and I pump it in her over 15 to 30 mins.(she has a Mic-Key) She has always tolerated bolus very well. Hope this is helpful. Let me know if there is anything else you would like to know=) Krisitne, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Heidi, Chelsea gets a whole food vegan diet. I feed her tofu, tempeh, whole grains (like brown rice, oatmeal, quinoa, amaranth, buchwheat groats, rye, etc.), dried beans and legumes (like lentils, split peas, black eyed peas, navy beans, pinto beans, kidney beans, etc), raw nuts, raw seeds, ground flax seed, olive oil, wheat germ, and lots of fresh vegetables. She also gets 9-12oz/day of veggie juice that I make. I have cut most fruit out of her diet as I have a sneaking suspicion it was making her body acidic and lowering her seizure threshhold. I do give her whole papaya and prune juice. Some good books on the subject of whole food diets are: Nutrition Almanac, 5th ed. by Lavon J. Dunne this has claorie/nutirent content for most of what I feed her, except the info on the beans and legumes is for cooked. Prescription for Dietary Wellness: Using Foods to Heal By Phyllis A. Balch & F. Balch this is an excellent resource, I highly reccomend it. The authors go thru what foods are good for what ailment, good fats v bad fats, and also how to plan a well rounded diet. Juicing For Life by Cherie Calbom & Maureen Keane this is a good book if you are interested in the benefits of raw juices I had many concerns about her being on a formula diet, mostly that the ingredients are not 'natural' and Pediasure is high in sugar. She was also getting fat, she had developed quite a spare tire around her middle and her ped and I were becoming concerned about the impact on her heart and lungs. Her weight gain has definatly slowed. It has been just over a year since she has been fed this diet and the spare tire is nearly gone. She also has had significant improvement in the bm area. Pedaisure turned into a rock in her intestines and she was always mildy constipated. I started giving her apple and V8 juice, but it only helped a little. I noticed once she was on the vegan diet, she did not appear as bloated, I think the Pedaisure caused lots of gas. The food I make is quite thick, but I use the fatter bolus extension without the med port and I pump it in her over 15 to 30 mins.(she has a Mic-Key) She has always tolerated bolus very well. Hope this is helpful. Let me know if there is anything else you would like to know=) Krisitne, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Heidi, Chelsea gets a whole food vegan diet. I feed her tofu, tempeh, whole grains (like brown rice, oatmeal, quinoa, amaranth, buchwheat groats, rye, etc.), dried beans and legumes (like lentils, split peas, black eyed peas, navy beans, pinto beans, kidney beans, etc), raw nuts, raw seeds, ground flax seed, olive oil, wheat germ, and lots of fresh vegetables. She also gets 9-12oz/day of veggie juice that I make. I have cut most fruit out of her diet as I have a sneaking suspicion it was making her body acidic and lowering her seizure threshhold. I do give her whole papaya and prune juice. Some good books on the subject of whole food diets are: Nutrition Almanac, 5th ed. by Lavon J. Dunne this has claorie/nutirent content for most of what I feed her, except the info on the beans and legumes is for cooked. Prescription for Dietary Wellness: Using Foods to Heal By Phyllis A. Balch & F. Balch this is an excellent resource, I highly reccomend it. The authors go thru what foods are good for what ailment, good fats v bad fats, and also how to plan a well rounded diet. Juicing For Life by Cherie Calbom & Maureen Keane this is a good book if you are interested in the benefits of raw juices I had many concerns about her being on a formula diet, mostly that the ingredients are not 'natural' and Pediasure is high in sugar. She was also getting fat, she had developed quite a spare tire around her middle and her ped and I were becoming concerned about the impact on her heart and lungs. Her weight gain has definatly slowed. It has been just over a year since she has been fed this diet and the spare tire is nearly gone. She also has had significant improvement in the bm area. Pedaisure turned into a rock in her intestines and she was always mildy constipated. I started giving her apple and V8 juice, but it only helped a little. I noticed once she was on the vegan diet, she did not appear as bloated, I think the Pedaisure caused lots of gas. The food I make is quite thick, but I use the fatter bolus extension without the med port and I pump it in her over 15 to 30 mins.(she has a Mic-Key) She has always tolerated bolus very well. Hope this is helpful. Let me know if there is anything else you would like to know=) Krisitne, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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