Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 ---Hi , I hope you don't mind me butting in, but have you looked at oralflo.com to help your son swallowing pills? It is a sippy cup, but with a longer spout, in which you place the pill to be swallowed. When a regular drink is taken, the pill is swallowed with it. Hope this is useful. Regards Glynis mam to Jasmine 7 yrs Diagnosed with Kabuki Syndrome NG tube fed In pecanbread , Rob or Sunseri wrote: > > We tried that. The problem is that he doesn't really have an aversion to swallowing pills, it's that he likes/loves to chew: fish oil caps, candex, s. boulardii and a few mineral caps. So then when you try to get him to swallow, he immediately chews it and if it tastes horrible he of course spits it out and looks at you like " why did you put that horrible stuff in my yummy capsule? " We can't seem to get past this preference of chewing the caps. Since he's willing to chew some pretty wierd tasting capsules, he continues to think of capsules as chewables. > > - > > robin wrote: > , > What about the Oralflo cup that is used to help those with swallowing disorders or just an aversion to swallwing pills? > Meleah > Re: Re: Article on mitochondrial disease more info on Kiki > > The prescription enzymes must be swallowed. I am wondering how I will get my child to do this if he does have a problem with his pancreas. My 3 YO daughter can swallow, but not my son. Our GI is doing autism research with the doctors at the Thoughtful House, so she knows autism, but shouldn't any decent GI know when to test for PI (you would think!)? > > Also, you said that your daughter has a mito disese, but you don't yet know which one. Which test is definitive for having one and which one tells you the type? > > - > > Bunce wrote: > HI , > > The only way to test for mitochondrial diseases accurately is to do a muscle biopsy, arterial blood draws and spinal tap. It can not be done by just anyone...these tests are so advanced that there are only six in the country that know how to do them accurately. I am sorry...for us mom's this is not cool....but for us we had to finally give in and do it. > > The other tests miss many of these conditions. Many reasons to why...to many to mention here. www.umdf.org<http://www.umdf.org/> can tell you. Call them! > > Dr. Cohen (Cleveland Ohio) and Dr. Shoffner (Atlanta Georgia) are the best. They know to test for all FORTY, plus look into mitochondrial problems that are not classical in origin. You truly do not know if your child doesn't have this if they where not the ones testing. Sadly to say...there have even been children that have to have a second muscle biopsy because home town doctors did not do them right! > > THIS IS WHAT I meant about SCDiet and Pancreatic Insufficiency or PI: > > With PI a child does not digest foods properly. A child can be " allergic " or " intolerant " to lots of things...the gut gets full of bad gut bugs...of every kind and variety...causing ASD symptoms. They can not digest Carbohydrates, FATS and Proteins...the ferment...they putrefy....a mess....LPS causes havoc on the body....a true " vicious cycle " . My daughter once was " allergic " to food. AS you know Foods are made up of Carbohydrates, Fats and proteins. > > a.. SCDIET deals with the carbohydrate problem excellently! It is all monosaccharide...making it easy for a child with PI to be able to handle foods better, because very little needs to be done to the food to absorb it. Although harder to digest SCD foods will remain a problem, even after significant time on " fanatical " SCD. (THIS is a RED FLAG that a child has PI!) > b.. SCD does not help with putrefying proteins and fats that are not digested. It does not restrict them (nor should it, the developing child/human body needs them ). Yet with PI, some of the bad gut bugs that result from putrefying proteins can not be starved out by eating the monosaccharide....they do not thrive on carbohydrates.....they EAT PROTEINS And FATS that are left behind in the gut thanks to PI. Keeping a vicious cycle of another variety alive...causing some of the remaining issues of ASD. Even Elaine knew that some bad gut bugs could not be starved out by SCD alone. > c.. Many of these ASD kids have PI....we just have not had it diagnosed yet. This causes " food jags " ...and pain when a child eats things that they can not digest.......constipation....diarrhea......making some of the strange food jags they kids have. I call it " self preservation " ....eventhough it drives us parents crazy. With proper treatment...a ASD child can learn to be able to trust foods better and can EAT everything on the SCDiet! Takes time...but she is now learning to TRUST food. > So.....SCD is going to help....but not completely when a child has PI. > > ***But just dealing with the carbohydrate gut bugs is MORE THAN HALF THE BATTLE! The results to just ending this...where amazing. Her seizures stopped....and her deliriums