Diet and supplements

A

AleksandraKaczynska

New member
Hi
I'mm from Poland.

My daughter - 3 years old - is under good care in the Warsaw Mother and Child Institute - cystic fibrosis department.
So far she is healthy but I have some questions about using diet supplements every day- extra minerals, synbiotics and omega-3.

As far as supplements - our doctors say - natural diet will do the job - but it is hard to make a 3 year old eat as much as recommended. The only thing they prescribe is AquAdeks and salt.

I trust our medical stuff in many ways but also feel that in some ways they are behind to the more developed countries.
I had contact with parents who had to go abroad with their children - and they confirmed this. Actually, many choose to leave Poland for good too get better medical treatment for their child.

I can use diet supplements on my own - but would like to hear the opinion of other peaople or medical staff.

Also, I would like to know if it is recommended to use The Vest ( <a target=_blank class=ftalternatingbarlinklarge href="http://richtermed.pl/oferta.php?pn=153">http://richtermed.pl/oferta.php?pn=153</a> ) It is quite expensive and I would need help from funds here in Poland. It is possible but I wonder if necessary.
My daughter does not need hospitalization at this stage - and I'm glad - because the conditions in our hospitals are really bad and cross-infections are "normal" - they are getting better - but very slowly. Hope this will change before our first stay.
 
A

AleksandraKaczynska

New member
Hi
I'mm from Poland.

My daughter - 3 years old - is under good care in the Warsaw Mother and Child Institute - cystic fibrosis department.
So far she is healthy but I have some questions about using diet supplements every day- extra minerals, synbiotics and omega-3.

As far as supplements - our doctors say - natural diet will do the job - but it is hard to make a 3 year old eat as much as recommended. The only thing they prescribe is AquAdeks and salt.

I trust our medical stuff in many ways but also feel that in some ways they are behind to the more developed countries.
I had contact with parents who had to go abroad with their children - and they confirmed this. Actually, many choose to leave Poland for good too get better medical treatment for their child.

I can use diet supplements on my own - but would like to hear the opinion of other peaople or medical staff.

Also, I would like to know if it is recommended to use The Vest ( <a target=_blank class=ftalternatingbarlinklarge href="http://richtermed.pl/oferta.php?pn=153">http://richtermed.pl/oferta.php?pn=153</a> ) It is quite expensive and I would need help from funds here in Poland. It is possible but I wonder if necessary.
My daughter does not need hospitalization at this stage - and I'm glad - because the conditions in our hospitals are really bad and cross-infections are "normal" - they are getting better - but very slowly. Hope this will change before our first stay.
 
A

AleksandraKaczynska

New member
Hi
<br />I'mm from Poland.
<br />
<br />My daughter - 3 years old - is under good care in the Warsaw Mother and Child Institute - cystic fibrosis department.
<br />So far she is healthy but I have some questions about using diet supplements every day- extra minerals, synbiotics and omega-3.
<br />
<br />As far as supplements - our doctors say - natural diet will do the job - but it is hard to make a 3 year old eat as much as recommended. The only thing they prescribe is AquAdeks and salt.
<br />
<br />I trust our medical stuff in many ways but also feel that in some ways they are behind to the more developed countries.
<br />I had contact with parents who had to go abroad with their children - and they confirmed this. Actually, many choose to leave Poland for good too get better medical treatment for their child.
<br />
<br />I can use diet supplements on my own - but would like to hear the opinion of other peaople or medical staff.
<br />
<br />Also, I would like to know if it is recommended to use The Vest ( <a target=_blank class=ftalternatingbarlinklarge href="http://richtermed.pl/oferta.php?pn=153">http://richtermed.pl/oferta.php?pn=153</a> ) It is quite expensive and I would need help from funds here in Poland. It is possible but I wonder if necessary.
<br />My daughter does not need hospitalization at this stage - and I'm glad - because the conditions in our hospitals are really bad and cross-infections are "normal" - they are getting better - but very slowly. Hope this will change before our first stay.
 
