How much does your child weigh?

[TonyaH]

Hi there,

I have an eight year old son who weighs 44 pounds and is in the 10th percentile for weight. I have tried every trick in the book to increase his calorie intake, using suggestions from this board, our clinic, cookbooks.... He eats constantly and consumes approximately 2000 calories a day. The problem is that our clinic wants to see more weight gain, understandably, and has mentioned Gtube if we can't boost his weight ourselves. I hate to make Andrew go through this when he really does eat well..he's a real trooper! Do all parents go through the GTube scare from their clinic because docs always want more weight? Is this just a "scare tactic" for lack of better term? How much do your children weigh and is your clinic talking about a GTube? We love our clinic and know we are in excellent hands, but every three months I fear they are going to say it's time. Thanks in advance!

 

[TonyaH]

Hi there,

I have an eight year old son who weighs 44 pounds and is in the 10th percentile for weight. I have tried every trick in the book to increase his calorie intake, using suggestions from this board, our clinic, cookbooks.... He eats constantly and consumes approximately 2000 calories a day. The problem is that our clinic wants to see more weight gain, understandably, and has mentioned Gtube if we can't boost his weight ourselves. I hate to make Andrew go through this when he really does eat well..he's a real trooper! Do all parents go through the GTube scare from their clinic because docs always want more weight? Is this just a "scare tactic" for lack of better term? How much do your children weigh and is your clinic talking about a GTube? We love our clinic and know we are in excellent hands, but every three months I fear they are going to say it's time. Thanks in advance!

 

[anonymous]

Hi Tonya,

I can understand your frustration. Eating and gaining weight have always been our biggest issues. At our last clinic visit, my son dropped a few lbs. and went from the 50% to below the 25%. Luckily, he's gained it back plus some and weighs 43-44 lbs. We struggled with the G-Tube decision and decided to not ever rule it out. I have some friends that have been so glad they did it. According to them, it has taken a lot of pressure off them and their CF child during mealtimes and really boosted their child's weight (which can do so much for their lung function too!). I never felt like my clinic used the G-tube as a scare tactic, but as another option because our approach at home was not working. I'd encourage you to talk to more parents and not rule it out. Hang in there and good luck.

By the way, we've put weight on my son by adding an extra can of "Boost Plus" as a snack during the day (he also gets one before bed time). We'll also always try and fit in something fattening/high in calories for his afternoon snack - a candy bar, chips, etc. etc. This and really power-packing all of his meals seems to help for the time being, but it's always a struggle - I can relate with you!! Keep us posted.

Carey

 

[anonymous]

Hi Tonya,

I can understand your frustration. Eating and gaining weight have always been our biggest issues. At our last clinic visit, my son dropped a few lbs. and went from the 50% to below the 25%. Luckily, he's gained it back plus some and weighs 43-44 lbs. We struggled with the G-Tube decision and decided to not ever rule it out. I have some friends that have been so glad they did it. According to them, it has taken a lot of pressure off them and their CF child during mealtimes and really boosted their child's weight (which can do so much for their lung function too!). I never felt like my clinic used the G-tube as a scare tactic, but as another option because our approach at home was not working. I'd encourage you to talk to more parents and not rule it out. Hang in there and good luck.

By the way, we've put weight on my son by adding an extra can of "Boost Plus" as a snack during the day (he also gets one before bed time). We'll also always try and fit in something fattening/high in calories for his afternoon snack - a candy bar, chips, etc. etc. This and really power-packing all of his meals seems to help for the time being, but it's always a struggle - I can relate with you!! Keep us posted.

Carey

 

[skh]

Hi Tonya, when my daughter was diagnosed with CF she weighed 60 lbs. and was 11 yrs old. Now three yrs. later she weighs 101 lbs. and has grown in height also. I know taking enzymes was a blessing to her but we also don't discourage her from eating whatever she wants. She loves malts/shakes and pretzels. She has a shake/malt almost daily and she eats a bag of pretzels every other day! She has always had a healthy appetite but like I said she didn't start gaining until she started taking enzymes and prior to knowing that she had CF I don't think I was as willing to buy her a malt every day! I think exercise has been very helpful for her also. She has a Dance, Dance, Revolution game that goes with our Playstation II. She will do this with her friends just for fun but it is such good exercise for her also.

Good Luck on the weight gain!

