PDA

View Full Version : Question about Cystic Fibrosis and Dairy??



ErinsMommy
04-11-2007, 05:12 PM
My daughter will be 2 in June.
She was diagnosed with Cystic Fibrosis when she was a month old. Her father took off and i've been living with my mom. She's basically been like a second parent. She DRIVES ME NUTS!!
Everything she reads, she freaks out about. She believes that everything is bad for her. She's very negative about CF and basically considers my daughter like... dying. My daughter is EXTREMELY healthy! CF has not taken a bad tole on her at all. I take very well care of my daughter and everything is going well.
I just got off the phone with my mom. She said she read somewhere that people with cystic fibrosis are not supposed to have dairy. I.E. Milk, cheese, yogurt, potatoes....(because it causes extra mucus)
Those are all things that the clinic said my daughter SHOULD have... and she does and she loves them! I was just thinking "here's my mom being a worry wart again... a pessimist!" so i laughed at her and I told her I wasn't going to stop giving that stuff to my daughter. She started screaming at me telling me I was putting my daughter's life in danger and I was "F***** up" and hung up on me. Can I please get some feedback on this?? I'm stressing out really bad now. I already called my clinic... i'm waiting for them to call me back but I really need someone to help me.
Please!
Am i putting my daughter's life in danger by giving her what's good for her??????

ErinsMommy
04-11-2007, 05:12 PM
My daughter will be 2 in June.
She was diagnosed with Cystic Fibrosis when she was a month old. Her father took off and i've been living with my mom. She's basically been like a second parent. She DRIVES ME NUTS!!
Everything she reads, she freaks out about. She believes that everything is bad for her. She's very negative about CF and basically considers my daughter like... dying. My daughter is EXTREMELY healthy! CF has not taken a bad tole on her at all. I take very well care of my daughter and everything is going well.
I just got off the phone with my mom. She said she read somewhere that people with cystic fibrosis are not supposed to have dairy. I.E. Milk, cheese, yogurt, potatoes....(because it causes extra mucus)
Those are all things that the clinic said my daughter SHOULD have... and she does and she loves them! I was just thinking "here's my mom being a worry wart again... a pessimist!" so i laughed at her and I told her I wasn't going to stop giving that stuff to my daughter. She started screaming at me telling me I was putting my daughter's life in danger and I was "F***** up" and hung up on me. Can I please get some feedback on this?? I'm stressing out really bad now. I already called my clinic... i'm waiting for them to call me back but I really need someone to help me.
Please!
Am i putting my daughter's life in danger by giving her what's good for her??????

ErinsMommy
04-11-2007, 05:12 PM
My daughter will be 2 in June.
She was diagnosed with Cystic Fibrosis when she was a month old. Her father took off and i've been living with my mom. She's basically been like a second parent. She DRIVES ME NUTS!!
Everything she reads, she freaks out about. She believes that everything is bad for her. She's very negative about CF and basically considers my daughter like... dying. My daughter is EXTREMELY healthy! CF has not taken a bad tole on her at all. I take very well care of my daughter and everything is going well.
I just got off the phone with my mom. She said she read somewhere that people with cystic fibrosis are not supposed to have dairy. I.E. Milk, cheese, yogurt, potatoes....(because it causes extra mucus)
Those are all things that the clinic said my daughter SHOULD have... and she does and she loves them! I was just thinking "here's my mom being a worry wart again... a pessimist!" so i laughed at her and I told her I wasn't going to stop giving that stuff to my daughter. She started screaming at me telling me I was putting my daughter's life in danger and I was "F***** up" and hung up on me. Can I please get some feedback on this?? I'm stressing out really bad now. I already called my clinic... i'm waiting for them to call me back but I really need someone to help me.
Please!
Am i putting my daughter's life in danger by giving her what's good for her??????

tlanave
04-11-2007, 07:02 PM
I dont know if this is true but I have always read that that is just an old wives tale. My daughter loves her milk. She would live on pediasure if I let her. I would guess that your clinic is going to tell you that you are doing the right thing. I really dont think you are putting your daughters life at risk lol. Come to think of it when she has been in the hospital in the past they always allowed her dairy. Keep up the good work with her. It is very hard when people mean well but it is very misdirected. Good luck and I wouldn't worry about dairy for now.