Y

ymikhale

New member
Welcome to the site. you will find a lots of useful information and support here.

concerning your question about diet and supplements, I try to give my 2.5 y/o mostly organic diet without any additives or preservatives. I also supplement with sea salt instead of regular table salt (which is processed) and use coconut oil in her veggies on almost daily basis to add calories.

As to the vest, opinions differ on this forum, some people swear by it, others use other CPT methods. Everyone agrees though that you need to do some kind of CPT to keep the lungs clear.
We don't have the vest (I am in France), but we have a RT who makes house calls and we are quite happy with this.

don't hesitate to ask questions.
 
Y

ymikhale

New member
Welcome to the site. you will find a lots of useful information and support here.

concerning your question about diet and supplements, I try to give my 2.5 y/o mostly organic diet without any additives or preservatives. I also supplement with sea salt instead of regular table salt (which is processed) and use coconut oil in her veggies on almost daily basis to add calories.

As to the vest, opinions differ on this forum, some people swear by it, others use other CPT methods. Everyone agrees though that you need to do some kind of CPT to keep the lungs clear.
We don't have the vest (I am in France), but we have a RT who makes house calls and we are quite happy with this.

don't hesitate to ask questions.
 
Y

ymikhale

New member
Welcome to the site. you will find a lots of useful information and support here.
<br />
<br />concerning your question about diet and supplements, I try to give my 2.5 y/o mostly organic diet without any additives or preservatives. I also supplement with sea salt instead of regular table salt (which is processed) and use coconut oil in her veggies on almost daily basis to add calories.
<br />
<br />As to the vest, opinions differ on this forum, some people swear by it, others use other CPT methods. Everyone agrees though that you need to do some kind of CPT to keep the lungs clear.
<br />We don't have the vest (I am in France), but we have a RT who makes house calls and we are quite happy with this.
<br />
<br />don't hesitate to ask questions.
 
A

AleksandraKaczynska

New member
I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.
Joanna is to small to use the flutter.So I'm wondering about the vest.

Organic food is great - and I do everything to bring up my daughter using a healthy - organic - homemade diet. I even learned to bake real bread - like our grandmother's used to. delicious and we all benifit from it. Even my grandfather said - it's like I remembered from childhood!

But still - in our colder climate - the organic food gets worst in winter - spring and I fell I need to use supplements. Bying food from the so called "ecology shops" does not work here - there are no standards and often the food sold in supermarkets is better then in such shops <img src="i/expressions/face-icon-small-sad.gif" border="0">
Fish are very expensive.
That is why I ask about supplementing probiotics (or synbiotics), minerals and omega 3 - esspecially now - when most children and adults are sick.
 
A

AleksandraKaczynska

New member
I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.
Joanna is to small to use the flutter.So I'm wondering about the vest.

Organic food is great - and I do everything to bring up my daughter using a healthy - organic - homemade diet. I even learned to bake real bread - like our grandmother's used to. delicious and we all benifit from it. Even my grandfather said - it's like I remembered from childhood!

But still - in our colder climate - the organic food gets worst in winter - spring and I fell I need to use supplements. Bying food from the so called "ecology shops" does not work here - there are no standards and often the food sold in supermarkets is better then in such shops <img src="i/expressions/face-icon-small-sad.gif" border="0">
Fish are very expensive.
That is why I ask about supplementing probiotics (or synbiotics), minerals and omega 3 - esspecially now - when most children and adults are sick.
 
A

AleksandraKaczynska

New member
I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.
<br />Joanna is to small to use the flutter.So I'm wondering about the vest.
<br />
<br />Organic food is great - and I do everything to bring up my daughter using a healthy - organic - homemade diet. I even learned to bake real bread - like our grandmother's used to. delicious and we all benifit from it. Even my grandfather said - it's like I remembered from childhood!
<br />
<br />But still - in our colder climate - the organic food gets worst in winter - spring and I fell I need to use supplements. Bying food from the so called "ecology shops" does not work here - there are no standards and often the food sold in supermarkets is better then in such shops <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />Fish are very expensive.
<br />That is why I ask about supplementing probiotics (or synbiotics), minerals and omega 3 - esspecially now - when most children and adults are sick.
 
