Answer to questions based on our experience:
1. It does not have any effects on his daily activities
2. His doctor would prefer him to keep it in until he is at least 25 with the hopes that he will just keep it because it is so much easier when a nutrition issue arises. Technically, I believe he could take it out when he turns 21 if he really wants to.
3. He only complains of feeling overfull if he tries to bolus 3 cans all at once, which we don't do or try to do anymore because it isn't effective to do it that way for him.
4. I believe that he began gaining weight within the first couple of months, it was so long ago that its hard to remember.
5. I also don't remember what it did for his PFT's, I am thinking they did go up because he had a 122% baseline at one time. His current is 107%, while we are still hoping to get back to his baseline of 112%, not sure we will make it or not and really can't complain about the 107%. It did take us almost 2 years to get back to the 107% and it seems to only be lasting a couple of weeks as he is going back down again. Reality is that we may have to accept the 98% but we are still not willing to give up, I should say, he isn't ready to give up yet.
I noticed that he is on Creon, when was the last time the changed his enzymes? I would really push for the Pancreacarb MS 8's or 16's, guessing the same age as Nathan it would be the 16's. The change over to these enzymes made a huge difference for Nathan and for my friends duaghters as well. Dr. Accurso believes they are the best enzyme for CF currently. Changing enzymes also helped with weight gain for Nathan.
Getting 5000 calories in a day isn't as hard as I thought after I got some practical advice on how to help him accomplish it. Following is a sample of a day for how he does it:
9:00 AM- Breakfast - 2 Eggo Waffles, 1/2 cup syrup, 2 cups chocolate Milk = 1140 calories; 10:00 am - 1 can chocolate boost plus = 360 calories; 12:00 - 2 cups spaghetti O's, 2 cups chocolate milk = 700 calories; 2:00 - 1 Nestle Crunch bar, 1 can cholcolate booost plus = 580 calories; 5:00 - 1 cup Romain Lettuce, 1/3 cup tomatoes, 2 tbsps. Dorothy Lynch Dressing, 1 cup Chicken Fettuccine, 12 ounces Pepsi= 590 calories; 7:00 - 1 can chocolate boost plus = 360 calories; 10:00 - Hungry Man Boneless Pork; 2 cups chocolate milk = 1270 calories; Total - 5000 calories.
Eating out helps him bump the calories and usually allows him to skip a couple of boosts if he wants. The key for us was to find a supplement like the boost plus that he likes and the hungry man meals to substitute for the nutreen 2.0 that he would bolus at between 9 and 10 pm if he chooses not to eat the hungry man or something with at least a total of 1000 calories.
What made me get the hungry man meals was because we noticed that when he was in the hospital having a tune-up, he would eat another meal around 10 pm because the cafeteria was open 24/7, he had to stay up for his last treatment at midnight, and he was gaining weight eating that 4th late night meal. Needless to say, I was not about to cook another dinner for him at 10:00 at night, so we started looking into TV dinners that he could microwave himself and found that the hungry mans had outrageous amounts of calories and he loves them. There are a lot of TV dinners on the market that pack well over 500 calories a piece, so again, key would be finding some that he likes. I have a freezer so when they go on sale, I stock up, I also go to Sams Club as they have various frozen sandwhiches and stuff that he likes too that are loaded with calories. It might be worth a try while you are waiting on timing for the tube.
Sorry this is so long, I hope it helps,
Patty
1. It does not have any effects on his daily activities
2. His doctor would prefer him to keep it in until he is at least 25 with the hopes that he will just keep it because it is so much easier when a nutrition issue arises. Technically, I believe he could take it out when he turns 21 if he really wants to.
3. He only complains of feeling overfull if he tries to bolus 3 cans all at once, which we don't do or try to do anymore because it isn't effective to do it that way for him.
4. I believe that he began gaining weight within the first couple of months, it was so long ago that its hard to remember.
5. I also don't remember what it did for his PFT's, I am thinking they did go up because he had a 122% baseline at one time. His current is 107%, while we are still hoping to get back to his baseline of 112%, not sure we will make it or not and really can't complain about the 107%. It did take us almost 2 years to get back to the 107% and it seems to only be lasting a couple of weeks as he is going back down again. Reality is that we may have to accept the 98% but we are still not willing to give up, I should say, he isn't ready to give up yet.
I noticed that he is on Creon, when was the last time the changed his enzymes? I would really push for the Pancreacarb MS 8's or 16's, guessing the same age as Nathan it would be the 16's. The change over to these enzymes made a huge difference for Nathan and for my friends duaghters as well. Dr. Accurso believes they are the best enzyme for CF currently. Changing enzymes also helped with weight gain for Nathan.
Getting 5000 calories in a day isn't as hard as I thought after I got some practical advice on how to help him accomplish it. Following is a sample of a day for how he does it:
9:00 AM- Breakfast - 2 Eggo Waffles, 1/2 cup syrup, 2 cups chocolate Milk = 1140 calories; 10:00 am - 1 can chocolate boost plus = 360 calories; 12:00 - 2 cups spaghetti O's, 2 cups chocolate milk = 700 calories; 2:00 - 1 Nestle Crunch bar, 1 can cholcolate booost plus = 580 calories; 5:00 - 1 cup Romain Lettuce, 1/3 cup tomatoes, 2 tbsps. Dorothy Lynch Dressing, 1 cup Chicken Fettuccine, 12 ounces Pepsi= 590 calories; 7:00 - 1 can chocolate boost plus = 360 calories; 10:00 - Hungry Man Boneless Pork; 2 cups chocolate milk = 1270 calories; Total - 5000 calories.
Eating out helps him bump the calories and usually allows him to skip a couple of boosts if he wants. The key for us was to find a supplement like the boost plus that he likes and the hungry man meals to substitute for the nutreen 2.0 that he would bolus at between 9 and 10 pm if he chooses not to eat the hungry man or something with at least a total of 1000 calories.
What made me get the hungry man meals was because we noticed that when he was in the hospital having a tune-up, he would eat another meal around 10 pm because the cafeteria was open 24/7, he had to stay up for his last treatment at midnight, and he was gaining weight eating that 4th late night meal. Needless to say, I was not about to cook another dinner for him at 10:00 at night, so we started looking into TV dinners that he could microwave himself and found that the hungry mans had outrageous amounts of calories and he loves them. There are a lot of TV dinners on the market that pack well over 500 calories a piece, so again, key would be finding some that he likes. I have a freezer so when they go on sale, I stock up, I also go to Sams Club as they have various frozen sandwhiches and stuff that he likes too that are loaded with calories. It might be worth a try while you are waiting on timing for the tube.
Sorry this is so long, I hope it helps,
Patty