Need some advice on 6 months old cf daughter

S

sweetninis

New member
hello

<strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">My daughter is almost 6 months old she is cf f508 positve diagnosed at 2 months if anyone here could guide me about what should i give her to eat that could make her healthy she was 3.4 kg at birth and after 6 months she is 3.6 kg still.I am giving her 1tsp of lentil and 1tsp of rice finely crushed and made in water.she eats 100ml a day.</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">her medicines are as follows:</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">1.CREON CAPSULES 2500units twice a day</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">2.Abidec 10drops once a day</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">3.nabs every 6 hourly with normal saline 2ml</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">4.sevenseas cod oil 1ml alternate days</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">5.Suctioning and little chest PT once a day (to get rid of secretions)</strong>

thanks
 
S

sweetninis

New member
hello

<strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">My daughter is almost 6 months old she is cf f508 positve diagnosed at 2 months if anyone here could guide me about what should i give her to eat that could make her healthy she was 3.4 kg at birth and after 6 months she is 3.6 kg still.I am giving her 1tsp of lentil and 1tsp of rice finely crushed and made in water.she eats 100ml a day.</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">her medicines are as follows:</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">1.CREON CAPSULES 2500units twice a day</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">2.Abidec 10drops once a day</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">3.nabs every 6 hourly with normal saline 2ml</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">4.sevenseas cod oil 1ml alternate days</strong><strong><span style="font-size: small; font-family: comic sans ms,sans-serif;">5.Suctioning and little chest PT once a day (to get rid of secretions)</strong>

thanks
 
K

kitomd21

New member
How many meals is she eating/day? I assume she's primarily on formula or breast milk? Is she seen at an accredited CF center?
 
K

kitomd21

New member
How many meals is she eating/day? I assume she's primarily on formula or breast milk? Is she seen at an accredited CF center?
 
K

Kaethe108

Guest
Hi sweetninis! First: Welcome to the Forum! You will find great people and help here! My daughter is now 10 months old, diagnosed with six weeks of age; so we went through the same process like you. I hope I can help. What is most important is: it does not matter how much your daughter will eat, if the Creon is nor given correctly, she will NOT gain weight! So this is the most important!!! You write that she gets creon twice a day. This I don't understand. Creon is given DURING a meal. It must reach the stomach together with the food. Not before and not after! Can you please write down exactly what and how often your daughter is eating? Why does she eat lentils and rice? With six months she should still be mainly on breast feeding or formula milk. With four to five months you can start giving puree (vegetables, potatoes, meat etc.). Where do you live? Can you buy ready made baby food in glases? I really want to help, because your daughter needs to gain weight! Our daughter did not gain weight in the first six months. Then we started the creon (we have an excellent baby food expert that guided us!) and now she is really healthy, even has some little "baby fat". She is normal size and weight for her age. Please also write if you are seeing a CF Center! All the best, Kaethe ;o)
EDIT:
I just read that you live in Pakistan?
 
K

Kaethe108

Guest
Hi sweetninis! First: Welcome to the Forum! You will find great people and help here! My daughter is now 10 months old, diagnosed with six weeks of age; so we went through the same process like you. I hope I can help. What is most important is: it does not matter how much your daughter will eat, if the Creon is nor given correctly, she will NOT gain weight! So this is the most important!!! You write that she gets creon twice a day. This I don't understand. Creon is given DURING a meal. It must reach the stomach together with the food. Not before and not after! Can you please write down exactly what and how often your daughter is eating? Why does she eat lentils and rice? With six months she should still be mainly on breast feeding or formula milk. With four to five months you can start giving puree (vegetables, potatoes, meat etc.). Where do you live? Can you buy ready made baby food in glases? I really want to help, because your daughter needs to gain weight! Our daughter did not gain weight in the first six months. Then we started the creon (we have an excellent baby food expert that guided us!) and now she is really healthy, even has some little "baby fat". She is normal size and weight for her age. Please also write if you are seeing a CF Center! All the best, Kaethe ;o)
EDIT:
I just read that you live in Pakistan?
 
S

sweetninis

New member
She is on breastfeed and eats rice and lentil 2 times a day appx 100 ml.
She's been under cf treatment in a cf hospital here.
 
S

sweetninis

New member
She is on breastfeed and eats rice and lentil 2 times a day appx 100 ml.
She's been under cf treatment in a cf hospital here.
 
