Guest guest Posted August 24, 1998 Report Share Posted August 24, 1998 who was tube fed by ng tube for 4 months could not tolerate bolus feeds at all. His rate varied from good to bad day from 30-60 cc a hour. Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic gastroenteritis, fundo 10/96) ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Bolus feeding > Date: Monday, August 24, 1998 2:04 PM > > From: SJHarlow@... > > > Just curious on this list.. who tube feeds their kids and how much are > you able to feed, rates, etc? Is anyone actually able to bolus feed > their EG/EE kid? > > SJHarlow@... > http://www.c4isr.com/harlow > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1998 Report Share Posted August 24, 1998 DAWN THAT IS SO ENLIGHTENING' Make sure you tell ol' Jeffy boy about that RATE. That is EXACTLY what Kody has been 30-60cc/hr and he cannot tolerate any more. VERY INTERESTING SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1998 Report Share Posted August 24, 1998 is tube fed and cannot tolerate bolus feeds. He can now tolerate 250cc an hour, but he is almost 9 years old. He also has pulled his button out, but I always have a spare at home. My doctors encouraged me to have an extra and they also gave me the confidence to change it myself. The worst part is pulling out the old button. Last time it was very difficult and in the end wound up bleeding. Fortunately, he is very brave. I also wanted to say that for us, it took many years of Neocate exclusively for to stay well, but in the end, he is now tolerating more and more foods. We didn't think it would ever be possible for him to eat. Recently the discussion included speech problems, which recieved many years of therapy for. Another problem we have run into now that he is almost in third grade, is memory problems. We were told by our school psychologist that people that have full systemic problems also have problems with memory. We will be working on this when school starts again. Has anyone else heard anything like this? Suzanne Wool ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Bolus feeding > Date: Monday, August 24, 1998 7:04 PM > > From: SJHarlow@... > > > Just curious on this list.. who tube feeds their kids and how much are > you able to feed, rates, etc? Is anyone actually able to bolus feed > their EG/EE kid? > > SJHarlow@... > http://www.c4isr.com/harlow > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 : Please feelw free to forward any of the information that you have gotten on CLayton. Pnce you compile it all maybe you can send it to the list. love, sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 Hi Suzanne and thanks for your input. I am getting a lis of all this suff together. We seem to have a prevalence of many things heretofore not acknowledged in the literature. As the write up on our kids has not been published yet, this stuff should be included and I am forwarding the info I get here to our peds GI. Anyone who does NOT want info forwarded on, please tell me. As far as memory problems, my DD/speech delayed EE kid is only 3 and I cant tell yet if he has memory problems. I do have two lesser-involved EE kids withOUT speech or dev delays SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 In a message dated 98-08-24 16:13:53 EDT, you write: << Just curious on this list.. who tube feeds their kids and how much are you able to feed, rates, etc? Is anyone actually able to bolus feed their EG/EE kid? >> Clayton just started tube feeds as you are well aware. They want him up to 90ccs an hour but this seems like wishful thinking. He was having a hard time handling 60cc. We went back down to 40ccs and are gradually working back up to 60. We have not done any bolus feeds but anytime I put the medicine in the tube he screams. love, sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and possible latex allergy, some dd and undiagnosed neuro issues) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 In a message dated 98-08-24 17:43:11 EDT, you write: << His rate varied from good to bad day from 30-60 cc a hour. >> THis seems to be what is happening to Clatyon - one day he retched all night a 60 and the next he was fine but clearly does better at a slower rate. However, if we feed him at a slower rate how do we get the calories in him? love, sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and possible latex allergy, some dd and undiagnosed neuro issues) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 Sharon, if you feed him at a slower rate, you just HAVEto keep the pump on 24 hours a day. For a few weeks (before te prednisone) we could not get Kody above 30-35cc/hr and he would eventually get a little dedhydrated. At (then) 28 lbs, he needed a minimum of 45cc/hr over 24 hours to maintain hydration. Now (on prednisone) he can tolerate 60cc/hr and we keep him on at least 22 hrs/day. He is gaining weight on this! SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1998 Report Share Posted August 26, 1998 In a message dated 98-08-25 23:46:23 EDT, you write: << At (then) 28 lbs, he needed a minimum of 45cc/hr over 24 hours to maintain hydration. >> Clayton is around 20 pounds or so so he only needs around 24 ounces to keep him hydrated and at last 32 ounces to gain weight. I really do not want to keep him on the pump all day. We go to the surgeon tomorrow for our post op visit and will see Dr. next Wednesday (he is on vacation right now) and will discuss his feedings. THey do not want to feed him all day as they do really want to try to encourage him to eat by mouth. We will see. He has basically been on a sole Neocate diet since he was 6 months old except for certain food which we clearly know do not cause problems. love, sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and possible latex allergy, some dd and undiagnosed neuro issues) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1998 Report Share Posted August 26, 1998 In a message dated 8/24/98 3:13:46 PM Central Daylight Time, SJHarlow@... writes: << Is anyone actually able to bolus feed their EG/EE kid? >> Ben is on 3 bolus feeds a day of 180cc. I run it on the pump at 270 cc/hr. Then at night he is on a drip at 60cc/hr for 6.5 hours. It has taken us a year to work to this point. When he gets sick it all goes out the window. Jane 5-24-97 EG/MSPI- GERD- physical and motor lags. 11-2-95 Quote Link to comment Share on other sites More sharing options...
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