Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, The prescribed lactulose dose is 15-20ml three times a day. However, I only use that when he is severely constipated. I find 15ml in the a.m. is usually enough for a maintenance dose but sometimes he needs more. The nurse at the peds office said they trust me and so I should just "play around with it" to find what works for him. Frustrating but true, you never know with Cameron. I know your frustration. I was there a year ago with Cameron. He finally started a mito cocktail (COQ10 and Riboflavin) then and has greatly improved energy wise. He had his tube placed on his three month birthday and it is truly a Godsend, he would not be with us without it. I really hope you get some answers and Abby does well. Thanks for reminding me about the flax seed oil. I will ask Cam's doctor on Thurs. If it is a good idea. He may not know either. -----Original Message----- Sent: Monday, January 13, 2003 4:06 PMTo: Mito Subject: Re: flax oile:I am so unfamiliar with this whole mito thing that I am almost leary to give Abby anything. We have been through a whirlwind of crap lately (pardon me) with a trip to the Mayo (18 hour drive) over Christmas and a fight for the government to pay our $22,000 bill from there and now into the hospital because Abby is not eating. So I have not yet tried the flaxseed oil but I would like to when I get Abby home. I think that she might be getting a g-tube before we leave so I would probably put the flaxseed oil through that. I would guess that oil is oil as far as aspirating is concerned but am not too sure. How much lactulose do you give Cameron?e, mom to Abby 10 mos.> e,> Cameron is in Lactulose too. It is helping but he is still vomiting. I> am wondering if you tried the flaxseed oil. I have not yet, but I too> would rather use something natural. Cameron's doctor was concerned> about mineral oil use and aspiration so I do not know if any oil like> flaxseed would not be a good idea in my son's case.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, The prescribed lactulose dose is 15-20ml three times a day. However, I only use that when he is severely constipated. I find 15ml in the a.m. is usually enough for a maintenance dose but sometimes he needs more. The nurse at the peds office said they trust me and so I should just "play around with it" to find what works for him. Frustrating but true, you never know with Cameron. I know your frustration. I was there a year ago with Cameron. He finally started a mito cocktail (COQ10 and Riboflavin) then and has greatly improved energy wise. He had his tube placed on his three month birthday and it is truly a Godsend, he would not be with us without it. I really hope you get some answers and Abby does well. Thanks for reminding me about the flax seed oil. I will ask Cam's doctor on Thurs. If it is a good idea. He may not know either. -----Original Message----- Sent: Monday, January 13, 2003 4:06 PMTo: Mito Subject: Re: flax oile:I am so unfamiliar with this whole mito thing that I am almost leary to give Abby anything. We have been through a whirlwind of crap lately (pardon me) with a trip to the Mayo (18 hour drive) over Christmas and a fight for the government to pay our $22,000 bill from there and now into the hospital because Abby is not eating. So I have not yet tried the flaxseed oil but I would like to when I get Abby home. I think that she might be getting a g-tube before we leave so I would probably put the flaxseed oil through that. I would guess that oil is oil as far as aspirating is concerned but am not too sure. How much lactulose do you give Cameron?e, mom to Abby 10 mos.> e,> Cameron is in Lactulose too. It is helping but he is still vomiting. I> am wondering if you tried the flaxseed oil. I have not yet, but I too> would rather use something natural. Cameron's doctor was concerned> about mineral oil use and aspiration so I do not know if any oil like> flaxseed would not be a good idea in my son's case.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 e, The prescribed lactulose dose is 15-20ml three times a day. However, I only use that when he is severely constipated. I find 15ml in the a.m. is usually enough for a maintenance dose but sometimes he needs more. The nurse at the peds office said they trust me and so I should just "play around with it" to find what works for him. Frustrating but true, you never know with Cameron. I know your frustration. I was there a year ago with Cameron. He finally started a mito cocktail (COQ10 and Riboflavin) then and has greatly improved energy wise. He had his tube placed on his three month birthday and it is truly a Godsend, he would not be with us without it. I really hope you get some answers and Abby does well. Thanks for reminding me about the flax seed oil. I will ask Cam's doctor on Thurs. If it is a good idea. He may not know either. -----Original Message----- Sent: Monday, January 13, 2003 4:06 PMTo: Mito Subject: Re: flax oile:I am so unfamiliar with this whole mito thing that I am almost leary to give Abby anything. We have been through a whirlwind of crap lately (pardon me) with a trip to the Mayo (18 hour drive) over Christmas and a fight for the government to pay our $22,000 bill from there and now into the hospital because Abby is not eating. So I have not yet tried the flaxseed oil but I would like to when I get Abby home. I think that she might be getting a g-tube before we leave so I would probably put the flaxseed oil through that. I would guess that oil is oil as far as aspirating is concerned but am not too sure. How much lactulose do you give Cameron?e, mom to Abby 10 mos.