Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 In a message dated 7/21/99, 1:28:07 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > had his tube put in on his second birthday. We went to the hospital and the nurses walked us through it. We were shown how to measure and mark the proper length. You then put it up the nose and with the proper angle it will go down into the stomach. If the angle is wrong you will know immediately because it wil head for the lung and cause coughing. It is very simple to pull out and start over if this happens. Easy for me to say, I doubt would have agreed. We were then shown how to extract stomach content through the tube to check the PH for proper placement and how to flush the tube. The nurses did not do any of this but gave us great support in showing us how to do it ourselves. The tube was then secured to his face and behind the ear with tape. A nurse came to our house the next day and set up the pump and taught us how to use it. Putting the tube in was very uncomfortable for but I don't believe he was in any pain. Once the tube was in he hardly even noticed it. I was lucky that at his age he never attempted to pull it out. His first tube was actually in for about 5 weeks straight before we put a new tube in. Please note that older kids can help get the tube to go down easier by drinking something while the tube is going in, this helps them to basically swallow the tube causing less discomfort and gagging (or so the nurses say). Regarding school. I am not sure of your situation but went back to daycare two days after the tube was put in. We went about our lives normally. The tube did not affect his ability to do anything. You may be able to work something so he can attend school. I was anmazed how well the other kids accepted it. In general I found kids curoius but considerate about the tube. It was the adults (strangers and one friend (former)) who were rude about it. Our insurance did cover this 100%. Finally, the worst part of all this for was having his tape changed. At first I did it daily but then as I learned better ways to secure the tube and found better tapes I was able to go days with the same tape. Jen ( 11/7/95, EE, food allergies, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Hi , I placed the Ng tube in Spencer for about 6 months. He was 4 months to 10 months during this time. It is absolutely horrible to have to place one in. I had to do it by myself because he would pull his out about 3 times a day.....sleeping or just annoyed with it. Being that your son is quite a bit older than Spencer (2 1/2 now) I am sure once it is in he will not pull it out. But it feels like you have something stuck in your throat and you gag easily. Probably better than him drinking the elemental formula, they are discusting to taste. What elemental formula? I would suggest Neocate 1+ or Pediatric Vivonex.....those are both hypo-allergenic and easy to digest and for up to ages 10 years old. Any other questions just ask away. Love, [eosinophilic gastroenteritis] ng tube placment? From: garyarm@... Hi, My son may be trying the elemental diet to either rule in/out food allergies. He has EE, and has failed to respond to traditional anti-reflux meds, and has had 2 normal ph probes. He does not have any food allergy symptoms, and has tested negative on two sets of skin tests, as well as rast testing. We also tried taking him off all dairy products and anything that contains elements of dairy protein and then re-scoped/biopsied. He still had a severe esophagus. We are not sure what to do next and may are considering the elemental diet. is 7 years old. He would be on the diet for 6 weeks. I imagine this will be very difficult for him to see the rest of the family eating. How is the tube placed? Is it painful? Does most insurance cover the elemental diet? This would mean would miss the first few weeks of school (2nd grade). This situation is no good, but at least we could finally rule in/out food allergies. Thanks, --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Your son sysmptoms sound very much like my son's. What foods did you rast test him for? My son is allergic to peanut protein. Sferrazza garyarm@... wrote: > From: garyarm@... > > Hi, My son may be trying the elemental diet > to either rule in/out food allergies. He has > EE, and has failed to respond to traditional anti-reflux > meds, and has had 2 normal ph probes. He does not > have any food allergy symptoms, and has tested negative > on two sets of skin tests, as well as rast testing. > We also tried taking him off all dairy products and > anything that contains elements of dairy protein and > then re-scoped/biopsied. He still had a severe esophagus. > > We are not sure what to do next and may are considering > the elemental diet. is 7 years old. He would > be on the diet for 6 weeks. I imagine this will be > very difficult for him to see the rest of the family > eating. > > How is the tube placed? Is it painful? > Does most insurance cover the elemental diet? > > This would mean would miss the first few weeks > of school (2nd grade). This situation is no good, but > at least we could finally rule in/out food allergies. > > Thanks, > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 , My third son is 7 and we had to put him through the elemental diet via NG tube the beginning of this year. BEFORE we put him through that (to say it was hell would be an UNDERSTATEMENT), we tried steroids AND Flonase. Both failed, but they have worked for many, many other kids. You should try both FIRST before you torture him with an elemental diet. Flonase has no bad side effects and is an easy, easy thing to try. Systemic steroids do have some side effects, but some kids can be managed with a course of high - dose prednisone, then tapered down to minimal amounts or just given intermittently to control symptoms. Both treatments are easier than a strict elemental diet. The ONLY way we can manage it, is because essentially the entire family doesnt eat. It has been tough and it has been psychologically very difficult. I woulD INSIST on treating him FIRST as above and LAST with the elemental diet. (eos esophagitis/GT, former TPNr) (Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian [eosinophilic gastroenteritis] ng tube placment? From: garyarm@... Hi, My son may be trying the elemental diet to either rule in/out food allergies. He has EE, and has failed to respond to traditional anti-reflux meds, and has had 2 normal ph probes. He does not have any food allergy symptoms, and has tested negative on two sets of skin tests, as well as rast testing. We also tried taking him off all dairy products and anything that contains elements of dairy protein and then re-scoped/biopsied. He still had a severe esophagus. We are not sure what to do next and may are considering the elemental diet. is 7 years old. He would be on the diet for 6 weeks. I imagine this will be very difficult for him to see the rest of the family eating. How is the tube placed? Is it painful? Does most insurance cover the elemental diet? This would mean would miss the first few weeks of school (2nd grade). This situation is no good, but at least we could finally rule in/out food allergies. Thanks, --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Also, on the tube issue, Korey was in 1st grade with his NG tube in. It was really difficult on him but his class was very understanding. He was very embarassed by the whole thing and cringes when he looks back and see the pictures. He played soccer with it in too. He had a very sharp angle inside his nose and placing the tube for him was extremely difficult. Four of us had NGs at the same time, so we were constantly putting them back in. I found it EXTREMELY uncomfortable, never really did get used to it, but it was a necessary evil. Once we were assured that nothing else would work, that we had tried everything and this was IT for us ( and that the elemental diet strictly was working), we quickly scheduled gastrostomy tubes and got rid of the NGs. Now breakfast is served with just : " add water and shake " . We have a very interesting pantry. Attached is a pic we took when the kids were going through the trial. I was taking the picture, or you would see my tube in too. Glad this is over now. I hope you don't have to get to this -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Sorry this is late - BUT not all kids need tubes for an elemental diet as some kids will drink the formulas. Clayton for one does drink it he formula BUT he does have a g-tube because he does not take in enough calories (only drinking 4-8 ounces a day). He has been on Neocate and Vivonex pediatric (this he would not drink) and is currently on Elecare by Ross. Also just because your child has an ng tube does not mean he needs to miss school. Love, Sharon mommy to Jake (6)(ADHD and too smart for his own good) and fraternal twins (3/30/97) - Cole -(nda and cute as a button) and Clayton (mitochondrial disorder (presumed to be complex I), eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors, etc........., and the world's best smile - AND WHO IS NOW STARTING TO LOOK CHUBBY!!!!!!!!!!!!!!) Quote Link to comment Share on other sites More sharing options...
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