tlanave
04-11-2007, 07:02 PM
I dont know if this is true but I have always read that that is just an old wives tale. My daughter loves her milk. She would live on pediasure if I let her. I would guess that your clinic is going to tell you that you are doing the right thing. I really dont think you are putting your daughters life at risk lol. Come to think of it when she has been in the hospital in the past they always allowed her dairy. Keep up the good work with her. It is very hard when people mean well but it is very misdirected. Good luck and I wouldn't worry about dairy for now.

tlanave
04-11-2007, 07:02 PM
I dont know if this is true but I have always read that that is just an old wives tale. My daughter loves her milk. She would live on pediasure if I let her. I would guess that your clinic is going to tell you that you are doing the right thing. I really dont think you are putting your daughters life at risk lol. Come to think of it when she has been in the hospital in the past they always allowed her dairy. Keep up the good work with her. It is very hard when people mean well but it is very misdirected. Good luck and I wouldn't worry about dairy for now.

Ratatosk
04-11-2007, 07:31 PM
Lotsa dairy here! DS gets Carnation instant breakfast made with whole milk and an ounce of cream with breakfast and supper. Loves cheese and yogurt. I add butter to his pasta, sandwiches...

Ratatosk
04-11-2007, 07:31 PM
Lotsa dairy here! DS gets Carnation instant breakfast made with whole milk and an ounce of cream with breakfast and supper. Loves cheese and yogurt. I add butter to his pasta, sandwiches...

Ratatosk
04-11-2007, 07:31 PM
Lotsa dairy here! DS gets Carnation instant breakfast made with whole milk and an ounce of cream with breakfast and supper. Loves cheese and yogurt. I add butter to his pasta, sandwiches...

scarbrough
04-11-2007, 08:17 PM
Does your mom go to clinic with you? If she doesn't maybe she can ask the docs these questions on the next visit..I have the other extreme..people thinking I'm too paranoid...keeping her in during allergy season..washing her hands..using sanitizer..I had them go with me soon after we found out Hannah had cf...this helped alot....the docs also told us to be careful about what we read on the internet..take it with a grain of salt...and we were told to always call them if we were uncomfortable with something or had any questions/concerns...maybe you can do have the doctor prepare info on why milk is so good...that way your mom may take it easier on you..But if noone has told you, your doing fine!

scarbrough
04-11-2007, 08:17 PM
Does your mom go to clinic with you? If she doesn't maybe she can ask the docs these questions on the next visit..I have the other extreme..people thinking I'm too paranoid...keeping her in during allergy season..washing her hands..using sanitizer..I had them go with me soon after we found out Hannah had cf...this helped alot....the docs also told us to be careful about what we read on the internet..take it with a grain of salt...and we were told to always call them if we were uncomfortable with something or had any questions/concerns...maybe you can do have the doctor prepare info on why milk is so good...that way your mom may take it easier on you..But if noone has told you, your doing fine!

scarbrough
04-11-2007, 08:17 PM
Does your mom go to clinic with you? If she doesn't maybe she can ask the docs these questions on the next visit..I have the other extreme..people thinking I'm too paranoid...keeping her in during allergy season..washing her hands..using sanitizer..I had them go with me soon after we found out Hannah had cf...this helped alot....the docs also told us to be careful about what we read on the internet..take it with a grain of salt...and we were told to always call them if we were uncomfortable with something or had any questions/concerns...maybe you can do have the doctor prepare info on why milk is so good...that way your mom may take it easier on you..But if noone has told you, your doing fine!

love4josh
04-14-2007, 12:33 PM
cf effects each person differently, what works for one may not work for another. if what your doing is working, she is gaining weight and staying healthy, stick with it.

love4josh
04-14-2007, 12:33 PM
cf effects each person differently, what works for one may not work for another. if what your doing is working, she is gaining weight and staying healthy, stick with it.

love4josh
04-14-2007, 12:33 PM
cf effects each person differently, what works for one may not work for another. if what your doing is working, she is gaining weight and staying healthy, stick with it.

Foody
04-17-2007, 01:17 AM
Like another poster said everyone is different. Dairy doesn't work for my son or myself for that matter. I think where this dairy=more mucus comes in, it that dairy is one of the most difficult proteins for humans to digest (casein) and many people do have allergy/sensativities to it without knowing it. This unknown allergy can cause inflammation in the gut and elsewhere causing more mucus production. In addition, the hormones and other unmentionables in non-organic milk can irritate the system causing inflammation. Some people find by switching to organic, non-homegenized or sticking with cultured milk products (yogurt, buttermilk, kefir) they see a difference in congestion/digestion. Others have to avoid it all together. This is why you see dairy avoidance on many anti-inflammatory diets. Again, it is individual.

