Eating struggles

[vmhoward]

We have been going through the same thing with Garran. he just wont eat. It has been 3 months now and we have tried everything. Today we went back to the doctor and finally they are going to place a G-Tube in next week. He had started to gain weight last month which is why they didnt do it last time he was in the hospital but then this visit he lost a pound and 1/2. not good for a 4 year old weighing 34 pounds. Anyway. We have discovered that he will eat if it is "his idea" not ours. If we start eating food then he will eat it. But if its just him he wont do a thing. So in any case. All my kids are pretty thin even tho he is the only Cfer so we go ahead and fatten up all the meals for all of them. It cant hurt them to have a few extra caleries once and a while if it will get him to eat. However it doesnt help Mom and Dad with their diet. But I have found that my kids can practically live on chocolate cupcakes. I have now gained a new name as well from the neighbor child, I am no longer Victoria I am Cupcake.

Anyway. A great way to add calories to cakes and cupcakes is to use heavy whipping cream in the batter about 1/2 cup. it adds alot of calories and it also makes them taste really good. we also add that to his milkshakes and his mashed potatoes and mac and cheese. Although lately the only mashed potatoes I can get him to eat is KFC's.

Right now we are taking it one day at a time, and when he does eat all his food we let him know how proud we are, in the hopes that it will convince him to eat again. Sometimes it works sometimes he just downright refuses. In any case. Best wishes with your little ones and let us know what works for you!

Victoria

 

[vmhoward]

We have been going through the same thing with Garran. he just wont eat. It has been 3 months now and we have tried everything. Today we went back to the doctor and finally they are going to place a G-Tube in next week. He had started to gain weight last month which is why they didnt do it last time he was in the hospital but then this visit he lost a pound and 1/2. not good for a 4 year old weighing 34 pounds. Anyway. We have discovered that he will eat if it is "his idea" not ours. If we start eating food then he will eat it. But if its just him he wont do a thing. So in any case. All my kids are pretty thin even tho he is the only Cfer so we go ahead and fatten up all the meals for all of them. It cant hurt them to have a few extra caleries once and a while if it will get him to eat. However it doesnt help Mom and Dad with their diet. But I have found that my kids can practically live on chocolate cupcakes. I have now gained a new name as well from the neighbor child, I am no longer Victoria I am Cupcake.

Anyway. A great way to add calories to cakes and cupcakes is to use heavy whipping cream in the batter about 1/2 cup. it adds alot of calories and it also makes them taste really good. we also add that to his milkshakes and his mashed potatoes and mac and cheese. Although lately the only mashed potatoes I can get him to eat is KFC's.

Right now we are taking it one day at a time, and when he does eat all his food we let him know how proud we are, in the hopes that it will convince him to eat again. Sometimes it works sometimes he just downright refuses. In any case. Best wishes with your little ones and let us know what works for you!

Victoria

 

[anonymous]

My daughter is 16 years old and has cf. She tells me that she seldom gets hungry and if she forces herself to eat, it only upsets her stomach. As a result, she is only 82 pounds. But on the up side, she is the flyer on her cheerleading squad. She loves to be the highest one on the pyrmid.
When she was younger her doctor put her on a medication called megaze (not sure the spelling), it actually made her hungry and she gained a lot of weight.

Jayne

 

[anonymous]

My daughter is 16 years old and has cf. She tells me that she seldom gets hungry and if she forces herself to eat, it only upsets her stomach. As a result, she is only 82 pounds. But on the up side, she is the flyer on her cheerleading squad. She loves to be the highest one on the pyrmid.
When she was younger her doctor put her on a medication called megaze (not sure the spelling), it actually made her hungry and she gained a lot of weight.

Jayne

 

[anonymous]

I don't know if this is something you may be interested in
but Kennedy Krieger Institute has a pediatric feeding
disorders progam that helps with young children.
My daughter was in the program several years ago
with no luck do to her being six years old, the younger
children did much better with the game playing and rewards
that they would get for eating.

 

[anonymous]

I don't know if this is something you may be interested in
but Kennedy Krieger Institute has a pediatric feeding
disorders progam that helps with young children.
My daughter was in the program several years ago
with no luck do to her being six years old, the younger
children did much better with the game playing and rewards
that they would get for eating.

