Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Welcome back! Although I can't offer you any words of advice, hopefully others on the list serve can. If no one else can, email me back at MagicRSS@.... I can check our RSS networking database for parents of G-tube or prior G-tube children. Salem RSS-Support wrote: > Wow....LONG time no talk!! I was one of the original members back > when onelist first started and haven't been here for a couple of > years I think. > > I see things have changed a little and see lots of new names, however, > it's nice to see some familiar names again. > > My son, , has RSS and is now 4 1/2 years old. He has a g-tube > and my question is for those that have crossed over from g-tube > feedings to oral eating. I think we may " try " on strictly oral > feedings, but wondered how others went about this transition. I am > worried about not eating and losing weight...which we all HATE > to happen. almost seems worried about getting rid of his > " button " . He's so used to it and I can tell its almost like a safety > feeling for him. Your words of wisdom and advice would be greatly > appreciated. We have great doctors, but talking with other families > is where I learn the most. > > Nice to be back and hope you all are doing well........ > > Stacie > Mom to daughter, (8 yrs.) and son, (4 yrs.) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi, I just have a couple of questions for you. How well does he eat now? Do you use it at night for nighttime feedings? Does he have hypoglycemia or does he ever spill ketones? Judy Mom to (almost 6) g-tube G-Tube Transition > Wow....LONG time no talk!! I was one of the original members back > when onelist first started and haven't been here for a couple of > years I think. > > I see things have changed a little and see lots of new names, however, > it's nice to see some familiar names again. > > My son, , has RSS and is now 4 1/2 years old. He has a g-tube > and my question is for those that have crossed over from g-tube > feedings to oral eating. I think we may " try " on strictly oral > feedings, but wondered how others went about this transition. I am > worried about not eating and losing weight...which we all HATE > to happen. almost seems worried about getting rid of his > " button " . He's so used to it and I can tell its almost like a safety > feeling for him. Your words of wisdom and advice would be greatly > appreciated. We have great doctors, but talking with other families > is where I learn the most. > > Nice to be back and hope you all are doing well........ > > Stacie > Mom to daughter, (8 yrs.) and son, (4 yrs.) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi Stacey, Glad to hear from you again. It has been a while. Glad to see you have enough power in Calif. to turn on your computer. First, let me say -- GO RED SOX !!! How are thngs with you and and ? I loved your last pictures. Where were they taken? I am very glad to hear that you considering removing the feeding tube. When I was there for a visit, would not eat anything. So to go from that to now in a little over a year is fantastic. Since doesn't have a feeding tube I can offer any specific advice. I know a while ago that Max, Jodi's son had his feeding tube removed and he went through some seperation anxiety about it. So, you might want to start talking to about what it will be like to not have a feeding tube. I wish I could be more help. I think the best person to ask is Jodi. Please keep us posted. Ken M > Wow....LONG time no talk!! I was one of the original members back > when onelist first started and haven't been here for a couple of > years I think. > > I see things have changed a little and see lots of new names, however, > it's nice to see some familiar names again. > > My son, , has RSS and is now 4 1/2 years old. He has a g-tube > and my question is for those that have crossed over from g-tube > feedings to oral eating. I think we may " try " on strictly oral > feedings, but wondered how others went about this transition. I am > worried about not eating and losing weight...which we all HATE > to happen. almost seems worried about getting rid of his > " button " . He's so used to it and I can tell its almost like a safety > feeling for him. Your words of wisdom and advice would be greatly > appreciated. We have great doctors, but talking with other families > is where I learn the most. > > Nice to be back and hope you all are doing well........ > > Stacie > Mom to daughter, (8 yrs.) and son, (4 yrs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 stay calm,sleep when you can. Dale here,my son has a g-tube10 he will be eleven on tuesday July17 his email for wishes is (Cozmo1215@...) Summer issue g-tube story. I did not catch the age of your child- You will breathe easier. Your child will be fed by you,maybe not at the dinner table like others but it works. Individual ,my older sister reminds me we are not alike that is what makes us indivduals.