stopped.....so much more. Mimi, is finding out that this is related to LPS. You see...when the bad gut bugs ferment...they ferment LPS that can cause autistic symptoms...among other things. > > WE had grand success with SCD.....this is why....but she still was not digesting fats and proteins.....therefore explaining the remaining problems we have with SCD. She never was able to advanced to harder to digest SCD foods either. I thought I was doing SCD wrong....this is when I turned to be a SCD " fanatic " .....after 17 months of SCD fanatic...she still could not digest a raw carrot....her poops remained to stink...and there was undigested fats and proteins. A gross icky stench...a vomitous poopy smell. We decided to look into this. This is when Dr. Stathos here in Denver discovered her PI (worth a flight...if you can not find a GI doctor near that knows this). With prescription strength and very powerful enzymes she now can digest all of her food better. It ends up that her pancreas was only doing 70% of it's job. She is taking the same enzymes as a Cystic Fibrosis child and now having her second level of success! > > Undiagnosed PI makes a person prisoner to the SCDiet....and worse....some parents start to feed their child " Vegan " alternatives (to control the symptoms)....the last thing a child needs to grow healthy and well! Or throw in the towel on SCd...saying it " will not work " . > > When treated properly....PI is no longer a problem. When it originates from mitochondrial disease...the mitochondrial disease truly needs to be addressed too. Beware of simple tests that claim that a child does not have PI or Mito. PI has to be accurately accessed with anesthesia and testing of the pancreas (unless you can find a doctor that is willing to just treat the child " as if " and when they improve...they know what it is!) . > > Last note: None of these test can be done by a typical doctor. ONLY a GI specialist that knows about PI and autism and a mito specialist that knows all forty conditions can truly help your child, if they have this. Call your AUTISM SOCIETY for referrals for good GI doc....go to www.umdf.org<http://www.umdf.org/> To find a mito specialist. > > " The important thing is never to stop questioning. " > -Albert Einstein > > Sincerely and God bless your healing journey, > Antoinette and the zoo! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Yes, that was what Meleah was suggesting below and what we had tried. My son just likes chewing capsules & we can't get past that at the moment! - Glynis Steele wrote: ---Hi , I hope you don't mind me butting in, but have you looked at oralflo.com to help your son swallowing pills? It is a sippy cup, but with a longer spout, in which you place the pill to be swallowed. When a regular drink is taken, the pill is swallowed with it. Hope this is useful. Regards Glynis mam to Jasmine 7 yrs Diagnosed with Kabuki Syndrome NG tube fed In pecanbread , Rob or Sunseri wrote: > > We tried that. The problem is that he doesn't really have an aversion to swallowing pills, it's that he likes/loves to chew: fish oil caps, candex, s. boulardii and a few mineral caps. So then when you try to get him to swallow, he immediately chews it and if it tastes horrible he of course spits it out and looks at you like " why did you put that horrible stuff in my yummy capsule? " We can't seem to get past this preference of chewing the caps. Since he's willing to chew some pretty wierd tasting capsules, he continues to think of capsules as chewables. > > - > > robin wrote: > , > What about the Oralflo cup that is used to help those with swallowing disorders or just an aversion to swallwing pills? > Meleah > Re: Re: Article on mitochondrial disease more info on Kiki > > The prescription enzymes must be swallowed. I am wondering how I will get my child to do this if he does have a problem with his pancreas. My 3 YO daughter can swallow, but not my son. Our GI is doing autism research with the doctors at the Thoughtful House, so she knows autism, but shouldn't any decent GI know when to test for PI (you would think!)? > > Also, you said that your daughter has a mito disese, but you don't yet know which one. Which test is definitive for having one and which one tells you the type? > > - > > Bunce wrote: > HI , > > The only way to test for mitochondrial diseases accurately is to do a muscle biopsy, arterial blood draws and spinal tap. It can not be done by just anyone...these tests are so advanced that there are only six in the country that know how to do them accurately. I am sorry...for us mom's this is not cool....but for us we had to finally give in and do it. > > The other tests miss many of these conditions. Many reasons to why...to many to mention here. www.umdf.org<http://www.umdf.org/> can tell you. Call them! > > Dr. Cohen (Cleveland Ohio) and Dr. Shoffner (Atlanta Georgia) are the best. They know to test for all FORTY, plus look into mitochondrial problems that