Guest guest Posted June 16, 1998 Report Share Posted June 16, 1998 Hi My names and Zachary is my 5 year old son His primary diagnosis is spastic quad cp but he has 15 others. The ones that relate to this list are he has Achalasia and GERD He has severe dysmotility of his esophagus and stomach therefore he has a g and a j tube and is fed through his jtube He is on Peptamen Jr and we have tried every formula imaginable So far this one has been ok Neocate tore his insides up Zach has had 7 nissens done and was scheduled for his 8th just yesterday but we canceled it due to he became unobstructed somehow for he obstructs so easily We started out with a gtube and then went to a gj then a straight j now we have a separate g and j tube and are going to be doing a roux en y jejunostomy soon He refluxes like theres no tomorrow and continuously breaks apart his wraps from severe retching and gagging His esophagus does not work at all and he has had surgery to open up his sphincter but it did not help at all He has 23 surgeries in the past two years I joined this list in hopes to see what everyone else had to say and your ideas I belong to 5 other groups and have learned so much from everyone and vise versa TTFN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1998 Report Share Posted June 16, 1998 List, I'd like to invite everyone to visit a couple of web sites. I have used alternative treatments to eliminate allergies with my child.. using a nonconventional Chinese method. It's working wonderfully, not only for my son.. but many, many others. http://www.allergy2000.com or http://www.naet.com Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1998 Report Share Posted June 17, 1998 The small pump we have used is called the EnteraLite pump. It is wonderful and is small. It fits in a little back pack and very easy to use. We get ours from a supplier in Salt Lake City. We had a Kangaroo for awhile and I am so glad we don't have it anymore. I highly recommend the Enteralite. Amy (mom to 7yr old girl, 3yr old son, eosinophilic esophagitis,nissen, gtube, food allergies) drawe@... ---------- > > > In a message dated 6/16/98, 10:20:26 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: > < his Kangaroo pump around with him for many hours each day>> > > used to be tube fed. He also had a Kangoroo pump that was heavy and > cumbersome. I thought there was a pump that could be worn in a back pack. > Amy if you read this maybe you could give some input. > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1998 Report Share Posted June 17, 1998 In a message dated 6/16/98, 10:20:26 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > used to be tube fed. He also had a Kangoroo pump that was heavy and cumbersome. I thought there was a pump that could be worn in a back pack. Amy if you read this maybe you could give some input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1998 Report Share Posted June 17, 1998 I too second that motion. Weve had our Zevex for over a year now and I wouldnt trade it for any other pump unless something even better came out. Zach is on continuous feeds 24/7 and so we live by that pump. TTFN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1998 Report Share Posted June 17, 1998 Yes Zach is latex allergic due to all of the surgeries and run ins with those latex tubes. We watch out for everything with latex. Thanks for asking. TTFN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1998 Report Share Posted June 18, 1998 I second Amy's recommendation for the enteralite pump. Its been wonderful. Although my son is still only 16 lbs and can't use it as a back pack. He can though lately with maybe one oz of food left. The smallest back pack they have is about as tall as he is. ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: hello everyone > Date: Wednesday, June 17, 1998 8:36 AM > > > > The small pump we have used is called the EnteraLite pump. It is wonderful > and is small. It fits in a little back pack and very easy to use. We get > ours from a supplier in Salt Lake City. We had a Kangaroo for awhile and I > am so glad we don't have it anymore. I highly recommend the Enteralite. > > Amy (mom to 7yr old girl, 3yr old son, eosinophilic esophagitis,nissen, > gtube, food allergies) > drawe@... > > ---------- > > > > > > In a message dated 6/16/98, 10:20:26 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com > writes: > > < > his Kangaroo pump around with him for many hours each day>> > > > > used to be tube fed. He also had a Kangoroo pump that was heavy > and > > cumbersome. I thought there was a pump that could be worn in a back pack. > > Amy if you read this maybe you could give some input. > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1998 Report Share Posted June 18, 1998 We have the Kangaroo Pet and I HATE it. It alarms every time Kody jumps up and down and he says it is " too big and heaby mom " We are fighting to get the Zevex but so far our insurance says no. Doctor wrote a note and everything. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Hi Ana and Welcome! I have a son Josh, (9) who just finished his last stage of ear reconstruction with Dr. Brent (www.earsurgery.com). What was Dr. Thorne's reasoning behind waiting until Andres is 10? I just read last night, in Dr. Brent's paper on ear reconstruction, that if the "normal" ear is large, then he suggests to waitl to make sure there is a large enough section of cartiledge for harvesting. Other than that, I don't understand. Josh was 8 1/2 when he started the reconstruction and he could have started as early as 5. Where do you live? Perhaps you can check out Dr. Brent's sight to see if that is an option you would like to pursue. Hope this helps! Glad to have you on-board! Love, beth >From: Ana Jim >Reply-To: AtresiaMicrotia >To: atresiamicrotia >Subject: Hello everyone >Date: Fri, 8 Mar 2002 21:00:20 -0800 (PST) > > >Hi, every one , I am new to the group , I joined two weeks ago. I was fortunate to had met Jean and her family and they refered me to the group. My son is five and his name is Andres, he was born with atresia microtia on his right ear. Today we went to see Dr. Thorne, but the doctor disincourage us of having any plastic surgery done until he is ten. I thought he started doing the procedures starting the age of six. My problem is that i am worried that the older he gets the more it will scar him mentally. Has any on done the durgery with Dr. Thorne earlier then ten? What where the results? Please any advice any one can give me of what should i do next, or who should i see? > >Thanks in advance. ANA > > > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Hi Ana Just thought I'd let you know my son Conor (only 8 months old) was born with unilateral microtia & atresia to his right ear also. The ENT here in Ireland has also told us that Conor cannot have surgery until he is about 10 years old. They only do the rib cartlidge method here. We were told that they prefer to wait until this age because they get much better results as there is more rib cartlidge for them to use and by that age the ears are almost fully grown to their final size so they can judge the size better too. They seem to think that surgery before this age does not have the same success rate. I'm a little confused about this as in other countries they seem to do surgery at a younger age with good results. Like you, I worry about teasing and if having to wait this long will cause him any mental & emotional problems. Take Care Leigh AtresiaMicrotia wrote: < < --0-367039342-1015650020=:32359 < Content-Type: text/plain; charset=us-ascii < < < Hi, every one , I am new to the group , I joined two weeks ago. I was fortunate to had met Jean and her family and they refered me to the group. My son is five and his name is Andres, he was born with atresia microtia on his right ear. Today we went to see Dr. Thorne, but the doctor disincourage us of having any plastic surgery done until he is ten. I thought he started doing the procedures starting the age of six. My problem is that i am worried that the older he gets the more it will scar him mentally. Has any on done the durgery with Dr. Thorne earlier then ten? What where the results? Please any advice any one can give me of what should i do next, or who should i see? < < Thanks in advance. ANA < < < < --------------------------------- < Quote Link to comment Share on other sites More sharing options...
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