> e,> Cameron is in Lactulose too. It is helping but he is still vomiting. I> am wondering if you tried the flaxseed oil. I have not yet, but I too> would rather use something natural. Cameron's doctor was concerned> about mineral oil use and aspiration so I do not know if any oil like> flaxseed would not be a good idea in my son's case.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 : How old is Cameron, how much does he weigh? Abby is 10mos and weighs between 16-17 lbs. She only takes 5 ml in the am and 5 ml in the pm. That makes her runny enough! She only eats formula though. e, mom to Abby 10 mos. > e, > The prescribed lactulose dose is 15-20ml three times a day. However, I > only use that when he is severely constipated. I find 15ml in the a.m. > is usually enough for a maintenance dose but sometimes he needs more. > The nurse at the peds office said they trust me and so I should just > " play around with it " to find what works for him. Frustrating but true, > you never know with Cameron. > I know your frustration. I was there a year ago with Cameron. He > finally started a mito cocktail (COQ10 and Riboflavin) then and has > greatly improved energy wise. He had his tube placed on his three month > birthday and it is truly a Godsend, he would not be with us without it. > I really hope you get some answers and Abby does well. Thanks for > reminding me about the flax seed oil. I will ask Cam's doctor on Thurs. > If it is a good idea. He may not know either. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 Are you still at Mayo? We were just there this past week. Too bad If so, we could have met! Hope all goes well with your daughter and she gets the G-tube to help with eating. It can be so frustrating when they refuse to eat anything! Darla: mom to Asenath, 2, migraines, seizures, stroke, SLE's, bi-hemi, Carnitine deficiency, high metabolic acidosis, ketosis issue, low bicarbonate, & resting tachycardia...unknown Mito plus the wonderful 7 others Re: flax oile :I am so unfamiliar with this whole mito thing that I am almost leary to give Abby anything. We have been through a whirlwind of crap lately (pardon me) with a trip to the Mayo (18 hour drive) over Christmas and a fight for the government to pay our $22,000 bill from there and now into the hospital because Abby is not eating. So I have not yet tried the flaxseed oil but I would like to when I get Abby home. I think that she might be getting a g-tube before we leave so I would probably put the flaxseed oil through that. I would guess that oil is oil as far as aspirating is concerned but am not too sure. How much lactulose do you give Cameron?e, mom to Abby 10 mos.> e,> Cameron is in Lactulose too. It is helping but he is still vomiting. I> am wondering if you tried the flaxseed oil. I have not yet, but I too> would rather use something natural. Cameron's doctor was concerned> about mineral oil use and aspiration so I do not know if any oil like> flaxseed would not be a good idea in my son's case.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 Are you still at Mayo? We were just there this past week. Too bad If so, we could have met! Hope all goes well with your daughter and she gets the G-tube to help with eating. It can be so frustrating when they refuse to eat anything! Darla: mom to Asenath, 2, migraines, seizures, stroke, SLE's, bi-hemi, Carnitine deficiency, high metabolic acidosis, ketosis issue, low bicarbonate, & resting tachycardia...unknown Mito plus the wonderful 7 others Re: flax oile :I am so unfamiliar with this whole mito thing that I am almost leary to give Abby anything. We have been through a whirlwind of crap lately (pardon me) with a trip to the Mayo (18 hour drive) over Christmas and a fight for the government to pay our $22,000 bill from there and now into the hospital because Abby is not eating. So I have not yet tried the flaxseed oil but I would like to when I get Abby home. I think that she might be getting a g-tube before we leave so I would probably put the flaxseed oil through that. I would guess that oil is oil as far as aspirating is concerned but am not too sure. How much lactulose do you give Cameron?e, mom to Abby 10 mos.> e,> Cameron is in Lactulose too. It is helping but he is still vomiting. I> am wondering if you tried the flaxseed oil. I have not yet, but I too> would rather use something natural. Cameron's doctor was concerned> about mineral oil use and aspiration so I do not know if any oil like> flaxseed would not be a good idea in my son's case.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 e, Cameron is 23 mo. He weighs about 26lb. Cameron is g-tube fed and therefore only "eats" formula too. A specialized amino acid, hypoallergenic, broken down, special medical food called E028. It come in juice packs and looks like a pineapple/orange smoothie. Not my idea of food, but hey whatever works. -----Original Message----- Sent: Monday, January 13, 2003 8:29 PMTo: Mito Subject: Re: flax oile:How old is Cameron, how much does he weigh? Abby is 10mos and weighs between 16-17 lbs. She only takes 5 ml in the am and 5 ml in the pm. That makes her runny enough! She only eats formula though.e, mom to Abby 10 mos.