are not classical in origin. You truly do not know if your child doesn't have this if they where not the ones testing. Sadly to say...there have even been children that have to have a second muscle biopsy because home town doctors did not do them right! > > THIS IS WHAT I meant about SCDiet and Pancreatic Insufficiency or PI: > > With PI a child does not digest foods properly. A child can be " allergic " or " intolerant " to lots of things...the gut gets full of bad gut bugs...of every kind and variety...causing ASD symptoms. They can not digest Carbohydrates, FATS and Proteins...the ferment...they putrefy....a mess....LPS causes havoc on the body....a true " vicious cycle " . My daughter once was " allergic " to food. AS you know Foods are made up of Carbohydrates, Fats and proteins. > > a.. SCDIET deals with the carbohydrate problem excellently! It is all monosaccharide...making it easy for a child with PI to be able to handle foods better, because very little needs to be done to the food to absorb it. Although harder to digest SCD foods will remain a problem, even after significant time on " fanatical " SCD. (THIS is a RED FLAG that a child has PI!) > b.. SCD does not help with putrefying proteins and fats that are not digested. It does not restrict them (nor should it, the developing child/human body needs them ). Yet with PI, some of the bad gut bugs that result from putrefying proteins can not be starved out by eating the monosaccharide....they do not thrive on carbohydrates.....they EAT PROTEINS And FATS that are left behind in the gut thanks to PI. Keeping a vicious cycle of another variety alive...causing some of the remaining issues of ASD. Even Elaine knew that some bad gut bugs could not be starved out by SCD alone. > c.. Many of these ASD kids have PI....we just have not had it diagnosed yet. This causes " food jags " ...and pain when a child eats things that they can not digest.......constipation....diarrhea......making some of the strange food jags they kids have. I call it " self preservation " ....eventhough it drives us parents crazy. With proper treatment...a ASD child can learn to be able to trust foods better and can EAT everything on the SCDiet! Takes time...but she is now learning to TRUST food. > So.....SCD is going to help....but not completely when a child has PI. > > ***But just dealing with the carbohydrate gut bugs is MORE THAN HALF THE BATTLE! The results to just ending this...where amazing. Her seizures stopped....and her deliriums stopped.....so much more. Mimi, is finding out that this is related to LPS. You see...when the bad gut bugs ferment...they ferment LPS that can cause autistic symptoms...among other things. > > WE had grand success with SCD.....this is why....but she still was not digesting fats and proteins.....therefore explaining the remaining problems we have with SCD. She never was able to advanced to harder to digest SCD foods either. I thought I was doing SCD wrong....this is when I turned to be a SCD " fanatic " .....after 17 months of SCD fanatic...she still could not digest a raw carrot....her poops remained to stink...and there was undigested fats and proteins. A gross icky stench...a vomitous poopy smell. We decided to look into this. This is when Dr. Stathos here in Denver discovered her PI (worth a flight...if you can not find a GI doctor near that knows this). With prescription strength and very powerful enzymes she now can digest all of her food better. It ends up that her pancreas was only doing 70% of it's job. She is taking the same enzymes as a Cystic Fibrosis child and now having her second level of success! > > Undiagnosed PI makes a person prisoner to the SCDiet....and worse....some parents start to feed their child " Vegan " alternatives (to control the symptoms)....the last thing a child needs to grow healthy and well! Or throw in the towel on SCd...saying it " will not work " . > > When treated properly....PI is no longer a problem. When it originates from mitochondrial disease...the mitochondrial disease truly needs to be addressed too. Beware of simple tests that claim that a child does not have PI or Mito. PI has to be accurately accessed with anesthesia and testing of the pancreas (unless you can find a doctor that is willing to just treat the child " as if " and when they improve...they know what it is!) . > > Last note: None of these test can be done by a typical doctor. ONLY a GI specialist that knows about PI and autism and a mito specialist that knows all forty conditions can truly help your child, if they have this. Call your AUTISM SOCIETY for referrals for good GI doc....go to www.umdf.org<http://www.umdf.org/> To find a mito specialist. > > " The important thing is never to stop questioning. " > -Albert Einstein > > Sincerely and God bless your healing journey, > Antoinette and the zoo! > > Quote Link to comment Share on other sites More sharing options...
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