tolerance for a 11 month old

[damiensmom]

I gave Damien 3 ounces of boost plus today for the first time. He is almost a year. I want to know if anyone else gives these suppliments to there child at that age. He seemed to be ok and hes taken a nap and played . I dont see any my tummy hurts signs yet and ill watch hes pamper for signs of malobsorption. I want to add cream to hes bottels but i worry about hurting hes liver and giving him gas and all sorts of thngs. any thing i should look out for?

 

[Ratatosk]

I didn't use boost at that age, but on trips would use pediasure.

I seem to recall adding 1/2 to an ounce of cream to DS's bottles of formula when he was 8 months old and from time to time I added some nesquick to one of his bottles for increased calories. His doctor told us to add the cream, basically had told us at 6 months to skip over babyfood and grind up whatever we were having 'cuz baby food was too low in fat and sodium. DS had texture issues so for the most part we still gave him baby food, but doctored it up with butter and some salt. He also ate a LOT of yo-baby yogurt.

Things to watch for would be loose stools -- greasier, might malabsorption. When we started adding cream to the bottles, I think we gradually upped the enzymes.

 

[damiensmom]

Great I really want to add cream on the regular. Damiens stools are always loose Hes doc told me pregestimil does that .Watch for large ones and crisco like drops in pamper. I gave him rice dream a fewm times per reading a reply to my topic on Damiens weight. great vitamins in that same cals as formula a little less. We love yogurt.

 

[Ratatosk]

DS was on pregistimil for about a week and HATED it -- would scream and try to escape whenever he saw the bottle. We switched to regular formula (infamil lipil) shortly afterwards -- but I seem to recall poo the color of green grass and one of the nurses saying, yep, normal poop. Wasn't like any poop I've ever seen!

I wasconstantly trying to figure out what NORMAL poop was supposed to look like. DS really didn't have normal looking stools until he was thru with formula -- 'course when we switched to whole milk with cream and/or carnation instant breakfast, then we had the other extreme. Constipation.

Think the key is trying one thing at a time -- not changing too many things at once in case there is a reaction. We usually upped his enzymes half a capsule if the poo tended to not be very well formed and smelled like feta cheese.

DS is 3 and I noticed for the first time EVER a globule of oil in the toilet. He'd been munching on a few potato chips on the way home from preschool and then had spagettios with some olive oil in it for supper.

 

[JRPandTJP]

Is your son having weight issues? I ask because I have found that sometimes tryng to add too many calories before a year can backfire. Dairy is very difficult to digest for little tummies and is not a recommended "first food" until after they are a year old (La Leche recommendation) and then in moderation. Obviously, he is okay with it for the most part since he tolerates the formula. However, the formula your mentioned does have the predigested proteins and fats so it isn't as difficult for him to break down (theoritically). Straight dairy, along with the corn syrup and artificial flavors in boost and CIB would concern me, not to mention the protein levels in these drinks can be too high for their little metabolisims.

I think it is wise to ask what is the recommended protein (in grams) per meal/feeding for under a year. This should help with your decision to give boost and CIB. The body can only do so much and you'll see alot of waste (literally in stool issues) when too much fat and protein are given per meal (even with increased enzymes). We saw this with Ben whenever we went beyond 22 calories per ounce of formula (when he was supplemented during illness/hospital stay) and when I was using too much soy products per meal/all day.

I really think just by providing a good well-rounded balance of protein, complex carbs, and omega3 fats you can provide the calories you need to give your baby. Formula or breastmilk should still be the primary source of calories at this age.

This is just from my experience... Jody

 

[JRPandTJP]

Quote from Earth's Best site:

"Can you feed your baby too much protein? My baby is 9 months old and weighs 21 pounds. She gets around 24 grams of protein a day - is that too much?

A baby can get too much protein if it is crowding out other, equally important foods. Plus, digesting protein is hard on the kidneys and too much can be taxing on their system, requiring an increase in the amount of fluids they need to help dilute the waste products of protein metabolism. The recommended intake of protein for a 7 to 12 month old baby is 13.5 grams (a day). While there is no upper level at which protein is deemed toxic, getting much more than the 13.5 grams does mean a baby's distribution of nutrients is apt to be unbalanced and the baby risks not getting other essential nutrients. I would recommend you look at your baby's diet to see how well balanced it is, and then make the appropriate adjustments to bring the protein level down somewhat and adding in other foods as necessary"

There is other information out there as well. If you add the 20% CFers are suppose to add you get a daily intake of 16.2 grams of protein. CIB has 23grams of protein!! Boost has 14 grams!! This is above or around the daily total.