S

sweetninis

New member
Rice and lentil mixture or puree you can say that's what my nutritionst said and yes the creon capsule I give her along with rice mixture
 
S

sweetninis

New member
Rice and lentil mixture or puree you can say that's what my nutritionst said and yes the creon capsule I give her along with rice mixture
 
K

Kaethe108

Guest
With Creon it is important to find out <span style="text-decoration: underline;">how much she needs with each gram of fat! This you have to find out! You always have to calculate how much fat is in a meal and the give the right dosis of creon! For example our daughter needs 2500 "units" with each gramm of fat. I don't think that your daughter gets enough creon. You will know that you have the right dosis of Creon when her stools are not oily anymore. And normally she would have two to three stools or less each day. If she has more and the stools are oily, then you need more Creon with each meal. <strong>How do her stools look like?</strong> With breastfeeding I can not help so much, because my daughter drank formula milk, which was easy to calculate. But I guess that it has kind of the same amount of fat as breastmilk. With one bottle (240ml) of milk we give 25000 (!) units of Creon. <strong>What does your nutritionist say why she does not gain any weight?</strong> I don't see a reason why your daughter should not eat "normal" food? With six months my daughter ate puree from all kind of vegetables and meat (for example carrots, potatoes and poultry or pumpkin, noodles and beef or carrots, rice and fish...). If you can buy this food you can just boil it and mix it together so that it will be a puree. To <strong>add more calories</strong> it is good to add one tablespoon of rapeseed oil or some butter or some cream. Also important: <strong>She needs extra salt</strong>! 1 gramm each day, evenly spread over the meals. Can you buy milk and semolina? This makes a nice mash for the evening. I find it dificult to help because we don't know how it is in your country. What you can buy etc. Please give us more information. All the best!
EDIT:
Sorry, maybe I did not write it clearly enough: <strong>Your daughter needs Creon everytime you are breastfeeding!</strong>
 
K

Kaethe108

Guest
With Creon it is important to find out <span style="text-decoration: underline;">how much she needs with each gram of fat! This you have to find out! You always have to calculate how much fat is in a meal and the give the right dosis of creon! For example our daughter needs 2500 "units" with each gramm of fat. I don't think that your daughter gets enough creon. You will know that you have the right dosis of Creon when her stools are not oily anymore. And normally she would have two to three stools or less each day. If she has more and the stools are oily, then you need more Creon with each meal. <strong>How do her stools look like?</strong> With breastfeeding I can not help so much, because my daughter drank formula milk, which was easy to calculate. But I guess that it has kind of the same amount of fat as breastmilk. With one bottle (240ml) of milk we give 25000 (!) units of Creon. <strong>What does your nutritionist say why she does not gain any weight?</strong> I don't see a reason why your daughter should not eat "normal" food? With six months my daughter ate puree from all kind of vegetables and meat (for example carrots, potatoes and poultry or pumpkin, noodles and beef or carrots, rice and fish...). If you can buy this food you can just boil it and mix it together so that it will be a puree. To <strong>add more calories</strong> it is good to add one tablespoon of rapeseed oil or some butter or some cream. Also important: <strong>She needs extra salt</strong>! 1 gramm each day, evenly spread over the meals. Can you buy milk and semolina? This makes a nice mash for the evening. I find it dificult to help because we don't know how it is in your country. What you can buy etc. Please give us more information. All the best!
EDIT:
Sorry, maybe I did not write it clearly enough: <strong>Your daughter needs Creon everytime you are breastfeeding!</strong>
 
R

Ratatosk

Administrator
Staff member
DS too had enzymes whenever he ate -- he got 3 1/2 Pancrease MT4s with each bottle. He spent 6 weeks in the hospital after he was born and when we got him home his doctors told us to feed him every 3 hours. And he got fortified, extra calorie formula. At 6 months we started feeding him regular food - whole milk yogurt, ground up food with butter and olive oil. Based on his output -- stools or the amount of fat we gave him, we would increase the amount of enzymes accordingly.

As for CPT, we did -- still do -- treatments 3 times a day. More if he is sick. Our doctors indicated 2 was the minimum and more is better.
 
