daughter with newly diagnosed CF

[mistylavon]

Hi, my name is Misty and my 15 month old daughter was diagonosed w/ CF about 2 1/2 weeks ago, her name is Morgan. This has been pretty hard on us. Some days I can talk about it and some days are very emotional for me. She's only having digestive problems right now. We're going to the CF center in Anchorage, AK March 7-8 to see a new ped. pulmonologist and for her to have a broncoscopy and maybe a chest scan. I know there are great CF success stories out there but I still think the worst sometimes. Each day is getting easier though.

The pulmonologist we saw in Arizona when we found out she had CF said as far as diet goes pizza is one of the best foods for them. He said go out and buy the worst junk foods for you and those are the best foods for them. The total opposite of what you would think of a healthy diet. How do other parents here feed their CF children? It seems so wierd that these could be good for her. Besides that, it's hard for me not to eat these awful foods when their in my house. Does anyone give their children weight gaining products like protein powders, etc?

I hope it's ok if I often post questions here. I have so much unanswered and so much to learn.

Thanks!
Misty

 

[mistylavon]

Hi, my name is Misty and my 15 month old daughter was diagonosed w/ CF about 2 1/2 weeks ago, her name is Morgan. This has been pretty hard on us. Some days I can talk about it and some days are very emotional for me. She's only having digestive problems right now. We're going to the CF center in Anchorage, AK March 7-8 to see a new ped. pulmonologist and for her to have a broncoscopy and maybe a chest scan. I know there are great CF success stories out there but I still think the worst sometimes. Each day is getting easier though.

The pulmonologist we saw in Arizona when we found out she had CF said as far as diet goes pizza is one of the best foods for them. He said go out and buy the worst junk foods for you and those are the best foods for them. The total opposite of what you would think of a healthy diet. How do other parents here feed their CF children? It seems so wierd that these could be good for her. Besides that, it's hard for me not to eat these awful foods when their in my house. Does anyone give their children weight gaining products like protein powders, etc?

I hope it's ok if I often post questions here. I have so much unanswered and so much to learn.

Thanks!
Misty

 

[JazzysMom]

You will hear opposing thoughts on this. It is important to have a balanced diet. The balanced diet not only gives us the proper nutrition, but it helps our body to absorb properly when you have a balance of all the good stuff. On the other hand....calories are very, very important. That is propably where the pizza comes in. I guess you can say its the healthier of the "junk" food. It has dairy, tomatoes (sauce form), bread & whatever additional is put on it. I was dx at 7 & to tell you the truth....I eat healthy for the most part. I could do better, but when I have to choose between nutrition & calories, I go for the calories. Weight is a big thing for me so calories dictates my choices before the nutritional value. I am proud to say that I am not a big chip or sweets eater. I have been on a milk & oreo kick at bed time, but that is the extent of my sweets. If you can find a balance of nutritional/caloric intake...that is your best bet. You will have times that weight issues become critical or the appetite stinks....then chances are you will do what works! By the way....Welcome and we look forward to help educate you!

 

[JazzysMom]

You will hear opposing thoughts on this. It is important to have a balanced diet. The balanced diet not only gives us the proper nutrition, but it helps our body to absorb properly when you have a balance of all the good stuff. On the other hand....calories are very, very important. That is propably where the pizza comes in. I guess you can say its the healthier of the "junk" food. It has dairy, tomatoes (sauce form), bread & whatever additional is put on it. I was dx at 7 & to tell you the truth....I eat healthy for the most part. I could do better, but when I have to choose between nutrition & calories, I go for the calories. Weight is a big thing for me so calories dictates my choices before the nutritional value. I am proud to say that I am not a big chip or sweets eater. I have been on a milk & oreo kick at bed time, but that is the extent of my sweets. If you can find a balance of nutritional/caloric intake...that is your best bet. You will have times that weight issues become critical or the appetite stinks....then chances are you will do what works! By the way....Welcome and we look forward to help educate you!