 

[anonymous]

Tanja,
I have always had a lot of trouble feeding Sophia (4). She has a poor appetite. I was told by one cf doctor that not enough enzymes can cause a poor appetite. It is a daily struggle to feed her. It takes me sitting next to her feeding her for at least 30 minutes at each meal. Not sure when she is going to pick up the fork for herself. She is fine with just not eating. We have had this struggle since she was a few months old and was on a feeding tube due to a milk allergy/vomiting/food refusal. She was on the feeding tube for three months until we realized she had a milk allergy. I have always been so concerned with how much she was eating that I took charge of feeding her. We also have been to a feeding clinic at our children's hospital. It didn't help us. A good book to read is "Child of Mine, Feeding with good Sense and Love" by Ellyn Satter. You can get it on Amazon. It basically says that parents are to provide nutritious meals to kids at appropriate times. Kids then make the choice how much they eat. It makes sense and has helped me tremendously with my second child who also has cf. I knew from the beginning that I was going to let him be in charge of how much food goes into mouth. I was going to treat him like he didn't have cf and it didn't matter if he pushed the plate away and said no. As a result, my second child eats well thankfully.

I think all kids go through what your son is doing. I think your best bet is to read that book I mentioned and try not to let it worry you. Easier said than done, I know. We have clinic next week and I am really anxious about what they are going to say about my daughter's weight.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Tanja,
I have always had a lot of trouble feeding Sophia (4). She has a poor appetite. I was told by one cf doctor that not enough enzymes can cause a poor appetite. It is a daily struggle to feed her. It takes me sitting next to her feeding her for at least 30 minutes at each meal. Not sure when she is going to pick up the fork for herself. She is fine with just not eating. We have had this struggle since she was a few months old and was on a feeding tube due to a milk allergy/vomiting/food refusal. She was on the feeding tube for three months until we realized she had a milk allergy. I have always been so concerned with how much she was eating that I took charge of feeding her. We also have been to a feeding clinic at our children's hospital. It didn't help us. A good book to read is "Child of Mine, Feeding with good Sense and Love" by Ellyn Satter. You can get it on Amazon. It basically says that parents are to provide nutritious meals to kids at appropriate times. Kids then make the choice how much they eat. It makes sense and has helped me tremendously with my second child who also has cf. I knew from the beginning that I was going to let him be in charge of how much food goes into mouth. I was going to treat him like he didn't have cf and it didn't matter if he pushed the plate away and said no. As a result, my second child eats well thankfully.

I think all kids go through what your son is doing. I think your best bet is to read that book I mentioned and try not to let it worry you. Easier said than done, I know. We have clinic next week and I am really anxious about what they are going to say about my daughter's weight.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[skh]

Hi Tanja,

Until my daughter was diagnosed and started taking enzymes she could eat and eat and not gain anything. Taking enzymes has made a total difference for her. My suggestion to you is to let your son eat whatever he likes. The more calories the better! Milkshakes and cheese seem to be my daughter's favorites. She also loves pretzels. I think all kids go through a period where they are kind of picky eaters. Hang in there and I am sure things will get better.

Sue

 

[skh]

Hi Tanja,

Until my daughter was diagnosed and started taking enzymes she could eat and eat and not gain anything. Taking enzymes has made a total difference for her. My suggestion to you is to let your son eat whatever he likes. The more calories the better! Milkshakes and cheese seem to be my daughter's favorites. She also loves pretzels. I think all kids go through a period where they are kind of picky eaters. Hang in there and I am sure things will get better.

Sue

 

[anonymous]

Thank you all for your suggestions. To Sharon, I can so relate to your situation as well. I have the same thing going with my daughter, now 14 months and also w/cf. She eats whatever I put in front of her and is as a result doing really well. My son is the different story. He had all these problems at birth, had a colostomy for the first 6 months of his life and did not get anything to eat for the first 3-4 weeks of his life, except for IV lipids and other liquids. Then when he finally did get home and was on fortified breastmilk I guess, I was so paranoid about the amounts he can eat with the meds, and was so afraid he could get another obstruction that I must have also limited his foodintake somewhat. But by that I do not mean not give him enough food, but I did not really let him try all the things that my daughter started to pick up and eat at a very young age. I put her on solids much earlier then my son etc. I strictly followed the clinic rules and I really wish I would not have done that. Last year I was told by the clinic that if he did not gain more weight they would put him on the tube, and they put me in touch with a family that just did that with their child.
After speaking with that family I understood their reasoning for going with it. Their son did not eat at all, rebelled aginst the meds, etc. They also had two more kids w/o cf and for her it was too much to deal with. So her son was on the tube but also going to therapy classes to learn how to eat.
And I hope nobody will understand it the wrong way - I was determined not to have this happen. So I spent a year trying to teach him to eat and to make food fun. if I found something he liked I'd find ways to beef up the calories and I 'd let him eat whatever he wanted as long as he ate. I rewarded him for every bite he took, but I was so afraid of the docs, that I did not take them to that clinic for a year, instead I went to our peds doc (he is the one that takes care of all the cfer's in out health organisation and works with the clinic) and we kept track of his weight and height and he was actually doing fine. When I went back to clinic last month for the first time again, he did gain 6 pounds during that period and was height proportionate and in the 30th percentile. However he still has days in between where he seems perfectly fine not eating, except for maybe a handful of pretzels and 2-3 pediasure or milk shakes. I guess that is at least something, but it scares me so much when it happens. What stunns me is the amount of energy this kid has. He is going at 100 miles an hour all day long. He even stopped napping 6 months ago. So I guess all he eats is being consumed through his energy.
And there is nothing left to put on his ribs.
I will so appreciate any and all recepies and will also be happy to forward to any of you what little meals work for us. I will check on the enzymes again. Does the not having an appetite connect to all enzymes or might that vary. My kids are on Ultrase. I will ask that docs and keep you posted. Thanks again for all of your great advise.