What we have chosen to do since we know it bothers him, is allergy elimination (NAET) which will stop his body from reacting to whatever he is sensative. It is both a testing and a treating technique and can eliminate allergies all together. I have know many parents who have personally used this approach and seen amazing results. I am in the middle of my treatment and my son is starting next week.

Foody
04-17-2007, 01:17 AM
Like another poster said everyone is different. Dairy doesn't work for my son or myself for that matter. I think where this dairy=more mucus comes in, it that dairy is one of the most difficult proteins for humans to digest (casein) and many people do have allergy/sensativities to it without knowing it. This unknown allergy can cause inflammation in the gut and elsewhere causing more mucus production. In addition, the hormones and other unmentionables in non-organic milk can irritate the system causing inflammation. Some people find by switching to organic, non-homegenized or sticking with cultured milk products (yogurt, buttermilk, kefir) they see a difference in congestion/digestion. Others have to avoid it all together. This is why you see dairy avoidance on many anti-inflammatory diets. Again, it is individual.

What we have chosen to do since we know it bothers him, is allergy elimination (NAET) which will stop his body from reacting to whatever he is sensative. It is both a testing and a treating technique and can eliminate allergies all together. I have know many parents who have personally used this approach and seen amazing results. I am in the middle of my treatment and my son is starting next week.

Foody
04-17-2007, 01:17 AM
Like another poster said everyone is different. Dairy doesn't work for my son or myself for that matter. I think where this dairy=more mucus comes in, it that dairy is one of the most difficult proteins for humans to digest (casein) and many people do have allergy/sensativities to it without knowing it. This unknown allergy can cause inflammation in the gut and elsewhere causing more mucus production. In addition, the hormones and other unmentionables in non-organic milk can irritate the system causing inflammation. Some people find by switching to organic, non-homegenized or sticking with cultured milk products (yogurt, buttermilk, kefir) they see a difference in congestion/digestion. Others have to avoid it all together. This is why you see dairy avoidance on many anti-inflammatory diets. Again, it is individual.

What we have chosen to do since we know it bothers him, is allergy elimination (NAET) which will stop his body from reacting to whatever he is sensative. It is both a testing and a treating technique and can eliminate allergies all together. I have know many parents who have personally used this approach and seen amazing results. I am in the middle of my treatment and my son is starting next week.

EnergyGal
04-17-2007, 12:26 PM
I know that as a child, Dairy did not bother me so much when i was little. My mother always gave me skim milk and I do not remember eating too much cheese. When I was older, I would go off milk products and would notice a great reduction in mucus. Then I would think how could that be possible? I tried it many times until I convinced myself that Dairy in general is mucus producing in every aspect of the body. As a transplant patient, the mucus in my sinuses would greatly thinken if I have dairy. I noticed it happend right away within a few hours the mucus thickens. I use to think, I am getting an infection when it was the dairy that was creating more mucus. I think that the amount of extra mucus that becomes present from dairy is far greater than the amount of a typical infection. Just my observation from my own body of course.

I strongly suggest if one goes off dairy that they start to eat many green vegetables and foods that contain calcium along with other minerals and consult a nutritionist for the best supplements out there depending on the age of the patient.

About NAET, I think it is a wonderful approach. I love NAET. I have used NAET for many years with many different practioners. I am now able to use a similar approach myself.

EnergyGal
04-17-2007, 12:26 PM
I know that as a child, Dairy did not bother me so much when i was little. My mother always gave me skim milk and I do not remember eating too much cheese. When I was older, I would go off milk products and would notice a great reduction in mucus. Then I would think how could that be possible? I tried it many times until I convinced myself that Dairy in general is mucus producing in every aspect of the body. As a transplant patient, the mucus in my sinuses would greatly thinken if I have dairy. I noticed it happend right away within a few hours the mucus thickens. I use to think, I am getting an infection when it was the dairy that was creating more mucus. I think that the amount of extra mucus that becomes present from dairy is far greater than the amount of a typical infection. Just my observation from my own body of course.

I strongly suggest if one goes off dairy that they start to eat many green vegetables and foods that contain calcium along with other minerals and consult a nutritionist for the best supplements out there depending on the age of the patient.