 

[2005CFmom]

Hello Misty,
My eight year old daughter was diagnosed last August. I still get emotional about it sometimes, but far less often than when she was first diagnosed. With me, the most emotional part is telling people about it. I don't know why, maybe because I know what a bomb shell I am dropping on them. I would cry when I told them about it, but after they already knew, I was able to talk to them rationally, without all the tears. It does get easier with time.
As far as the CF diet, I don't know if I agree with your doctor. We still give Sarah a balanced diet. But some of the differences included going back to whole milk instead of lowfat, making milkshakes with cream or half & half instead of milk. Adding extra butter where ever we can. But we don't intensionally go out and buy a bunch of junk for her (although I don't feel guilty any more when she does eat junk food!)

Alot will depend on what works for you guys. Sarah likes steamed broccoli & carrots more than she likes french fries! So that makes it alot easier to feed her a balanced diet, she will actually eat it!

Anyway, just wanted to say welcome!

 

[2005CFmom]

Hello Misty,
My eight year old daughter was diagnosed last August. I still get emotional about it sometimes, but far less often than when she was first diagnosed. With me, the most emotional part is telling people about it. I don't know why, maybe because I know what a bomb shell I am dropping on them. I would cry when I told them about it, but after they already knew, I was able to talk to them rationally, without all the tears. It does get easier with time.
As far as the CF diet, I don't know if I agree with your doctor. We still give Sarah a balanced diet. But some of the differences included going back to whole milk instead of lowfat, making milkshakes with cream or half & half instead of milk. Adding extra butter where ever we can. But we don't intensionally go out and buy a bunch of junk for her (although I don't feel guilty any more when she does eat junk food!)

Alot will depend on what works for you guys. Sarah likes steamed broccoli & carrots more than she likes french fries! So that makes it alot easier to feed her a balanced diet, she will actually eat it!

Anyway, just wanted to say welcome!

 

[Jane]

Hi Misty,
You will always be emotional, depends on the day. It does get easier. For me, it is easier dealing with the science of it than the fact that this is YOUR kid. (emotional vs intellectual) There's so much to learn.

It is kind of funny cooking for cf kids. My kids are both small, but seem to crave things like carrot sticks. We find ourselves saying things like " no you can't have any more broccoli until you eat your ice cream" warped! We use heavy cream and butter in a lot of things. We look for the nutrition labels that show the MOST calories. Some bread is 110 a slice, and of course good old Hagen daaz is 250 for a 1/2 cup. My advice is to not make eating an issue. We did with our kids and I'm afraid we created a problem.

Take it slow!

 

[Jane]

Hi Misty,
You will always be emotional, depends on the day. It does get easier. For me, it is easier dealing with the science of it than the fact that this is YOUR kid. (emotional vs intellectual) There's so much to learn.

It is kind of funny cooking for cf kids. My kids are both small, but seem to crave things like carrot sticks. We find ourselves saying things like " no you can't have any more broccoli until you eat your ice cream" warped! We use heavy cream and butter in a lot of things. We look for the nutrition labels that show the MOST calories. Some bread is 110 a slice, and of course good old Hagen daaz is 250 for a 1/2 cup. My advice is to not make eating an issue. We did with our kids and I'm afraid we created a problem.

Take it slow!

 

[JazzysMom]

Jane.....that is funny. No I am sorry, we dont allow her to have vegetables unless she has eaten at least 1/2 gallon of ice cream.....LOL!

 

[JazzysMom]

Jane.....that is funny. No I am sorry, we dont allow her to have vegetables unless she has eaten at least 1/2 gallon of ice cream.....LOL!

 

[Alyssa]

Welcome Misty -- yes of course it's ok to post all your questions -- that's what it's all about here !

I just want to second Melissa's post -- and add a little clarification to what your doc was probably after. I don't agree that you have to feed your daughter junk food only but the point he was probably trying to get across was the added calories. So feed her all the good food too, you will not go wrong there.