Just thought I'd pass this along.

 

[fourkidsmom]

We started our son on pediasure at 1 year old. He didn't have any problems and he seems to have more bowel problems with his cf.

fourkidsmom

 

[amber682]

My son was put on pregestimil at 4 mos. old at time of diagnosis
but hated it and refused to eat more than 2 oz. so he was put back
on his reg  formula, but his dietician told us to add
more powder to make it 28 calorie instead of 20 and to use enzymes.
He went from the 5th percentile before diagnosis to the 50th
percentile a few months later. At one year instead of switching him
to whole milk he was put on pediasure. Six months later, he now
drinks half whole milk, half pediasure and is just above the 50th
percentile. Just thought I'd share my experience with nutritional
supplementation.<img src="i/expressions/face-icon-small-smile.gif" border="0">   

 

[Ratatosk]

We struggled and argued with the dietician over the pregistimil because prior to DS's diagnosis he LIKED regular formula. Dietician tried to tell us that babies don't have developed taste buds and don't know any better, but in the next breath told us that he wouldn't like ADEKs because of the taste. Huh?. All I knew is that when we came at him with that bottle he screamed and struggled and would only eat a small amount. The dietician also tried to tell us that DS was slow and didn't have a suck reflex. I marched over to the fridge in the NICU, poured myself a shot of formula and took a swig. OMIGOSH! That stuff tastes like vomit and the way roadkill smells. DH's turn -- bleah! Marched down to the neonatologist and said, enough, we want him on regular formula, we KNOW he can thrive on it. CF doctor said to feed DS whatever he'll eat --- we WANT him to eat, so if he'll eat that -- give it too him! Switched to infamil and he started gaining weight. We did end up having to switch to higher calorie to play catch up, but it was still regular formula with more powder to water ratio. L

 

[julie]

You have to keep in mind that the recommendations from Earth's Best site are for a child who DOES NOT have Cystic fibrosis. All that caloric and protein intake stuff goes out the window for a child who has CF AND malabsorption/pancreatic insufficency problems.

Not every CFer is suppose to get 20% extra. I don't mean to knock down what you've posted, but the dietary intakes differ from CFer to CFer. My husband requires 150% (YES you read that right) of what someone his age, weight and height needs to take in. He needs 6400 calories and 300grams of protein to maintain his weight, and it works for him. He does however, have to be very vigilant about his water intake, nearly a gallon a day. Some CFers have very sever digestive problems, like my DH does and some have mild to moderate... there is no "across the board" percentage, even for infants.

As far as the boost versus pediasure, I would honestly talk with a CF dietician about it. I do believe that pediasure is more concentrated in some vitamins geared towards growing little bodies, and has some additional "broken down" nutrients than Boost does but I'm not for sure on that. I definately won't do any harm in moderation, especially considering there is NO dairy in Boost or Ensure, but he might recieve some better nutrients for this time period in his life with the pediasure.

 

[amber682]

The good thing about pediasure, I think, is that it's WIC-approved.
Vinny drinks about 4 a day at no cost to me. It says on the bottle
that it's complete balanced nutrition and that it can be used as
the sole source of nutrition.<br>
    To Liza, my pregestimil story is very
similar to yours. I thought it tasted like when you leave an
aspirin in your mouth for to long! (nasty and bitter!) My son was
drinking reg formula with no problem what-so-ever. When he was dx
they switched him and put him on enzymes. He started refusing to
eat and lost a lot of weight. I was told that since he was only 3-4
mos. old he shouldn't mind. I was like, he's been on sweet tasting
reg formula for almost 4 mos. and you think he will just happily
switch to this bitter stuff? I kept a record of how many oz.
he drank.  Then at a clinic visit I asked if I could switch
him back to reg. formula for just a few days and see if his eating
improved. The day I switched he almost doubled his formula intake.
By the next day he was up to his usual amount before dx. The dr.
let me get rid of that nasty pre-digested crap! He had been put on
enzymes anyway, so why make him drink that pre-digested
formula.<br>
    My gut kept telling me he didn't like the
taste and that's why he wouldn't drink it, but the dr. and nurses
said that wasn't it. I turned out to be right after weeks of trying
to force him to drink that stuff. So, like everyone on this site
always says, Go with your gut!<br>
  

 

[damiensmom]