R

Ratatosk

Administrator
Staff member
I would think doing CPT at least twice a day -- more if she has symptoms, would help significantly. DS takes Source CF vitamins twice a day, a supplemental vitamin K once a week, a Vitamin A & E once a day. When Fish Oil became more popular, I asked DS' doctor about it and he indicated that he'd have to take a significant amount to be worthwhile and doubted we'd be able to get that many capsules down DS at his young age.

Good hand washing it important. Or using hand sanitizer if it's available. I wash my hands right away when I get in the house or use hand santizer in the car once I leave the store. If I get a cold, I wash my hands constantly.

I add olive oil to DS' foods. He drinks whole milk with cream mixed with it. Eats lots of nuts & cheese.
 
R

Ratatosk

Administrator
Staff member
I would think doing CPT at least twice a day -- more if she has symptoms, would help significantly. DS takes Source CF vitamins twice a day, a supplemental vitamin K once a week, a Vitamin A & E once a day. When Fish Oil became more popular, I asked DS' doctor about it and he indicated that he'd have to take a significant amount to be worthwhile and doubted we'd be able to get that many capsules down DS at his young age.

Good hand washing it important. Or using hand sanitizer if it's available. I wash my hands right away when I get in the house or use hand santizer in the car once I leave the store. If I get a cold, I wash my hands constantly.

I add olive oil to DS' foods. He drinks whole milk with cream mixed with it. Eats lots of nuts & cheese.
 
R

Ratatosk

Administrator
Staff member
I would think doing CPT at least twice a day -- more if she has symptoms, would help significantly. DS takes Source CF vitamins twice a day, a supplemental vitamin K once a week, a Vitamin A & E once a day. When Fish Oil became more popular, I asked DS' doctor about it and he indicated that he'd have to take a significant amount to be worthwhile and doubted we'd be able to get that many capsules down DS at his young age.
<br />
<br />Good hand washing it important. Or using hand sanitizer if it's available. I wash my hands right away when I get in the house or use hand santizer in the car once I leave the store. If I get a cold, I wash my hands constantly.
<br />
<br />I add olive oil to DS' foods. He drinks whole milk with cream mixed with it. Eats lots of nuts & cheese.
 
H

hmw

New member
Omega3's: the amount of epa and dha in the supplement is what matters most, so generally speaking you need to take a couple per day and the pills are big. You can look into one of the krill oil supps; much smaller and more concentrated in dha & epa if you really want to try omega's but she doesn't swallow big pills. You can also now find vegetable oils, etc that are fortified w/ omega's here in the US; not sure about overseas. The jury is still out on benefits to those with CF, but they have clearly proven health benefits in many other ways, so I give them to my daughter- knowing they are good for her anyway and MAY help her with CF-related inflammation is good enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We use fish oil (rather than flax) that is mercury-free and enteric coated (so it doesn't taste bad.)

I've seen a positive change in Emily's digestion since starting probiotics. She takes a D3 supplement along with her multi (her D & calcium levels were low and have since improved since adding the D; thus far her A, E and K levels are ok.)

I agree with the above that she needs to be getting airway clearance of some kind twice a day when well and more when she's sick to maintain the good health she has now. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<div class="FTQUOTE"><begin quote>I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.</end quote></div>
Honestly, I wouldn't worry much about your country not using visiting nurses/RT's. If they go around to multiple homes every day there would be a very real concern of cross-contamination if they didn't follow impeccable germ-control protocol (which sounds suspect at the hospitals.) Given the choice I'm glad we have the vest- it's then available for use as needed days, nights, weekends, holidays as many times a day that are necessary; and after a rent-to-own period w/insurance, it's now ours, free and clear, with a lifetime warranty. No matter how much you or insurance ever spent on someone to come to your house, you are never 'done' paying for it and I don't know how that would work if your child was sick and needed CPT 4x/day (as is routine for illness), esp in the middle of the night. If you are going to consider the investment/looking into ways to obtain funds, I would lean in the direction of the vest.

I personally think that if you have a way to get one, it would be of benefit- Emily coughs a lot more productively with the vest than she did with CPT, she does her nebs while she's doing it so her treatment sessions are pretty efficient, and in our household anyway we found it easier to be compliant w/ the vest than the other methods we've tried thus far (CPT or Acapella.)
 