 

[anonymous]

Thank you all for your suggestions. To Sharon, I can so relate to your situation as well. I have the same thing going with my daughter, now 14 months and also w/cf. She eats whatever I put in front of her and is as a result doing really well. My son is the different story. He had all these problems at birth, had a colostomy for the first 6 months of his life and did not get anything to eat for the first 3-4 weeks of his life, except for IV lipids and other liquids. Then when he finally did get home and was on fortified breastmilk I guess, I was so paranoid about the amounts he can eat with the meds, and was so afraid he could get another obstruction that I must have also limited his foodintake somewhat. But by that I do not mean not give him enough food, but I did not really let him try all the things that my daughter started to pick up and eat at a very young age. I put her on solids much earlier then my son etc. I strictly followed the clinic rules and I really wish I would not have done that. Last year I was told by the clinic that if he did not gain more weight they would put him on the tube, and they put me in touch with a family that just did that with their child.
After speaking with that family I understood their reasoning for going with it. Their son did not eat at all, rebelled aginst the meds, etc. They also had two more kids w/o cf and for her it was too much to deal with. So her son was on the tube but also going to therapy classes to learn how to eat.
And I hope nobody will understand it the wrong way - I was determined not to have this happen. So I spent a year trying to teach him to eat and to make food fun. if I found something he liked I'd find ways to beef up the calories and I 'd let him eat whatever he wanted as long as he ate. I rewarded him for every bite he took, but I was so afraid of the docs, that I did not take them to that clinic for a year, instead I went to our peds doc (he is the one that takes care of all the cfer's in out health organisation and works with the clinic) and we kept track of his weight and height and he was actually doing fine. When I went back to clinic last month for the first time again, he did gain 6 pounds during that period and was height proportionate and in the 30th percentile. However he still has days in between where he seems perfectly fine not eating, except for maybe a handful of pretzels and 2-3 pediasure or milk shakes. I guess that is at least something, but it scares me so much when it happens. What stunns me is the amount of energy this kid has. He is going at 100 miles an hour all day long. He even stopped napping 6 months ago. So I guess all he eats is being consumed through his energy.
And there is nothing left to put on his ribs.
I will so appreciate any and all recepies and will also be happy to forward to any of you what little meals work for us. I will check on the enzymes again. Does the not having an appetite connect to all enzymes or might that vary. My kids are on Ultrase. I will ask that docs and keep you posted. Thanks again for all of your great advise.

 

[anonymous]

DS is almost 3 and has always been a pain to feed. Always been a struggle. Relatives always say, just let him go -- he'll eat when he's hungry. He won't. I constantly am sneaking butter and cream, olive oil into the few foods he'll eat -- he's such a picky toddler eater. Noodles, hamburgers, fries -- that's about it. Fruit snacks, fresh fruit & veggies are what he prefers. At least he's starting to tell us that he wants to eat something or asks for something and we're thrilled. Meanwhile it's carnation instant breakfast made with milk and cream with every meal.

 

[anonymous]

DS is almost 3 and has always been a pain to feed. Always been a struggle. Relatives always say, just let him go -- he'll eat when he's hungry. He won't. I constantly am sneaking butter and cream, olive oil into the few foods he'll eat -- he's such a picky toddler eater. Noodles, hamburgers, fries -- that's about it. Fruit snacks, fresh fruit & veggies are what he prefers. At least he's starting to tell us that he wants to eat something or asks for something and we're thrilled. Meanwhile it's carnation instant breakfast made with milk and cream with every meal.