Sue

 

[skh]

Hi Tonya, when my daughter was diagnosed with CF she weighed 60 lbs. and was 11 yrs old. Now three yrs. later she weighs 101 lbs. and has grown in height also. I know taking enzymes was a blessing to her but we also don't discourage her from eating whatever she wants. She loves malts/shakes and pretzels. She has a shake/malt almost daily and she eats a bag of pretzels every other day! She has always had a healthy appetite but like I said she didn't start gaining until she started taking enzymes and prior to knowing that she had CF I don't think I was as willing to buy her a malt every day! I think exercise has been very helpful for her also. She has a Dance, Dance, Revolution game that goes with our Playstation II. She will do this with her friends just for fun but it is such good exercise for her also.

Good Luck on the weight gain!

Sue

 

[anonymous]

IF you can ask the Center to hold off on this procedure for one month. This is my suggestion. I would continue feeding him whatever he is eating but give him more protein througout the day. When he is able to exercise, i would give him a normal meal then add in some extra good quality carbohydrates and take him for a long walk or let him start lifting light weights. In a few weeks he will probably gain some more weight. Did you ever think about changing his enzymes or increasing them if he is not digesting them well? Is he growing in height? If he is not gaining weight and growing in height that could be a concern but that is good because he is digesting his food well enough that he is growing tall. I wish you the best but like you, I would give it some more time. I would also maybe increase his chest pt a few times per week to clear him out so he will not be coughing as much throughout the day allowing him not to burn extra calories.

Try not some nut butters in small doses like cashew or peanut butters. add some bread and light jelly as a snack. After he eats a meal and he appears full tell him to take a break when he eats then come back five to ten minutes later and he will be able to finish his meal or perhaps create enough appetite to eat more.

Risa

 

[anonymous]

IF you can ask the Center to hold off on this procedure for one month. This is my suggestion. I would continue feeding him whatever he is eating but give him more protein througout the day. When he is able to exercise, i would give him a normal meal then add in some extra good quality carbohydrates and take him for a long walk or let him start lifting light weights. In a few weeks he will probably gain some more weight. Did you ever think about changing his enzymes or increasing them if he is not digesting them well? Is he growing in height? If he is not gaining weight and growing in height that could be a concern but that is good because he is digesting his food well enough that he is growing tall. I wish you the best but like you, I would give it some more time. I would also maybe increase his chest pt a few times per week to clear him out so he will not be coughing as much throughout the day allowing him not to burn extra calories.

Try not some nut butters in small doses like cashew or peanut butters. add some bread and light jelly as a snack. After he eats a meal and he appears full tell him to take a break when he eats then come back five to ten minutes later and he will be able to finish his meal or perhaps create enough appetite to eat more.

Risa

 

[anonymous]

Reece weighs 30 lbs, he has been this for at least 1 1/2yrs. He is 3 1/2. Our clinic said that the growth charts have changed, so that put him in the 9th % for weight and a little over 50% for height (he is 38 in. tall) They are really buckling down on the weight issue here, giving out samples of scandishakes etc. They have not yet talked about a G tube though. (whew) I too have tried everythingin the book.....nothing worked for us yet, still crossing my fingers that Reece will start eating. Leah mommy 2 Reece 3 w/ CF

 

[anonymous]

Reece weighs 30 lbs, he has been this for at least 1 1/2yrs. He is 3 1/2. Our clinic said that the growth charts have changed, so that put him in the 9th % for weight and a little over 50% for height (he is 38 in. tall) They are really buckling down on the weight issue here, giving out samples of scandishakes etc. They have not yet talked about a G tube though. (whew) I too have tried everythingin the book.....nothing worked for us yet, still crossing my fingers that Reece will start eating. Leah mommy 2 Reece 3 w/ CF

 

[wuffles]

I'm 21 and have only JUST stopped being bugged by doctors about gaining weight, after finally making it to the lower end of a "normal" BMI - woohoo! I have always been very high on the height charts and very low on the weight charts. Despite all the nagging over the years, I don't ever remember being recommended a G-Tube - if I was, my parents must have said no. Luckily, I am at a stable weight now without it. In saying that, I have heard a lot of good and bad stories about G-Tubes and it's really a matter of weighing up the pros and cons.