H

hmw

New member
Omega3's: the amount of epa and dha in the supplement is what matters most, so generally speaking you need to take a couple per day and the pills are big. You can look into one of the krill oil supps; much smaller and more concentrated in dha & epa if you really want to try omega's but she doesn't swallow big pills. You can also now find vegetable oils, etc that are fortified w/ omega's here in the US; not sure about overseas. The jury is still out on benefits to those with CF, but they have clearly proven health benefits in many other ways, so I give them to my daughter- knowing they are good for her anyway and MAY help her with CF-related inflammation is good enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We use fish oil (rather than flax) that is mercury-free and enteric coated (so it doesn't taste bad.)

I've seen a positive change in Emily's digestion since starting probiotics. She takes a D3 supplement along with her multi (her D & calcium levels were low and have since improved since adding the D; thus far her A, E and K levels are ok.)

I agree with the above that she needs to be getting airway clearance of some kind twice a day when well and more when she's sick to maintain the good health she has now. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<div class="FTQUOTE"><begin quote>I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.</end quote>
Honestly, I wouldn't worry much about your country not using visiting nurses/RT's. If they go around to multiple homes every day there would be a very real concern of cross-contamination if they didn't follow impeccable germ-control protocol (which sounds suspect at the hospitals.) Given the choice I'm glad we have the vest- it's then available for use as needed days, nights, weekends, holidays as many times a day that are necessary; and after a rent-to-own period w/insurance, it's now ours, free and clear, with a lifetime warranty. No matter how much you or insurance ever spent on someone to come to your house, you are never 'done' paying for it and I don't know how that would work if your child was sick and needed CPT 4x/day (as is routine for illness), esp in the middle of the night. If you are going to consider the investment/looking into ways to obtain funds, I would lean in the direction of the vest.

I personally think that if you have a way to get one, it would be of benefit- Emily coughs a lot more productively with the vest than she did with CPT, she does her nebs while she's doing it so her treatment sessions are pretty efficient, and in our household anyway we found it easier to be compliant w/ the vest than the other methods we've tried thus far (CPT or Acapella.)
 
H

hmw

New member
Omega3's: the amount of epa and dha in the supplement is what matters most, so generally speaking you need to take a couple per day and the pills are big. You can look into one of the krill oil supps; much smaller and more concentrated in dha & epa if you really want to try omega's but she doesn't swallow big pills. You can also now find vegetable oils, etc that are fortified w/ omega's here in the US; not sure about overseas. The jury is still out on benefits to those with CF, but they have clearly proven health benefits in many other ways, so I give them to my daughter- knowing they are good for her anyway and MAY help her with CF-related inflammation is good enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We use fish oil (rather than flax) that is mercury-free and enteric coated (so it doesn't taste bad.)
<br />
<br />I've seen a positive change in Emily's digestion since starting probiotics. She takes a D3 supplement along with her multi (her D & calcium levels were low and have since improved since adding the D; thus far her A, E and K levels are ok.)
<br />
<br />I agree with the above that she needs to be getting airway clearance of some kind twice a day when well and more when she's sick to maintain the good health she has now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br /><div class="FTQUOTE"><begin quote>I would have to pay alot of money for someone to come to my house to help with CTP. Like I said - we are behind in health care here.</end quote>
<br />Honestly, I wouldn't worry much about your country not using visiting nurses/RT's. If they go around to multiple homes every day there would be a very real concern of cross-contamination if they didn't follow impeccable germ-control protocol (which sounds suspect at the hospitals.) Given the choice I'm glad we have the vest- it's then available for use as needed days, nights, weekends, holidays as many times a day that are necessary; and after a rent-to-own period w/insurance, it's now ours, free and clear, with a lifetime warranty. No matter how much you or insurance ever spent on someone to come to your house, you are never 'done' paying for it and I don't know how that would work if your child was sick and needed CPT 4x/day (as is routine for illness), esp in the middle of the night. If you are going to consider the investment/looking into ways to obtain funds, I would lean in the direction of the vest.
<br />
<br />I personally think that if you have a way to get one, it would be of benefit- Emily coughs a lot more productively with the vest than she did with CPT, she does her nebs while she's doing it so her treatment sessions are pretty efficient, and in our household anyway we found it easier to be compliant w/ the vest than the other methods we've tried thus far (CPT or Acapella.)
 
