Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 In a message dated 2/25/99, 4:52:09 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > When was on the NG tube we could not do any feedings this way. He would scream in pain. We always used the pump. I can't remember now what the highest rate was that he could tolerate. Jen (, 11/7/95, eosinophilic esophagitis, food allergies, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 For some reason I have had no problems with Dr. Sampsons office but he used to work with Dr. and when I have questions I usually e-mail Shideah - his nutritionist and she gets the answers for me. We were supposed to see him in January but have postponed our visit as we are awaiting an admission to KKI (kennedy kreiger) to see if we can get CLayton to eat. He is a very good doctor - but he does lots of research and only sees 10 patients a week - only has appointments 2 mornings a week. He was very helpful and Shideah is wonderful and knowledeable and we correspond often - especially regarding what types of foods we can give CLayton, regarding his switch from Neocate to Vivonex Pediatric and regarding oils and food ingredients he can have. Love, Sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sensory integration disorder and now tremors and suspected metabolic disorder, WHEN WILL THIS END Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 When BJ had his ng tube, we could not do bolus feedings at all. We had to go through a pump over 1-2 hours for each can. Otherwise, he got tummy aches and diarrhea too. Dawn, mommy to Dakota, 6 and BJ, 3 (eosinophil gastroenteritis, reflux, asthma, fundo 10/96, ear tubes 7/98, chronic tonsilitis) selias wrote: > > > Miriam's update: > For the last 2 weeks we were in and out of the hospital with her. the > doctors let her go up to 2 weeks on her hunger strike then they finally > hospitalized her and put the NG tube in her. It was disappointing to have > to go back to it she took Pedatric vivanex orally for a year and a half. > The one good thing that came out of the hospital stay is we are in the > middle of trying chicken on her so far no allergic reactions but she does > have a lot of tummy aches and diareah. I also have been finding that she is > much more tired than she usually is. We are home with her and she is very > proud of her tube (that was until someone called her an elephant since then > she doesn't want to go to the park or out of the house so much she is > afraid someone will make fun of her.) She is back in play group and even > the teacher offered to feed her during snack time which is amazing. > For those on NG tubes do you find if it is pushed through to fast with a > syringe that you have bad stomache aches. How long does it take to push > through a feeding with a syringe. > Does anyone use Dr Hugh Sampson? If so how does one relate to him to keep > on his good side . He is admitting my 2 kids in his research clinic in the > beginning of May and I have been told that it is only for 5 days . I have > been trying to get through to him and his nurse to find out if that is all > the time he is going to work on them or if it will be longer .I have to > know all this it is not easy to come from over seas with 2 little kids by > myself I need time to organize everything. I have e-mailed him a few times > and when my mother spoke to the office they were rude to her . How is the > best way to get the info I need already to make arrangements. I f anyone > knows him and could give helpful hints on how to get the info I need.Please > let me know. > > > Thank You > Shana (mom to Miriam 3,food intolerance to everything solely on vivanex 2 > years Ng tube now, Yisroel 19 months food intolerance to everything solely > on mothers milk,asthma,Tehilla 7 starting with allergies and eczema > > > ---------- > > From: Jenericm@... > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Updates > > Date: Wednesday, February 24, 1999 4:50 PM > > > > From: Jenericm@... > > > > The list has been quiet lately and I was wondering how everyone is doing. > I > > would really like to hear updates from everyone on the list. > > > > 's Update > > > > We were at the GI on Monday. It was a good visit. is still > gaining > > weight but his growth is still a little slow. His diet remains very > > restricted but he really has adjusted well to it. He is not 100% symptom > free > > but on the whole is doing very good. The doc suggested the possiblility > of > > another scope in the fall. Though I hate putting through it, I > think > > this is a good idea. I really would like to know where we stand at this > > point. > > > > Jen > > ( 11/7/95, EE, Food allergies, asthma) > > > > ------------------------------------------------------------------------ > > We now have over 85,000 e-mail communities. Check out our new web site! > > http://www.onelist.com > > ------------------------------------------------------------------------ > New hobbies? New curiousities? New enthusiasms? > http://www.onelist.com > Sign up for a new email list today Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Shana- We took AJ to see Dr. Sampson this past July. Everyone was very nice while there but I found it impossible to get in touch with him also. The pediatric nutritionist, Shideh, told me that even she needs to make appointments with him!! His office didn't return calls to AJ's doctors offices when they had questions. We walked out of there with a diagnosis, EG, but our local GI and others are handling AJ. It was just too frustrating to deal with his office. Wish I could be more encouraging. Phyllis Mom to AJ, 3, EG, asthma, reflux, many many allergies and Remi, 6 1/2, Spina Bifida, Latex, nuts, peanuts and shellfish allergies. Quote Link to comment Share on other sites More sharing options...
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