R

Ratatosk

Administrator
Staff member
DS too had enzymes whenever he ate -- he got 3 1/2 Pancrease MT4s with each bottle. He spent 6 weeks in the hospital after he was born and when we got him home his doctors told us to feed him every 3 hours. And he got fortified, extra calorie formula. At 6 months we started feeding him regular food - whole milk yogurt, ground up food with butter and olive oil. Based on his output -- stools or the amount of fat we gave him, we would increase the amount of enzymes accordingly.

As for CPT, we did -- still do -- treatments 3 times a day. More if he is sick. Our doctors indicated 2 was the minimum and more is better.
 
A

Aboveallislove

Super Moderator
I'm am so sorry for your struggles with your precious baby's weight. I know how scary it is and how lost you must feel. A few thoughts: It sounds like you are not doing enzymes with breast feedings. If the doctors have her taking enzymes, she should be taking both for "food" and for "nursing." Nursing is a little harder if she nurses at will which could be every 20 minutes etc. The enzymes SHOULD last up to 4 hours, but my nutritionist said to give if more than an hour had past. BUT be very careful it is dangerous to give too many enzymes. So you want to talk to the doctors to know exactly how many you can give at one time and within 24 hours. What I did was if my son was just kinda "grazing" i.e., nursing on and off, I would NOT give him more even if more than an hour had past. But if he nursed and then 2 hours later wanted to nurse solidly again I would. AGAIN PLEASE DON'T CHANGE THE ENZYMES WITHOUT TALKING TO YOUR DOCTOR. But it might be an "easy" fix of she just needs enzmes before nursing. IF you are giving her enzymes before nursing, it might be that you need to supplement with formula. I nursed AND pumped and put fomrula in the breastmilk to get more calories. The longer you nurse the better in general, but at a certain point if she is not getting the calories that is more important in my opinion. Please write back and I'll help in any way i can--I nursed and nursed/pumped and then pumped so have a feel for the challenges here. Please please please let me know what I can help with.
 
A

Aboveallislove

Super Moderator
I'm am so sorry for your struggles with your precious baby's weight. I know how scary it is and how lost you must feel. A few thoughts: It sounds like you are not doing enzymes with breast feedings. If the doctors have her taking enzymes, she should be taking both for "food" and for "nursing." Nursing is a little harder if she nurses at will which could be every 20 minutes etc. The enzymes SHOULD last up to 4 hours, but my nutritionist said to give if more than an hour had past. BUT be very careful it is dangerous to give too many enzymes. So you want to talk to the doctors to know exactly how many you can give at one time and within 24 hours. What I did was if my son was just kinda "grazing" i.e., nursing on and off, I would NOT give him more even if more than an hour had past. But if he nursed and then 2 hours later wanted to nurse solidly again I would. AGAIN PLEASE DON'T CHANGE THE ENZYMES WITHOUT TALKING TO YOUR DOCTOR. But it might be an "easy" fix of she just needs enzmes before nursing. IF you are giving her enzymes before nursing, it might be that you need to supplement with formula. I nursed AND pumped and put fomrula in the breastmilk to get more calories. The longer you nurse the better in general, but at a certain point if she is not getting the calories that is more important in my opinion. Please write back and I'll help in any way i can--I nursed and nursed/pumped and then pumped so have a feel for the challenges here. Please please please let me know what I can help with.
 
S

sweetninis

New member
She does 3 or sometimes 4 stools a day and they r thick yellow pasty type but very fatty and very much stick together not flowing out of the diaper.
Does more stools a day means she needs more enzymes?
 
S

sweetninis

New member
She does 3 or sometimes 4 stools a day and they r thick yellow pasty type but very fatty and very much stick together not flowing out of the diaper.
Does more stools a day means she needs more enzymes?
 
K

Kaethe108

Guest
She Needs Enzyms with the milk!!
Without Enzymes she cannot Digest the Food!

To be honest:
I would stop breastfeeding and change to (if possible High calorie) formula milk. Like this you can Control the amount of calories she gets and it is easier to calculate the necessary creon.

Please Talk to your cf doctor again!
If you want you can send me your Email and it will be easier to Write and hopefully help!
 
K

Kaethe108

Guest
She Needs Enzyms with the milk!!
Without Enzymes she cannot Digest the Food!

To be honest:
I would stop breastfeeding and change to (if possible High calorie) formula milk. Like this you can Control the amount of calories she gets and it is easier to calculate the necessary creon.

Please Talk to your cf doctor again!
If you want you can send me your Email and it will be easier to Write and hopefully help!
 
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