Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 Dawn-thanks for asking about Arissa. I am in tears as I read all the mail. We still have her on Neocate only but she is on her third nap of the day. She was having such a crying spell, I called the GI and said admit her to the hospital or me to the insane asylum. I know it takes time for the other foods to get out of the system. But I would think since her biopsy was so good, that her system should be pretty clean. She is Dr. Jekyll/Mr. Hyde. At least she is not asking for food which makes all this easier. She goes on these endless crying spells and then falls asleep or calms down and it is like nothing ever happened. The doc feels like it might not be the GI tract since she was like this with her four foods, and now on just Neocate. But she was great without anything. We discussed starting Predisone or putting her in and doing IV fluids. He wants to consult with Dr. Sampson before doing anything and promises to call by tomorrow (Wednesday) afternoon. What is it then???? Dr. Sampson does believe there is bad Neocate out there. She is on the juice boxes not the powder like he prefers. Could it be the Neocate. One thing is for sure, my nerves are shot. I hope after 3 naps from a child who doesn't always nap, that she isn't up all night!! She has slept the past two nights though. She has only done that while on clear liquids-water-before the scopes. If you spot a bald mom-it is me, from pulling my hair out!!! What are bolus feedings?? Phyllis-mom to Arissa (12/22/95) EG, multiple food allergies, occasional asthma Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and latex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1998 Report Share Posted August 25, 1998 Phyllis I am so sorry you are having a rough time and yes, there does appear to be a difference in the juice boxes and the powder. The powder is cheaper, can you switch??? Bolus feedings are what " normal " tube fed kids are on, they get their feedings split up over 3-4 " meals " a day, where they get a large amount at once or over a 20-30 minute period. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1998 Report Share Posted August 27, 1998 Hi Phyllis, Have you heard back from the GI? I asked our GI yesterday about how takes 2-3 naps a day and then goes to bed at night fine. He said chronic belly pain does correspond with that but in 's case, they are trying to figure out if the Prednisone is actually causing the pain now. Funny, the med you give them to keep them out of pain can actually cause pain, go figure! Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic gastroenteritis, fundo 10/96) ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Arissa > Date: Tuesday, August 25, 1998 5:16 PM > > > > Dawn-thanks for asking about Arissa. I am in tears as I read all the mail. > We still have her on Neocate only but she is on her third nap of the day. > She was having such a crying spell, I called the GI and said admit her to > the hospital or me to the insane asylum. I know it takes time for the > other foods to get out of the system. But I would think since her biopsy > was so good, that her system should be pretty clean. She is Dr. Jekyll/Mr. > Hyde. At least she is not asking for food which makes all this easier. > She goes on these endless crying spells and then falls asleep or calms down > and it is like nothing ever happened. The doc feels like it might not be > the GI tract since she was like this with her four foods, and now on just > Neocate. But she was great without anything. We discussed starting > Predisone or putting her in and doing IV fluids. He wants to consult with > Dr. Sampson before doing anything and promises to call by tomorrow > (Wednesday) afternoon. What is it then???? Dr. Sampson does believe there > is bad Neocate out there. She is on the juice boxes not the powder like he > prefers. Could it be the Neocate. One thing is for sure, my nerves are > shot. I hope after 3 naps from a child who doesn't always nap, that she > isn't up all night!! She has slept the past two nights though. She has > only done that while on clear liquids-water-before the scopes. If you spot > a bald mom-it is me, from pulling my hair out!!! > > What are bolus feedings?? > Phyllis-mom to > Arissa (12/22/95) EG, multiple food allergies, occasional asthma > Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and > latex > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1998 Report Share Posted August 29, 1998 Phyllis We have been made aware of some of the kids that have reacted to the juice boxes. I am going to pull Luke off of it for awhile because I have questioned canola oil in the past and feel he may be reacting to that in the neocate. We also have an older child (12) that was unable to tolerate the orange- pineapple boxes. If you are interested in more info on this email me and good luck. Quote Link to comment Share on other sites More sharing options...
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