A

AleksandraKaczynska

New member
Thank you for sharing your knowledge.
I'll be thinking about the vest then - but now Joanna will have a new sister in 8 weeks <img src="i/expressions/face-icon-small-smile.gif" border="0">
I also am very cautious about those who visit our house and a nurse may carry more germs and bacteria...
Our insurance will not cover the vest- not yet - but it changes. So I'll have to get a sponsor and pay some of it myself. She is too small for Acapella or the Flutter.

I do CPT myself minimum twice a day - it's just that I always wonder what else can I do.

We don't have much choice in hospitals here.... I just have to pray that this will change before we need to visit one. An alternative is to go to Austria or Belgium - but this can only be done if our insurance (national - obligatory) decides to pay for this - usually the cases end up in court.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> so it takes time <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also use hand sanitize handkerchiefs and wash my hand all the time - I also ask all to wash their hand the moment they enter my house. Some people take it as an offence - so usually I have to do alot of explaining.
Asia also exercises three times a week - gymnastics for little children and swimming lessons. She never got sick after and she loves it - she does not attend to kinder garden - I work at home.
Asia does not need to take enzymes to her meals - so I guess she will benefit from omega 3.
I also noticed that synbiotics changed her digestion for better - but I needed the opinion of others.
 
A

AleksandraKaczynska

New member
Thank you for sharing your knowledge.
I'll be thinking about the vest then - but now Joanna will have a new sister in 8 weeks <img src="i/expressions/face-icon-small-smile.gif" border="0">
I also am very cautious about those who visit our house and a nurse may carry more germs and bacteria...
Our insurance will not cover the vest- not yet - but it changes. So I'll have to get a sponsor and pay some of it myself. She is too small for Acapella or the Flutter.

I do CPT myself minimum twice a day - it's just that I always wonder what else can I do.

We don't have much choice in hospitals here.... I just have to pray that this will change before we need to visit one. An alternative is to go to Austria or Belgium - but this can only be done if our insurance (national - obligatory) decides to pay for this - usually the cases end up in court.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> so it takes time <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also use hand sanitize handkerchiefs and wash my hand all the time - I also ask all to wash their hand the moment they enter my house. Some people take it as an offence - so usually I have to do alot of explaining.
Asia also exercises three times a week - gymnastics for little children and swimming lessons. She never got sick after and she loves it - she does not attend to kinder garden - I work at home.
Asia does not need to take enzymes to her meals - so I guess she will benefit from omega 3.
I also noticed that synbiotics changed her digestion for better - but I needed the opinion of others.
 
A

AleksandraKaczynska

New member
Thank you for sharing your knowledge.
<br />I'll be thinking about the vest then - but now Joanna will have a new sister in 8 weeks <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I also am very cautious about those who visit our house and a nurse may carry more germs and bacteria...
<br />Our insurance will not cover the vest- not yet - but it changes. So I'll have to get a sponsor and pay some of it myself. She is too small for Acapella or the Flutter.
<br />
<br />I do CPT myself minimum twice a day - it's just that I always wonder what else can I do.
<br />
<br />We don't have much choice in hospitals here.... I just have to pray that this will change before we need to visit one. An alternative is to go to Austria or Belgium - but this can only be done if our insurance (national - obligatory) decides to pay for this - usually the cases end up in court.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> so it takes time <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I also use hand sanitize handkerchiefs and wash my hand all the time - I also ask all to wash their hand the moment they enter my house. Some people take it as an offence - so usually I have to do alot of explaining.
<br />Asia also exercises three times a week - gymnastics for little children and swimming lessons. She never got sick after and she loves it - she does not attend to kinder garden - I work at home.
<br />Asia does not need to take enzymes to her meals - so I guess she will benefit from omega 3.
<br />I also noticed that synbiotics changed her digestion for better - but I needed the opinion of others.
 
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