So intresting , Damien has no problem with pregestimil 27 cals 1/4 cup formula to every 5 ounces. I am not at all replacing form iula with boost. I want to give him one bottle a day an extra 360 cals. Damien has severe pancratic insufficency mutation (2183 aaag) and given that I have to agree with julie on the protien and cal ratio for cfers. Damien will be a year in a month.And I have clinic in 2 weeks and I am having to deal with there wanting the tube

 

[JRPandTJP]

I was trying to show that the average protein recommendation for a 7-12 month old with the addition of 20% (since this is the average we as moms of CF babies are told to shoot for unless it isn't working for weight gain goals) is 16.2 grams/day. This is how they figure it out so I don't see the issue here. This might be a good starting point, along with the advice of a nutritionist, to determine how much is appropriate for this age. An adult male who has been dealing with CF for 20+ years is not comparable to an 11 month old.

If a child isn't having weight issues and is given too much protein, especially in a form that is difficult to digest, it can and does tax their system (especially the kidneys). There are medical studies that show this and CF doesn't have anything to do with it... it is how the body works. I believe we all, myself included, can do much of a good thing in an effort to feel better about weight gain. I know I had myself spinning my wheels many a time to "get more into him" when all it did was make him poop more (even with increased enzymes). It is a balancing act, one only a mom can observe and adjust to. We all have to be aware and try things, knowing our little ones are all different.

These drinks were not developed specially for a baby (not much less a CF baby), they are based on adult vitamin and protein requirements. Unless a qualified nutritionist or doctor is saying this level of protein, in addition to the formula or breastmilk the infant is receiving, is appropriate, I would not do it. THis is my feelings. Toddlers and above, different story.

 

[JRPandTJP]

Aria, in your opinion, is Damien not growing or gaining at this time? What recommendations have they made to you?

I know how stressful the weight thing is...Ben was in the 5-10% for many months in the beginning, but he was following a normal growth and development curve. By a year he began taking off with more and more foods and when the drive to walk slowed down. He has been in the 50% since about 18months and doesn't take any of these drinks (I do other things though). He also has severe pancreatic insufficiency and can't digest anything without enzymes. I'd say he is at a medium level of enzymes, needing 2 Creon 10 at every meal, 1 with small snacks.

We still get freaked out when he slows down. It is very hard and I just wanted you to know I understand the pressure you feel you are under before appointments. I always get nervous and wonder if this time his weight won't be good enough. I try to remind myself that I am the authority on his well-being, they are there to help me if I feel there is an issue. If you feel he is well and thriving, you can always get a second opinion (or more) on the g-tube. If it will really help him and he isn't doing well, then it may also relieve your mind to know this option is there for him. We are always doing our very best for our children...even when they need medical intervention. Just wanted you to know I understand the emotional aspect of what you are bringing up. Jody

 

[JRPandTJP]

sorry, last post I promise. Came across this study about supplements in CF and thought it was interesting. Wonder what you all make of it...very surprising to me.

<a target=_blank class=ftalternatingbarlinklarge href="http://bmj.bmjjournals.com/cgi/content/full/bmj;332/7542/632
">http://bmj.bmjjournals.com/cgi...full/bmj;332/7542/632
</a>
I so wish there was more long term studies about nutrition for us parents. We really have to wing it and use our guts for the most part.

 

[amber682]

I think it eases my mind just knowing Vinny's drinking a few
pediasures a day. Although I do have to make sure he gets one
<i>after</i> eating, or it fills him up and he won't eat much.

 

[damiensmom]

I worry about it hurting hes liver that is why i wrote the post. Damien weighed 3 pounds when was born 2 months early and then got phumonia at four months old. I personally think hes doing well. he has never gained less than a pound and a half a month. I weghed him a week ago he weighs 17 pounds hes 11 months old hell be a year september 1st. he hasnt been sick since the pheumona. I also feel that giving him to much will only make him malabsorb and hurt hes system he tekes actigall for hes liver already.I didnt really like hes pamper this morning so I will not give him boost. Ill try a pedisure. I think Ill end up sticking with a rice dream for vitamins. And cream the bottle for extra cals. I had no idea about protien being a factor. But Regardless I didnt like the pamper. And more on how I feel on Damien, He is a happy smart baby I think he looks great I know in a few months hell move up on the growth curve as he moves into toodler hood if you will. I will not sign consent to a feeding tube not at this time. that is where i stand on that . But yes I feel the pressure.

 

[damiensmom]

Oh if you go to the photo gallery on yhe home page you can see Damien just hold your cursor on the pics and it gives you a name,Cause im to lame to attach a pic to a post hahaha