Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Judy, If is spilling large ketones and you cannot get rid of them by getting him to drink Gatorade, then he needs an IV with 10% Dextrose. He is on his way to becoming hypoglycemic and the only way to balance things out is to get this IV. Salem has the protocol. Her email address is magicrss@.... But I can tell you from experience both with my own son and Dr. Harbison that this is very important to do. If this is not done, then COULD become acidotic and his whole system will be thrown out of whack. He would start vomiting and not be able to stop no matter what you do. He would need " gut rest " which involves a longer hospital stay. If need be, call Dr. Harbison's office at 212-746- 3462 and ask to speak to her. And if your doctor does not call back, call again and again. Jodi > > > Colin is 14 mo. old and still is 100% tube fed, but making great > > > progress on his interest in foods and putting things in his mouth. > > > The feeding clinic doesn't have great success with periactin and > > > doesn't usually recommend it, but is willing to give it a try for > > > Colin. They want to wait another 4-6 months however because they > > are > > > concerned he wouldn't know what to do with actual " hunger " and > > would > > > become extremely cranky. Colin has sensory issues and they feel he > > > need to work through some of these before we give it a try. > > Insurance > > > has approved weekly visits for OT and we're just on the waiting > > list. > > > He does receive therapy from EI once a month (not nearly enough > > > therapy). > > > > > > I was hoping some of you with tube fed kids could share with me > > your > > > progression to eating real food and if you had success with > > > periactin, when you started, etc. > > > > > > Colin is in the process of switching from enfamil formula to > > > pediasure. So far so good and it has even reduced his reflux. Not > > to > > > jinx anything, but he hasn't vomited in a few weeks now. I'm not > > sure > > > if he is just outgrowing it, or if it is due to the pediasure. But > > it > > > sure makes life easier on me! > > > > > > Thanks for your input, > > > > > > Colin & Hayden - 14 mo. twins > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Judy, If is spilling large ketones and you cannot get rid of them by getting him to drink Gatorade, then he needs an IV with 10% Dextrose. He is on his way to becoming hypoglycemic and the only way to balance things out is to get this IV. Salem has the protocol. Her email address is magicrss@.... But I can tell you from experience both with my own son and Dr. Harbison that this is very important to do. If this is not done, then COULD become acidotic and his whole system will be thrown out of whack. He would start vomiting and not be able to stop no matter what you do. He would need " gut rest " which involves a longer hospital stay. If need be, call Dr. Harbison's office at 212-746- 3462 and ask to speak to her. And if your doctor does not call back, call again and again. Jodi > > > Colin is 14 mo. old and still is 100% tube fed, but making great > > > progress on his interest in foods and putting things in his mouth. > > > The feeding clinic doesn't have great success with periactin and > > > doesn't usually recommend it, but is willing to give it a try for > > > Colin. They want to wait another 4-6 months however because they > > are > > > concerned he wouldn't know what to do with actual " hunger " and > > would > > > become extremely cranky. Colin has sensory issues and they feel he > > > need to work through some of these before we give it a try. > > Insurance > > > has approved weekly visits for OT and we're just on the waiting > > list. > > > He does receive therapy from EI once a month (not nearly enough > > > therapy). > > > > > > I was hoping some of you with tube fed kids could share with me > > your > > > progression to eating real food and if you had success with > > > periactin, when you started, etc. > > > > > > Colin is in the process of switching from enfamil formula to > > > pediasure. So far so good and it has even reduced his reflux. Not > > to > > > jinx anything, but he hasn't vomited in a few weeks now. I'm not > > sure > > > if he is just outgrowing it, or if it is due to the pediasure. But > > it > > > sure makes life easier on me! > > > > > > Thanks for your input, > > > > > > Colin & Hayden - 14 mo. twins > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Judy, If is spilling large ketones and you cannot get rid of them by getting him to drink Gatorade, then he needs an IV with 10% Dextrose. He is on his way to becoming hypoglycemic and the only way to balance things out is to get this IV. Salem has the protocol. Her email address is magicrss@.... But I can tell you from experience both with my own son and Dr. Harbison that this is very important to do. If this is not done, then COULD become acidotic and his whole system will be thrown out of whack. He would start vomiting and not be able to stop no matter what you do. He would need " gut rest " which involves a longer hospital stay. If