(SPECIAL) Each and everyone of us. Hopefully you are coming to the convention. See you there, Bob & Dale (mother to 16,then 11) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi Stacie, I know nothing about G tubes.....however I was interested to read that your therapists are keen to cut out a bolus feed and see if ryan will then be hungry enougth to eat.... Finlay (19mths - ng tube - ?RSS - ?GSD - 16lbs) who has never had much of an appetite was in hospital a few weeks ago for a fasting study - at the end of 12 hours of no food - he was only mildly interested in eating orally. What we learned from that was that when it does come time to wean him from the ng tube - having him miss a few feeds would not be the way to go!!! We have had success with periactin though - I can't remember reading if is on that or not??? > > Judy: > > Thanks for your email response! Here's the info. on 's > feedings....... > > has bolus feeds four times a day. Starts at 7:30 a.m., noon, > 4:00 p.m., and 7:30 p.m.. All feeds are about 9 ounces each. > > does have an interest in eating orally, but it is very slow and > very cautious. He has his favorites such as pizza, corn dogs, french > fries, vanilla ice-cream, cookies, macaroni and cheese, etc.. > > He occasionally wants to try new foods, but he is very cautious about > it and it also has to be on " his " terms. The feeding therapist would > like to " try " and take away a feeding time or two such as lunch and > dinner to see if he would eat enough to gain and/or maintain weight. > I, of course, am scared to death to see him lose weight. Honestly, I > can't imagine him just saying... " okay, okay I'll eat now " . > > I hope you have some words of wisdom to offer and look forward to what > info. you may have. Have you gone through this? > > Talk soon.... > > Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Stacie, It is good to hear from you again. I'm glad that things have been calm enough that you did not need to stay in touch as often. Now that you do need advice, here I am to put in my two cents' worth once again... Ken is correct. Max had a terrible time when we removed Max's button a little over a year ago. No one ever thought that Max could have been emotionally attached to it and we all suffered for it. I am not really sure how to prepare for that day, though. I would assume that talking about it and what it would be like not to have it would be the first step. It's not like he has a blanket that you can begin to limit to only the house, then his room, then only on his bed, etc. As for when to remove it, I agree that you have to wait at least 6 months before you take it out. You MUST make sure that is eating enough, not spilling ketones and that he can handle not having the use of the button when he is sick. Dr. Harbison made us wait almost a year, but that is probably because Max's system is so sensitive and he does tend to spill ketones. We had to make sure that he would eat and drink enough to flush them out. We did not really have a plan for stopping the tube feedings, I have to admit. We just adjusted how much Max got at night according to what he ate or did not eat during the day. Probably I would think that calculating how many calories needs would be the first step. Then I would not skip any bolus feeds, but I would offer food to eat first and then make up the calories after he says he is done. If he is used to 9 ounces, that would probably be the equivalent of about 270 calories/meal, right? Offer him food and if he eats or exceeds that calorie count, then skip the bolus. Eventually he will eat enough at each sitting that you will find that you are not doing the tube feedings at all. When we did this with Max, we would talk about how wonderful it was that he was eating on his own. He did not like being hooked up to the pump, so we talked about how he would not need it if he ate enough. We did not ever, EVER pressure him. As I said, it was a gradual process. I'm sure it took months, not weeks or days. Before we realized it, Max was off the tube feedings altogether and that was that. I hope I have helped you. Please let me know if I can help in any other way. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Welcome back, Stacie! Remember, we met in Monterey when you had your family reunion here. It was so cute when Josh and lifted up their shirts to show each other their G-tubes. At that time, wasn't eating anything orally; he must be doing better if you're considering getting rid of the button! I hope he's growing well, too. still has his button for night feedings, but he's eating MUCH better during the day, thanks mainly to periactin (have you tried that with ?). In the past year, has grown almost 4 inches and gained over 10 pounds! - Joe, father to , age 6.5, 37 pounds, 41 inches Stacie wrote: > Wow....LONG time no talk!! I was one of the original members back > when onelist first started and haven't been here for a couple of > years I think. > > I see things have changed a little and see lots of new names, however, > it's nice to see some familiar names again. > > My son, , has RSS and is now 4 1/2 years old. He has a g-tube > and my question is for those that have crossed over from g-tube > feedings to oral eating. I think we may " try " on strictly oral > feedings, but wondered how others went about this transition. I am > worried about not eating and losing weight...which we all HATE > to happen. almost seems worried about getting rid of his > " button " . He's so used to it and I can tell its almost like a safety > feeling for him. Your words of wisdom and advice would be greatly > appreciated. We have great doctors, but talking with other families > is where I learn the most. > > Nice to be back and hope you all are doing well........ > > Stacie > Mom to daughter, (8 yrs.) and son, (4 yrs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Stacie, is six and eating better orally. I do not see us giving up the feeding pump all together for quite a while yet but in general what we do to try to get her to eat more during the day is give pump directly following a meal. We try not to do during or before. Also drinks Pediasure mixed with Strawberry syrup and this helps keep the calories and nutrition up. If she eats well we skip day time pump feedings. To my friends, Peace and Prayers Mark dad to 6, G-tube Quote Link to comment Share on other sites More sharing options...
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