> e,> The prescribed lactulose dose is 15-20ml three times a day. However, I> only use that when he is severely constipated. I find 15ml in the a.m.> is usually enough for a maintenance dose but sometimes he needs more.> The nurse at the peds office said they trust me and so I should just> "play around with it" to find what works for him. Frustrating but true,> you never know with Cameron. > I know your frustration. I was there a year ago with Cameron. He> finally started a mito cocktail (COQ10 and Riboflavin) then and has> greatly improved energy wise. He had his tube placed on his three month> birthday and it is truly a Godsend, he would not be with us without it.> I really hope you get some answers and Abby does well. Thanks for> reminding me about the flax seed oil. I will ask Cam's doctor on Thurs.> If it is a good idea. He may not know either.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 e, Cameron is 23 mo. He weighs about 26lb. Cameron is g-tube fed and therefore only "eats" formula too. A specialized amino acid, hypoallergenic, broken down, special medical food called E028. It come in juice packs and looks like a pineapple/orange smoothie. Not my idea of food, but hey whatever works. -----Original Message----- Sent: Monday, January 13, 2003 8:29 PMTo: Mito Subject: Re: flax oile:How old is Cameron, how much does he weigh? Abby is 10mos and weighs between 16-17 lbs. She only takes 5 ml in the am and 5 ml in the pm. That makes her runny enough! She only eats formula though.e, mom to Abby 10 mos.> e,> The prescribed lactulose dose is 15-20ml three times a day. However, I> only use that when he is severely constipated. I find 15ml in the a.m.> is usually enough for a maintenance dose but sometimes he needs more.> The nurse at the peds office said they trust me and so I should just> "play around with it" to find what works for him. Frustrating but true,> you never know with Cameron. > I know your frustration. I was there a year ago with Cameron. He> finally started a mito cocktail (COQ10 and Riboflavin) then and has> greatly improved energy wise. He had his tube placed on his three month> birthday and it is truly a Godsend, he would not be with us without it.> I really hope you get some answers and Abby does well. Thanks for> reminding me about the flax seed oil. I will ask Cam's doctor on Thurs.> If it is a good idea. He may not know either.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 e, Cameron is 23 mo. He weighs about 26lb. Cameron is g-tube fed and therefore only "eats" formula too. A specialized amino acid, hypoallergenic, broken down, special medical food called E028. It come in juice packs and looks like a pineapple/orange smoothie. Not my idea of food, but hey whatever works. -----Original Message----- Sent: Monday, January 13, 2003 8:29 PMTo: Mito Subject: Re: flax oile:How old is Cameron, how much does he weigh? Abby is 10mos and weighs between 16-17 lbs. She only takes 5 ml in the am and 5 ml in the pm. That makes her runny enough! She only eats formula though.e, mom to Abby 10 mos.> e,> The prescribed lactulose dose is 15-20ml three times a day. However, I> only use that when he is severely constipated. I find 15ml in the a.m.> is usually enough for a maintenance dose but sometimes he needs more.> The nurse at the peds office said they trust me and so I should just> "play around with it" to find what works for him. Frustrating but true,> you never know with Cameron. > I know your frustration. I was there a year ago with Cameron. He> finally started a mito cocktail (COQ10 and Riboflavin) then and has> greatly improved energy wise. He had his tube placed on his three month> birthday and it is truly a Godsend, he would not be with us without it.> I really hope you get some answers and Abby does well. Thanks for> reminding me about the flax seed oil. I will ask Cam's doctor on Thurs.> If it is a good idea. He may not know either.> > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 No, we are at home now. Abby may get her tube placed tomorrow if the surgeon has a cancellation. e, mom to Abby 10 mos. > Are you still at Mayo? We were just there this past week. Too bad If so, we could have met! Hope all goes well with your daughter and she gets the G-tube to help with eating. It can be so frustrating when they refuse to eat anything! > > Darla: mom to Asenath, 2, migraines, seizures, stroke, SLE's, bi- hemi, Carnitine deficiency, high metabolic acidosis, ketosis issue, low bicarbonate, & resting tachycardia...unknown Mito > plus the wonderful 7 others Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 No, we are at home now. Abby may get her tube placed tomorrow if the surgeon has a cancellation. e, mom to Abby 10 mos. > Are you still at Mayo? We were just there this past week. Too bad If so, we could have met! Hope all goes well with your daughter and she gets the G-tube to help with eating. It can be so frustrating when they refuse to eat anything! > > Darla: mom to Asenath, 2, migraines, seizures, stroke, SLE's, bi- hemi, Carnitine deficiency, high metabolic acidosis, ketosis issue, low bicarbonate, & resting tachycardia...unknown Mito > plus the wonderful 7 others Quote Link to comment Share on other sites More sharing options...
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