Guest guest Posted August 24, 1998 Report Share Posted August 24, 1998 Hi, I called Dr. Bornstein this morning and left a message on his machine. I haven't been online too much today because I have been trying to keep the line clear for him to call back along with our current GI on what we are supposed to do now. I am not putting him in the hospital. It just will not solve any of his problems. > > I guess I can't relate to your reluctance to go to just GT feedings. > For us it does not seem to be a choice because Kody cannot tolerate > bolus feeds. He has to be tube fed and since we got the Zevex pump, it > is a non-issue. IT does not limit him (at all) or us in any way and has > proven to be a valuable asset in his treatment. > I think the hubby and I are not as reluctant as our GI. He seems really anti-GT. At first that was one of the things we liked about him. That was before we knew how much eating was really hurting and then when was on ng tube feedings and we saw the difference in him, I think we decided to go to the GT. But, Dr. Friesen assured us that through an elimination diet, we would find foods could eat without trouble. We found hamburger and potatoes. Now he seems to be allergic to them. > More power to you guys that can get your kids to drink Neocate. We had > NO luck with that one, he took one sip, one time and never again. Oh > well. .. > Boy, I was so glad to read this, that stuff tastes awful and is very finicky. I think maybe if he was never allowed milk, we might have had more luck but wasn't diagnosed until he was 2. Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic gastroenteritis, fundo 10/96) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1998 Report Share Posted August 24, 1998 In a message dated 98-08-23 22:21:14 EDT, you write: << More power to you guys that can get your kids to drink Neocate. We had NO luck with that one, he took one sip, one time and never again. Oh well. .. >> I guess the main reason Clayton was able to take the Neocate by mouth was that he started on it a 6 months of age and was on nutramagin before that. We also added a little vanilla flavoring (per the GI) initially to get him to drink it and by the end of the first week he drank it with no problem. THe problem started in Aprim when we switched to the 1+ - he then went from drinking 60 ounces a day to thirty and then by June to less than 16 ounces, Now with the tube he takes maybe 4-6 ounces of the Neocate 1+ by mouth. love, sharon mommy to Jake (5) and fraternal twins (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 Hi, I called our ped at the base hospital who agreed that Dr. Bornstein would be a great doctor to try. He is writing the referral. Are you Tricare? We had lots of problems with Tricare and therefore, disenrolled. I called STOMP(Specialized Training of Military Parents) and she was quite sure Tricare should have been paying for our mileage while we have been driving to Kansas City and back since there are NO local gastroenterologists or pulmonologists. We were told at the local service center that Tricare does not pay for transportation. The lady at STOMP also said according to her records, they can go back a year. We are checking on this today. Our ped is also going to call and talk to Dr. Bornstein about . 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] reply > Date: Sunday, August 23, 1998 9:20 PM > > From: SJHarlow@... > > Dawn, > > I think I was answering some of your questions to me yesterday but got > distracted mid-post and could not return until now. > > If you want to contact our kids GI, he is back from vacation tomorrow. > His name is Jeff Bornstein and voice number is . He LISTENS > to what I have to tell him and has always respected the fact that I see > my children round the clock and none of them do. Putting my kids on the > " roids " as he calls them was a last resort and he hates it as much as I > do. As far as you having a " choice " on giving the kids prednisone, I > would think that would be dictated by the child;s response and symptoms. > > I guess I can't relate to your reluctance to go to just GT feedings. > For us it does not seem to be a choice because Kody cannot tolerate > bolus feeds. He has to be tube fed and since we got the Zevex pump, it > is a non-issue. IT does not limit him (at all) or us in any way and has > proven to be a valuable asset in his treatment. > > More power to you guys that can get your kids to drink Neocate. We had > NO luck with that one, he took one sip, one time and never again. Oh > well. .. > > 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 Dawn, We did NOT sign up for Tricare Prime, we stayed with Standard and use the usual CHAMPUS. We do have to pay that first 1000 each year, but that takes less than one month, we know it is coming and then we don't pay anoher penny. Dr. B is " on call " for me 24/7 and I don't even go through the appt desk so getting tio them is not a problem. He is a great doc, very attentive. You will be impressed. He will be ALL over me for sendng him another EG kid but he loves a challenge!! Good luck SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 1998 Report Share Posted December 22, 1998 Thanks for the offer to send me the videotape. I live in Seattle, Washington, USA but I don't think I need to see the whole thing. Your report will suffice. To correct a misunderstanding. Tina, the American band will actually hold 40 cc before ir ruptures. I understand the average is between 4 to 7 cc in the band--depends on how it was installed. In Seattle the first adjustment is after 1 month (not 3). The band has to sclerose (scar tissue forms around it) to help hold it in place although my Mexican surgeon says he pins them down really well with sutures and has never had one slip. I would agree your surgeon is cautious. However, it took us a long time to get fat and we have to be patient. Years from now it won't matter if it took 8 or 12 months to lose. I had my surgery 10/2/98 and have only lost 27 lbs. But the band was wide open for the first month--and not very closed for the second month. I have had 3 adjustments and now have about 4.5 cc in the band. My goal is to lose 1 or 2 l bs. a week but I understand there maybe some plateaus. I don't see as much about protein on this mail list as I do on other weight loss surgery lists. Do people feel this is absolutely necessary ? I find the protein drinks gross and try to eat lots of protein foods instead. So far no unusual hair loss. I had lots of hair loss when I was on a very low calorie high protein diet (all liquid shakes) a couple years ago so I am personally not convinced that drinking that stuff will save my hair. Besides I hear it all grows back when the weight stabilizes. What do others think? What have you been told? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1998 Report Share Posted December 23, 1998 We do not need to watch our protein intake because we have not had any intestine removed. Rny's have malabsorbtion and have different dietary requirements to us. We can eat what we like, just less of it. We don't need special vitamins because our absorbtion rate is still the same. I believe you get enough vitamins in fruit and veggies and supplements are a waste of money. Regards At 02:20 AM 23/12/98 EST, you wrote: >From: JAhroni@... > >Thanks for the offer to send me the videotape. I live in Seattle, Washington, >USA but I don't think I need to see the whole thing. Your report will >suffice. > >To correct a misunderstanding. Tina, the American band will actually hold 40 >cc before ir ruptures. I understand the average is between 4 to 7 cc in the >band--depends on how it was installed. > >In Seattle the first adjustment is after 1 month (not 3). The band has to >sclerose (scar tissue forms around it) to help hold it in place although my >Mexican surgeon says he pins them down really well with sutures and has never >had one slip. I would agree your surgeon is cautious. However, it took us a >long time to get fat and we have to be patient. Years from now it won't >matter if it took 8 or 12 months to lose. > >I had my surgery 10/2/98 and have only lost 27 lbs. But the band was wide >open for the first month--and not very closed for the second month. I have >had 3 adjustments and now have about 4.5 cc in the band. My goal is to lose 1 >or 2 l bs. a week but I understand there maybe some plateaus. > >I don't see as much about protein on this mail list as I do on other weight >loss surgery lists. Do people feel this is absolutely necessary ? I find the >protein drinks gross and try to eat lots of protein foods instead. So far no >unusual hair loss. I had lots of hair loss when I was on a very low calorie >high protein diet (all liquid shakes) a couple years ago so I am personally >not convinced that drinking that stuff will save my hair. Besides I hear it >all grows back when the weight stabilizes. What do others think? What have >you been told? > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 am and all. I'm also taking the neuromins, as of Saturday. Hoping, hoping, hoping.........! ne, 59, Lawrenceville, NJ --- am Jannah mjannah@...> wrote: > > > To Nat Dean, > You asked about the DHA neuromins.............. I > think only I and one > other person are taking them right now. I can buy > them locally at a > health food store (Nature's Way brand, 60 softgels > of 100 mg each.), or > send for them from Puritan's Pride, 1233 > Montauk Highway,PO BOx 9001, Oakdale, NY, > 11769-9001. At our local > health food store the price is $19.90/bottle of 60. > Through Puritan's > Pride, the price is $29.95 for that same > 60!!!!!!!!!!! BUT, if you buy > one bottle, you get one free; buy two bottles get > three free. So it's a > better deal. > > I wish you good luck with them. Hope they help you > as much as they have > me. > > am, AZ > > ___________________________________________________________________ > You don't need to buy Internet access to use free > Internet e-mail. > Get completely free e-mail from Juno at > http://www.juno.com/getjuno.html > or call Juno at (800) 654-JUNO [654-5866] > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > This forum is for support only. The information > posted to this List is for support purposes > and is not intended to replace the examination, > diagnosis and treatment of a licensed > physician and no such claims are inferred. > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 am and all. I'm also taking the neuromins, as of Saturday. Hoping, hoping, hoping.........! ne, 59, Lawrenceville, NJ --- am Jannah mjannah@...> wrote: > > > To Nat Dean, > You asked about the DHA neuromins.............. I > think only I and one > other person are taking them right now. I can buy > them locally at a > health food store (Nature's Way brand, 60 softgels > of 100 mg each.), or > send for them from Puritan's Pride, 1233 > Montauk Highway,PO BOx 9001, Oakdale, NY, > 11769-9001. At our local > health food store the price is $19.90/bottle of 60. > Through Puritan's > Pride, the price is $29.95 for that same > 60!!!!!!!!!!! BUT, if you buy > one bottle, you get one free; buy two bottles get > three free. So it's a > better deal. > > I wish you good luck with them. Hope they help you > as much as they have > me. > > am, AZ > > ___________________________________________________________________ > You don't need to buy Internet access to use free > Internet e-mail. > Get completely free e-mail from Juno at > http://www.juno.com/getjuno.html > or call Juno at (800) 654-JUNO [654-5866] > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > This forum is for support only. The information > posted to this List is for support purposes > and is not intended to replace the examination, > diagnosis and treatment of a licensed > physician and no such claims are inferred. > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
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