We don't deal with nutritional stuff very often as my kids are both pancreatic sufficient but we do need to watch the weight on my daughter since she dropped 10 pounds with her last infection. We were told to stick with good balanced diet but add in anything that was easy extra calories like:

Whole milk instead of 2%
Half & Half on cereal instead of milk
Cheese
Ice Cream
Whip Cream
Butter

The nutritionist also mentioned that they never see a problem with high cholesterol with people with CF either -- she explained why but I don't remember -- something with how their bodies work so at least that is one less thing to worry about huh?

Oh and by the way, my sister moved the opposite of you... she was in Alaska for 15 years then moved to Arizona.

 

[Alyssa]

Welcome Misty -- yes of course it's ok to post all your questions -- that's what it's all about here !

I just want to second Melissa's post -- and add a little clarification to what your doc was probably after. I don't agree that you have to feed your daughter junk food only but the point he was probably trying to get across was the added calories. So feed her all the good food too, you will not go wrong there.

We don't deal with nutritional stuff very often as my kids are both pancreatic sufficient but we do need to watch the weight on my daughter since she dropped 10 pounds with her last infection. We were told to stick with good balanced diet but add in anything that was easy extra calories like:

Whole milk instead of 2%
Half & Half on cereal instead of milk
Cheese
Ice Cream
Whip Cream
Butter

The nutritionist also mentioned that they never see a problem with high cholesterol with people with CF either -- she explained why but I don't remember -- something with how their bodies work so at least that is one less thing to worry about huh?

Oh and by the way, my sister moved the opposite of you... she was in Alaska for 15 years then moved to Arizona.

 

[anonymous]

Our doctor said something similar, but instead of pizza it was fast food. I get the giggles sometimes reading labels in the grocery store to find stuff with MORE calories and fat than less. Yogurt is a biggy. Someone on the adult forum said it best -- they don't worry about high fat content junk food, etc. 'cuz THAT'S not what's going to kill them.

DS loves fruits and veggies, so he gets enough of those -- I put olive oil or butter in his casseroles. We give him Carnation instant breakfast with whole milk and an ounce of cream with each meal. He gets to eat at McDonalds once a week where he has a hamburger happy meal, french fries and chocolate milk.

I'd love it if DS would ask for cookies, candy, ice cream or dessert, but he's just not a sweets person. I give him a package of fruit snacks every afternoon when I pick him up from daycare, let him snack on pretzels, crackers whatever he wants to eat.

 

[anonymous]

Our doctor said something similar, but instead of pizza it was fast food. I get the giggles sometimes reading labels in the grocery store to find stuff with MORE calories and fat than less. Yogurt is a biggy. Someone on the adult forum said it best -- they don't worry about high fat content junk food, etc. 'cuz THAT'S not what's going to kill them.

DS loves fruits and veggies, so he gets enough of those -- I put olive oil or butter in his casseroles. We give him Carnation instant breakfast with whole milk and an ounce of cream with each meal. He gets to eat at McDonalds once a week where he has a hamburger happy meal, french fries and chocolate milk.

I'd love it if DS would ask for cookies, candy, ice cream or dessert, but he's just not a sweets person. I give him a package of fruit snacks every afternoon when I pick him up from daycare, let him snack on pretzels, crackers whatever he wants to eat.

