Guest guest Posted June 22, 1998 Report Share Posted June 22, 1998 Looks like we will be going down to KKI (Kennedy Kreiger Institute) for a feeding evaluation. We saw dr. kelly and Clayton has lost the pound that he gained an is continuing to gag, retch and cough. He does not want to eat. We are looking at tube feeding at the moment (probably n-g feedings at night with a pump) and there is a good possibility that he will need the reflux surgery - we should be having the ph probe on thrusday - but this will depend on when we go to KKI. He is now in less that the 10% for both height and weight when he had been going towards the 25-50% in weight. Sorry to be such a downer but I am very stressed and frustrated as to why my kids will not eat or drink. The docs says that optimally he should take in 32 ounces a day and minimally 24 ounces we are now at 10-2 ounces. I will keep trying but I am so tired an stressed that sometimes I wonder whether a tube would be better for the short term. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1998 Report Share Posted June 22, 1998 Hi Sharon, Sorry you are going thru such a hard time! Just wanted to let you know that tube feeding is not the end of the world and a ng tube is not permanent in any way. No surgery to insert, no scars. It scared me a lot when it first happened to but we soon got used to it and what helped a lot was that our insurance paid for a nurse to come out and help for 8-16 hours a week because he was dependent upon a machine. You might want to check this out with your insurance. kept his ng tube for 4 months and it was incredible the difference it made in him. He gained a lot of weight and had a lot more energy. Keep your chin up! Dawn ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Clayton Update > Date: Monday, June 22, 1998 1:04 PM > > > > Looks like we will be going down to KKI (Kennedy Kreiger Institute) for a > feeding evaluation. We saw dr. kelly and Clayton has lost the pound that he > gained an is continuing to gag, retch and cough. He does not want to eat. We > are looking at tube feeding at the moment (probably n-g feedings at night with > a pump) and there is a good possibility that he will need the reflux surgery - > we should be having the ph probe on thrusday - but this will depend on when we > go to KKI. He is now in less that the 10% for both height and weight when he > had been going towards the 25-50% in weight. Sorry to be such a downer but I > am very stressed and frustrated as to why my kids will not eat or drink. The > docs says that optimally he should take in 32 ounces a day and minimally 24 > ounces we are now at 10-2 ounces. I will keep trying but I am so tired an > stressed that sometimes I wonder whether a tube would be better for the short > term. > > Love, > Sharon > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1998 Report Share Posted June 22, 1998 In a message dated 98-06-22 14:47:29 EDT, you write: << I will keep trying but I am so tired an stressed that sometimes I wonder whether a tube would be better for the short term. >> Hi Sharon, Is Dr. pushing for the tube. I know this is a very scary thing to do. I put off the feeding tube with for as long as I could because of the fear. I won't say that it is the easiest thing to do but I was amazed at how well we adjusted to it as a family. Like Dawn said, the ng tube is not permanent and does not require surgery. had fallen off the growth charts by the time we put the tube in. Keep in mind, he had been born off the top of the chart. gained weight and grew in height while on the tube. He only vomitted 2 or 3 times while on the tube. He stayed in daycare and played like any other normal healthy kid. I was glad when the tube came out but I do not regret doing it in any way. The feeding tube was tough at times but was a solid step for us in the right direction. Please keep in mind that I am not far away. If you need someone to talk to or if you need any help please do not hesitate to call me. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1998 Report Share Posted June 22, 1998 In a message dated 98-06-22 17:36:43 EDT, you write: << Keep your chin up! >> Hi Dawn: Thanks for the kind words. I know a n-g tube is not permanent but it is the thought of it that bothers me. Why would a kid not want to eat. Sharon Quote Link to comment Share on other sites More sharing options...
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