need be, call Dr. Harbison's office at 212-746- 3462 and ask to speak to her. And if your doctor does not call back, call again and again. Jodi > > > Colin is 14 mo. old and still is 100% tube fed, but making great > > > progress on his interest in foods and putting things in his mouth. > > > The feeding clinic doesn't have great success with periactin and > > > doesn't usually recommend it, but is willing to give it a try for > > > Colin. They want to wait another 4-6 months however because they > > are > > > concerned he wouldn't know what to do with actual " hunger " and > > would > > > become extremely cranky. Colin has sensory issues and they feel he > > > need to work through some of these before we give it a try. > > Insurance > > > has approved weekly visits for OT and we're just on the waiting > > list. > > > He does receive therapy from EI once a month (not nearly enough > > > therapy). > > > > > > I was hoping some of you with tube fed kids could share with me > > your > > > progression to eating real food and if you had success with > > > periactin, when you started, etc. > > > > > > Colin is in the process of switching from enfamil formula to > > > pediasure. So far so good and it has even reduced his reflux. Not > > to > > > jinx anything, but he hasn't vomited in a few weeks now. I'm not > > sure > > > if he is just outgrowing it, or if it is due to the pediasure. But > > it > > > sure makes life easier on me! > > > > > > Thanks for your input, > > > > > > Colin & Hayden - 14 mo. twins > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 Thank you VERY much for your input. I finally was able to get through to the doctor. Since he has a g-tube, we are going to try pedialyte with polycose at 75 cc/hour over the next 12 hours. I have a strong suspicion that he will start to vomit on that volume, but I pray not. If he vomits, we are off to the hospital for an iv and gut rest. I will send an e-mail to for the protocol. Thanks again. You are the best. Judy Re: Ketones > Judy, > > If is spilling large ketones and you cannot get rid of them > by getting him to drink Gatorade, then he needs an IV with 10% > Dextrose. He is on his way to becoming hypoglycemic and the only > way to balance things out is to get this IV. Salem has the > protocol. Her email address is magicrss@.... But I can > tell you from experience both with my own son and Dr. Harbison that > this is very important to do. If this is not done, then > COULD become acidotic and his whole system will be thrown out of > whack. He would start vomiting and not be able to stop no matter > what you do. He would need " gut rest " which involves a longer > hospital stay. If need be, call Dr. Harbison's office at 212-746- > 3462 and ask to speak to her. And if your doctor does not call > back, call again and again. > > Jodi > > > > > > > > > > > Colin is 14 mo. old and still is 100% tube fed, but making > great > > > > progress on his interest in foods and putting things in his > mouth. > > > > The feeding clinic doesn't have great success with periactin > and > > > > doesn't usually recommend it, but is willing to give it a try > for > > > > Colin. They want to wait another 4-6 months however because > they > > > are > > > > concerned he wouldn't know what to do with actual " hunger " and > > > would > > > > become extremely cranky. Colin has sensory issues and they > feel he > > > > need to work through some of these before we give it a try. > > > Insurance > > > > has approved weekly visits for OT and we're just on the waiting > > > list. > > > > He does receive therapy from EI once a month (not nearly enough > > > > therapy). > > > > > > > > I was hoping some of you with tube fed kids could share with me > > > your > > > > progression to eating real food and if you had success with > > > > periactin, when you started, etc. > > > > > > > > Colin is in the process of switching from enfamil formula to > > > > pediasure. So far so good and it has even reduced his reflux. > Not > > > to > > > > jinx anything, but he hasn't vomited in a few weeks now. I'm > not > > > sure > > > > if he is just outgrowing it, or if it is due to the pediasure. > But > > > it > > > > sure makes life easier on me! > > > > > > > > Thanks for your input, > > > > > > > > Colin & Hayden - 14 mo. twins > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 Thank you VERY much for your input. I finally was able to get through to the doctor. Since he has a g-tube, we are going to try pedialyte with polycose at 75 cc/hour over the next 12 hours. I have a strong suspicion that he will start to vomit on that volume, but I pray not. If he vomits, we are off to the hospital for an iv and gut rest. I will send an e-mail to for the protocol. Thanks again. You are the best. Judy Re: Ketones > Judy, > > If is spilling large ketones and you cannot get rid of them > by getting him to drink Gatorade, then he needs an IV with 10% > Dextrose. He is on his way to becoming hypoglycemic and the only > way to balance things out is to get this IV. Salem has the > protocol. Her email address is magicrss@.... But I can > tell you from experience