About NAET, I think it is a wonderful approach. I love NAET. I have used NAET for many years with many different practioners. I am now able to use a similar approach myself.

EnergyGal
04-17-2007, 12:26 PM
I know that as a child, Dairy did not bother me so much when i was little. My mother always gave me skim milk and I do not remember eating too much cheese. When I was older, I would go off milk products and would notice a great reduction in mucus. Then I would think how could that be possible? I tried it many times until I convinced myself that Dairy in general is mucus producing in every aspect of the body. As a transplant patient, the mucus in my sinuses would greatly thinken if I have dairy. I noticed it happend right away within a few hours the mucus thickens. I use to think, I am getting an infection when it was the dairy that was creating more mucus. I think that the amount of extra mucus that becomes present from dairy is far greater than the amount of a typical infection. Just my observation from my own body of course.

I strongly suggest if one goes off dairy that they start to eat many green vegetables and foods that contain calcium along with other minerals and consult a nutritionist for the best supplements out there depending on the age of the patient.

About NAET, I think it is a wonderful approach. I love NAET. I have used NAET for many years with many different practioners. I am now able to use a similar approach myself.

scarbrough
04-17-2007, 12:42 PM
As a new mother to cf..this is the first I have heard about this..whatconcerns me is that the docs have told me to give her whole milk to help her get all the fats....we are currently having major sinus probs..wheezing..yikes..on pulmicort & xopenex(breathing machine) on top of the normal every other 28 day cycle of Tobi...I'm exhausted,so I know my 2yr old is...I'm thinking about cutting out the milk for a short time to see if I notice any changes....i'll replace fat & calcium some other way....this will be hard with the dairy issue,because we eat alot of cheese, yogurt & milk...

scarbrough
04-17-2007, 12:42 PM
As a new mother to cf..this is the first I have heard about this..whatconcerns me is that the docs have told me to give her whole milk to help her get all the fats....we are currently having major sinus probs..wheezing..yikes..on pulmicort & xopenex(breathing machine) on top of the normal every other 28 day cycle of Tobi...I'm exhausted,so I know my 2yr old is...I'm thinking about cutting out the milk for a short time to see if I notice any changes....i'll replace fat & calcium some other way....this will be hard with the dairy issue,because we eat alot of cheese, yogurt & milk...

scarbrough
04-17-2007, 12:42 PM
As a new mother to cf..this is the first I have heard about this..whatconcerns me is that the docs have told me to give her whole milk to help her get all the fats....we are currently having major sinus probs..wheezing..yikes..on pulmicort & xopenex(breathing machine) on top of the normal every other 28 day cycle of Tobi...I'm exhausted,so I know my 2yr old is...I'm thinking about cutting out the milk for a short time to see if I notice any changes....i'll replace fat & calcium some other way....this will be hard with the dairy issue,because we eat alot of cheese, yogurt & milk...

Ratatosk
04-17-2007, 02:28 PM
Could be a sinus infection or seasonal allergies, too that is causing the wheezing, etc. We've always done breathing treatments 3-4 times a day with duoneb (albuterol & atrovent) and DS has been on Tobi since DS was an infant.

Even if DS had issues with dairy or any other foods, we wouldn't stop doing any of the preventative breathing & CPT treatments.

Ratatosk
04-17-2007, 02:28 PM
Could be a sinus infection or seasonal allergies, too that is causing the wheezing, etc. We've always done breathing treatments 3-4 times a day with duoneb (albuterol & atrovent) and DS has been on Tobi since DS was an infant.

Even if DS had issues with dairy or any other foods, we wouldn't stop doing any of the preventative breathing & CPT treatments.

Ratatosk
04-17-2007, 02:28 PM
Could be a sinus infection or seasonal allergies, too that is causing the wheezing, etc. We've always done breathing treatments 3-4 times a day with duoneb (albuterol & atrovent) and DS has been on Tobi since DS was an infant.