 

[wuffles]

I'm 21 and have only JUST stopped being bugged by doctors about gaining weight, after finally making it to the lower end of a "normal" BMI - woohoo! I have always been very high on the height charts and very low on the weight charts. Despite all the nagging over the years, I don't ever remember being recommended a G-Tube - if I was, my parents must have said no. Luckily, I am at a stable weight now without it. In saying that, I have heard a lot of good and bad stories about G-Tubes and it's really a matter of weighing up the pros and cons.

 

[Haileysmommy]

Hailey is out of the norm. She is almost 27 lbs(over the 100%) and in the 95th for height. Her pancreatic function is really low. The dr's are amazed at what her blood tests say because her weight dosen't match.
She eats everything we eat(she does sneak some dog food when I am not looking). She eats a ton of fruits and veggies. She was down on her weight one month and i just smothered everything in butter and cheese and she fattend back up.
Sorry i am not much help

 

[Haileysmommy]

Hailey is out of the norm. She is almost 27 lbs(over the 100%) and in the 95th for height. Her pancreatic function is really low. The dr's are amazed at what her blood tests say because her weight dosen't match.
She eats everything we eat(she does sneak some dog food when I am not looking). She eats a ton of fruits and veggies. She was down on her weight one month and i just smothered everything in butter and cheese and she fattend back up.
Sorry i am not much help

 

[debs2girls]

Carey, your son is five right?

 

[debs2girls]

Carey, your son is five right?

 

[anonymous]

My daughter has always had difficulty gaining weight. We were never threatened with a g-tube, but the doctor discussed it with us as an option. We ended up having g-tube placed after doctor suggested a test called a calorie card study. This test involves laying in a bubble and sleeping while a monitor determines how many calories your body is consuming at rest. The study showed that my daughter needed 3400 calories a day just to maintain her weight without throwing in fighting off infections, etc. That amount of calories would be impossible for a 7 year old to consume daily just to maintain weight so we had g-tube placed. She is now 12 and weighs 80 lbs. and we continue to have struggles with weight, but atleast the g-tube is there when she gets sick and does not have the energy to eat. It has also taken alot of weight off her shoulders because she is not constantly getting hounded to eat.

 

[anonymous]

My daughter has always had difficulty gaining weight. We were never threatened with a g-tube, but the doctor discussed it with us as an option. We ended up having g-tube placed after doctor suggested a test called a calorie card study. This test involves laying in a bubble and sleeping while a monitor determines how many calories your body is consuming at rest. The study showed that my daughter needed 3400 calories a day just to maintain her weight without throwing in fighting off infections, etc. That amount of calories would be impossible for a 7 year old to consume daily just to maintain weight so we had g-tube placed. She is now 12 and weighs 80 lbs. and we continue to have struggles with weight, but atleast the g-tube is there when she gets sick and does not have the energy to eat. It has also taken alot of weight off her shoulders because she is not constantly getting hounded to eat.

 

[TonyaH]

Thank you for all of the suggestions. I know our clinic doesn't mean to "scare" us about a gtube but I guess I take it that way sometimes because we try so hard to have more of a weight gain every three months and every visit we hear,"More weight or a feeding tube" from our dietician. Andrew has been very healthy so far and all of his meds are very non-invasive so I am trying to ward off any major changes right now. He is also at that odd age, 8, when he is starting to ask questions about CF and I am trying to downplay things so he can understand that yes, he has a disease but no, it does not define him. Maybe I should just openly ask the clinic if there is a line drawn, a particular weight or growth chart percentage, when a feeding tube would be placed. Maybe then I won't be scared each time we go to clinic that this is the visit when they will say "it's time". Anyway, we go back on Wednesday so I'll keep my fingers crossed that we have made some progress on their scales.

 

[TonyaH]

Thank you for all of the suggestions. I know our clinic doesn't mean to "scare" us about a gtube but I guess I take it that way sometimes because we try so hard to have more of a weight gain every three months and every visit we hear,"More weight or a feeding tube" from our dietician. Andrew has been very healthy so far and all of his meds are very non-invasive so I am trying to ward off any major changes right now. He is also at that odd age, 8, when he is starting to ask questions about CF and I am trying to downplay things so he can understand that yes, he has a disease but no, it does not define him. Maybe I should just openly ask the clinic if there is a line drawn, a particular weight or growth chart percentage, when a feeding tube would be placed. Maybe then I won't be scared each time we go to clinic that this is the visit when they will say "it's time". Anyway, we go back on Wednesday so I'll keep my fingers crossed that we have made some progress on their scales.