both with my own son and Dr. Harbison that > this is very important to do. If this is not done, then > COULD become acidotic and his whole system will be thrown out of > whack. He would start vomiting and not be able to stop no matter > what you do. He would need " gut rest " which involves a longer > hospital stay. If need be, call Dr. Harbison's office at 212-746- > 3462 and ask to speak to her. And if your doctor does not call > back, call again and again. > > Jodi > > > > > > > > > > > Colin is 14 mo. old and still is 100% tube fed, but making > great > > > > progress on his interest in foods and putting things in his > mouth. > > > > The feeding clinic doesn't have great success with periactin > and > > > > doesn't usually recommend it, but is willing to give it a try > for > > > > Colin. They want to wait another 4-6 months however because > they > > > are > > > > concerned he wouldn't know what to do with actual " hunger " and > > > would > > > > become extremely cranky. Colin has sensory issues and they > feel he > > > > need to work through some of these before we give it a try. > > > Insurance > > > > has approved weekly visits for OT and we're just on the waiting > > > list. > > > > He does receive therapy from EI once a month (not nearly enough > > > > therapy). > > > > > > > > I was hoping some of you with tube fed kids could share with me > > > your > > > > progression to eating real food and if you had success with > > > > periactin, when you started, etc. > > > > > > > > Colin is in the process of switching from enfamil formula to > > > > pediasure. So far so good and it has even reduced his reflux. > Not > > > to > > > > jinx anything, but he hasn't vomited in a few weeks now. I'm > not > > > sure > > > > if he is just outgrowing it, or if it is due to the pediasure. > But > > > it > > > > sure makes life easier on me! > > > > > > > > Thanks for your input, > > > > > > > > Colin & Hayden - 14 mo. twins > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 For the first time this morning, showed a trace of ketones. What are we supposed to do when this happens? Judith, Steve, (RSS) and (non RSS) 2 yr old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Judith, If is waking up with ketones, then it means that he needs more to help him get through the night. Are you using cornstarch in his milk before bed? If not, then perhaps you should start. You can try 2 teaspoons mixed with whatever cold drink he will take. If that keeps the ketones down, then you are okay. You may need to add more cornstarch, though. The other thing to do when has ketones is feed him - especially liquids. They will flush the ketones out. Mark is correct, though. You should also try some sort of glucose as an immediate treatment. We used to just squirt icing under Max's tongue - you know, the kind in the small tubes from the grocery store. I would keep a record of the ketone levels and what has or has not been eating so that you can report this to Dr. H. You may be able to establish a pattern without even realizing it. If you need more guidance, call me or email me. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Judith, If is waking up with ketones, then it means that he needs more to help him get through the night. Are you using cornstarch in his milk before bed? If not, then perhaps you should start. You can try 2 teaspoons mixed with whatever cold drink he will take. If that keeps the ketones down, then you are okay. You may need to add more cornstarch, though. The other thing to do when has ketones is feed him - especially liquids. They will flush the ketones out. Mark is correct, though. You should also try some sort of glucose as an immediate treatment. We used to just squirt icing under Max's tongue - you know, the kind in the small tubes from the grocery store. I would keep a record of the ketone levels and what has or has not been eating so that you can report this to Dr. H. You may be able to establish a pattern without even realizing it. If you need more guidance, call me or email me. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Judith, If is waking up with ketones, then it means that he needs more to help him get through the night. Are you using cornstarch in his milk before bed? If not, then perhaps you should start. You can try 2 teaspoons mixed with whatever cold drink he will take. If that keeps the ketones down, then you are okay. You may need to add more cornstarch, though. The other thing to do when has ketones is feed him - especially liquids. They will flush the ketones out. Mark is correct, though. You should also try some sort of glucose as an immediate treatment. We used to just squirt icing under Max's tongue - you know, the kind in the small tubes from the grocery store. I would keep a record of the ketone levels and what has or has not been eating so that you can report this to Dr. H. You may be able to establish a pattern without even realizing it. If you need more guidance, call me or email me. Jodi Quote Link to comment Share on other sites More sharing options...
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