Even if DS had issues with dairy or any other foods, we wouldn't stop doing any of the preventative breathing & CPT treatments.

scarbrough
04-17-2007, 02:38 PM
We think this stemmed from seasonal allergies, too, no infection...chest xray looked good...but I really push the whole milk & cheese on her..so it concerned me when I read this...just something I plan to pay extra attention to..this is the first time we have had to duoneb..she has been on Tobi since May'06, pseudo on throat culture..only tested positive that one time...anyway..not gonna stop any of her meds, just gonna watch the reaction to dairy & no dairy..we'll see....

scarbrough
04-17-2007, 02:38 PM
We think this stemmed from seasonal allergies, too, no infection...chest xray looked good...but I really push the whole milk & cheese on her..so it concerned me when I read this...just something I plan to pay extra attention to..this is the first time we have had to duoneb..she has been on Tobi since May'06, pseudo on throat culture..only tested positive that one time...anyway..not gonna stop any of her meds, just gonna watch the reaction to dairy & no dairy..we'll see....

scarbrough
04-17-2007, 02:38 PM
We think this stemmed from seasonal allergies, too, no infection...chest xray looked good...but I really push the whole milk & cheese on her..so it concerned me when I read this...just something I plan to pay extra attention to..this is the first time we have had to duoneb..she has been on Tobi since May'06, pseudo on throat culture..only tested positive that one time...anyway..not gonna stop any of her meds, just gonna watch the reaction to dairy & no dairy..we'll see....

Ratatosk
04-17-2007, 02:49 PM
When DS was about 7 months old he developed a wheeze, sinus issues.. Lungs were always clear. I mentioned it to his doctor, who told us to up his "beatments" & nebs ("beat that wheeze out of him"). Then we had a regular clinic appointment a few months later when he was 10 months old and the doctor indicated he'd probably caught an upper respiratory bug AND he had a nasty sinus infection.

New mom that I was, thought it was NORMAL for kids to have nasty boogery noses during the winter months. Doctor put DS on augmentin for 20 days to knock out the infection once and for all. Didn't have any issues after that.

Ratatosk
04-17-2007, 02:49 PM
When DS was about 7 months old he developed a wheeze, sinus issues.. Lungs were always clear. I mentioned it to his doctor, who told us to up his "beatments" & nebs ("beat that wheeze out of him"). Then we had a regular clinic appointment a few months later when he was 10 months old and the doctor indicated he'd probably caught an upper respiratory bug AND he had a nasty sinus infection.

New mom that I was, thought it was NORMAL for kids to have nasty boogery noses during the winter months. Doctor put DS on augmentin for 20 days to knock out the infection once and for all. Didn't have any issues after that.

Ratatosk
04-17-2007, 02:49 PM
When DS was about 7 months old he developed a wheeze, sinus issues.. Lungs were always clear. I mentioned it to his doctor, who told us to up his "beatments" & nebs ("beat that wheeze out of him"). Then we had a regular clinic appointment a few months later when he was 10 months old and the doctor indicated he'd probably caught an upper respiratory bug AND he had a nasty sinus infection.

New mom that I was, thought it was NORMAL for kids to have nasty boogery noses during the winter months. Doctor put DS on augmentin for 20 days to knock out the infection once and for all. Didn't have any issues after that.

scarbrough
04-17-2007, 03:22 PM
That sounds like what is happening with Hannah, hopefully we will have the same outcome..she always has had dietary issues..this is the first "lung" issue...thanks for your help!!

scarbrough
04-17-2007, 03:22 PM
That sounds like what is happening with Hannah, hopefully we will have the same outcome..she always has had dietary issues..this is the first "lung" issue...thanks for your help!!

scarbrough
04-17-2007, 03:22 PM
That sounds like what is happening with Hannah, hopefully we will have the same outcome..she always has had dietary issues..this is the first "lung" issue...thanks for your help!!

EnergyGal
04-17-2007, 06:22 PM
I only learned about the dairy issue causing extra mucus as an adult. I cannot say what age would be best. I really like Foody's comments. She has an amazing website on nutrition and CF. I would visit her site at

<a target=_blank class=ftalternatingbarlinklarge href="http://cfnutrition4life.com">http://cfnutrition4life.com</a>

EnergyGal
04-17-2007, 06:22 PM
I only learned about the dairy issue causing extra mucus as an adult. I cannot say what age would be best. I really like Foody's comments. She has an amazing website on nutrition and CF. I would visit her site at

<a target=_blank class=ftalternatingbarlinklarge href="http://cfnutrition4life.com">http://cfnutrition4life.com</a>

EnergyGal
04-17-2007, 06:22 PM
I only learned about the dairy issue causing extra mucus as an adult. I cannot say what age would be best. I really like Foody's comments. She has an amazing website on nutrition and CF. I would visit her site at

<a target=_blank class=ftalternatingbarlinklarge href="http://cfnutrition4life.com">http://cfnutrition4life.com</a>