 

[anonymous]

Well, I know how you are feeling. I have 3 children now 2 with cf and we found out they both had cf in 2002 a day apart. I still cry talking about it, but I have to say I am able to read alittle more about it. I have a hard time when it comes with teachers. I don't want them to treat her different but want her taken care of when she is not with me. My son is 5 and starts school in Aug and I am already starting to meet with the school so they can be prepared. My son is very picky when it comes to mealtime. My daughter eats well. With my son its whatever he wants to get the calories in. We supplement with nutren jr with the help of a g-tube. Hang in there it does get easier. Added calories is the best. Whole milk, real butter. Scandacal works well also. It does not taste bad and can be put on food and in drinks. When you go to the cf center they will give you good tips.
Mother of sydney w/cf, Trey w/cf and Abbey no cf

 

[anonymous]

Well, I know how you are feeling. I have 3 children now 2 with cf and we found out they both had cf in 2002 a day apart. I still cry talking about it, but I have to say I am able to read alittle more about it. I have a hard time when it comes with teachers. I don't want them to treat her different but want her taken care of when she is not with me. My son is 5 and starts school in Aug and I am already starting to meet with the school so they can be prepared. My son is very picky when it comes to mealtime. My daughter eats well. With my son its whatever he wants to get the calories in. We supplement with nutren jr with the help of a g-tube. Hang in there it does get easier. Added calories is the best. Whole milk, real butter. Scandacal works well also. It does not taste bad and can be put on food and in drinks. When you go to the cf center they will give you good tips.
Mother of sydney w/cf, Trey w/cf and Abbey no cf

 

[skh]

Welcome Misty! I know what you mean about being on an emotional roller coaster. I am much better now than I was 3 1/2 yrs. ago when we found out about our daughter. But there are still times...

I understand what Jane is saying - my daughter has always been a healthy eater and sometimes it's hard to have them gain weight. A few things that seem to work for her is she loves malts, pizza and pretzels. She has a malt just about every day and I can't seem to buy enough pretzels! I don't tend to worry so much about what she's eating as long as she eats and is happy. I also know that the enzymes helped my daughter retain what she needed from the foods that she was eating. I do have to admit though that she does like pizza and it's not unusual for her to make a frozen pizza and eat the whole darn thing! I don't get all worked up about that either. My daughter weighed 60 lbs when we found out she had CF and now at almost the age of 15 she has just made it over 100 lbs. I feel like we are doing ok.

Sue

 

[skh]

Welcome Misty! I know what you mean about being on an emotional roller coaster. I am much better now than I was 3 1/2 yrs. ago when we found out about our daughter. But there are still times...

I understand what Jane is saying - my daughter has always been a healthy eater and sometimes it's hard to have them gain weight. A few things that seem to work for her is she loves malts, pizza and pretzels. She has a malt just about every day and I can't seem to buy enough pretzels! I don't tend to worry so much about what she's eating as long as she eats and is happy. I also know that the enzymes helped my daughter retain what she needed from the foods that she was eating. I do have to admit though that she does like pizza and it's not unusual for her to make a frozen pizza and eat the whole darn thing! I don't get all worked up about that either. My daughter weighed 60 lbs when we found out she had CF and now at almost the age of 15 she has just made it over 100 lbs. I feel like we are doing ok.

Sue

 

[Alyssa]

One more thought Misty, about not wanting to load up your house with "junk food" -- sticking with the theme "you are really after the calories, not the junk" try finding some high calorie cook books or recipes -- I might have a link (I'll go see if I can find it) or someone here might know of one, but if this is a big struggle for you, remember you can always use the best ingredients (organic. steroid free, free range chicken etc) stuff you want to buy and make them into a high calorie meal such as enchiladas loaded with cheese or pizza with all the veggies you want etc. So the eating junk food doesn't really have to mean unhealthy, processed food -- make it yourself with the best building blocks.

 

[Alyssa]

One more thought Misty, about not wanting to load up your house with "junk food" -- sticking with the theme "you are really after the calories, not the junk" try finding some high calorie cook books or recipes -- I might have a link (I'll go see if I can find it) or someone here might know of one, but if this is a big struggle for you, remember you can always use the best ingredients (organic. steroid free, free range chicken etc) stuff you want to buy and make them into a high calorie meal such as enchiladas loaded with cheese or pizza with all the veggies you want etc. So the eating junk food doesn't really have to mean unhealthy, processed food -- make it yourself with the best building blocks.