weight Advice Please.

jessica1114

New member
Madison went to her CF appointment yesterday and they said she
isn't gaining enough weight. She gain 1.3 lbs since last time she
was there.. I don't think that is bad. She is 15 months and she
only weighed 5lbs 10 ounces when she was born. She is 21.3 lbs now.
What do u guys think.. They really got me upset when they said
that..
 

NoExcuses

New member
weight is becomming a larger issue for CF patients because there is a strong correlation between BMI and lung function.

I would put her on the Starbucks diet early..... all the people I see at that place are fat. 800 calories in a large frappuccino <img src="i/expressions/face-icon-small-smile.gif" border="0"> That wil do the trick.
 

ehtansky21

New member
The last time Ethan Sky saw his nutritionist, she had some new research that changed a lot of how they are now looking at his growth...
She said now they simply want to see that they are at or above the 50th percentile for their height vs weight.
Hope this helps!!
melissa
 

EnergyGal

New member
I make her some shakes that are filled with healthy ingredients. When drinking high calorie drinks she will gain weight. If a child with cf is slightly underweight they try and encourage the family to increase the calorie intake. Summer time there is more activity and it is hot outside so you are burning more calories due to the stress from the heat. It is wise to increase her intake of calories.
 

JRPandTJP

New member
This can be a tough one in my opinion because we are all different, have different growth patterns (times we do and times we don't), some kids are small no matter what they eat, some are big and don't eat much differently than a sibling. The idea that our CFers "should be in the 50%" is really quite limited in my opinion. How does anyone just slam someone into the "perfect" weight percentile and say okay now we can relax they will have healthier lungs. Study, smuddy, if the child is eating well, growing & gaining well (reflects the growth curve), and is healthy, why freak out? I just wonder how many kids end up on g-tubes because the 30% was deamed unacceptable? I am all for trying to do more with food and added calories, but I just don't agree with the "magic" percentile theory.

Does her pediatrician/family doctor think her growth curve is good? What percentile is she in? I have found they can balance the CF docs a little bit and ease your mind since they see kids with all types of issues and healthy kids who are small too. Also, the growth charts aren't perfect...in fact the WHO is changing them to reflect breastfed children with much more diversity in ethnicity. Current ones are based on mostly bottlefed, american/caucasian babies...so it could all change anyways. It is a model not a science.

I also agree with smoothies and high calorie drinks as a way to add calories to the day. Do a search for toddler eating issues or adding calories in the search engine on this site and you'll find soem threads with alot of recipes and smoothie ideas from all the moms of toddlers on here. I'm sure others are sick of me saying this, but probiotics help in digestion and GSH has been know to help in weight gain as well. Our 2 year old takes both daily.

I think Ben might have been around that weight at 15 months too. He is 27-28lbs now @ 2.

Warmly,
Jody
 

amber682

New member
When my son was that old he weighed about 22 lbs. but had slowed
down putting on weight some. The doc was not greatly concerned, but
did up his enzyme dosage from 2 creon 10 to 3 creon 10. I'm not
sure if thats just according to how much he weighs, or because he
had slowed down gaining weight. The pediatrician told me that
weight gain tends to slow a little around that time due to all of
the energy the child is now using with playing and running around,
but I don't know if all dr's would agree. He currently weighs
about 26 lbs. at 18 mos old, and he is pretty chubby. I call
it his buddha belly. <img src="i/expressions/face-icon-small-happy.gif" border="0"> <br>
 

letefk

New member
I just posted elsewhere that my youngest, who has tested as pancreatic sufficient and so is not on enzymes, is 23 months and 24 pounds. And that puts her at a better BMI than she has had for a while, but nowhere near the 50th. At one point, she was about the 2nd percentile. She went for about 7 months without gaining a pound. Then she put on 4 pounds in 3 months. Go figure.

What we focus on in the overall trend in her BMI. Is it heading up? If so, then great. We keep working on it. If it is heading down, then we start to watch more carefully and supplement her foods more aggressively. But the others are right; at this age, a child grows and gains erratically and at his or her own pace.

We do everything we are supposed to with adding calories. We put extra pats of butter on everything... she LOVES it, and it has helped pack more calories and fat into every bite. Our nutritionist recommended dried fruit once they could chew well enough, as that is a great source of lots of calories that don't fill you up. It has helped, and my oldest has a BMI above the 50th, but the little one is still, well, really little. It takes time, and it takes perspective to reassure yourself that you are doing what you can do.

In the end, remember that we can't MAKE a toddler eat more food than they want to eat. All we can do is give them high-calorie, healthy food options. Sometimes those in the medical fields forget what it is like to live with this every day. They forget that when they say your child has not gained enough, we hear we haven't done enough, and that that message hurts like hell when you are doing everything you can to give your child the best outcome you can.
 

damiensmom

New member
I have been researching feeding tubes, fev 1 , B.M.I , nutrition, failure to thrive,gastroesphogal reflux, nutritional failure and a few others I have learned that a pound to a pound and a half is what is expected of a child with out cf to gain per month and to have tripled there birth weight by year 1. It seems we are pressured to do so much more and my babys pancrese doesnt work. Yet we have gained every month and we stay around a pound and half (GIVE OR TAKE). I think the weight to height ratio is better. I personaly will never strive for the 50%. I also have read up and I have learned alot I understand why the docs are so aggresive with weight to lung function but on the other hand I also see all the problems that trying and obtaining that weight bring. I understand your being angry at the words that are said they hurt. I have been hearing them.A lot of reading on feeding tubes and the above subjects made me feel better about my position and standing on the weight subject. And helped me to understand the medical point of veiw. God Bless
 

dyza

New member
our boy is coming up to 14 months and he was 21lbs 10oz at his last clinic last month. They are more than happy with his weight gain, and realise that our son dosen't have pancreatic issues to deal with. I think the weight seems fine to me, the doctors told us way back that it is a good idea to try and have your kids as overweight as posssible, within reason, to help them if and when they get unwell
 

Momofsix

New member
I need some help too! Brandon age 13 is on creon 20 and when he
came to me a week ago he weighed 85 pounds  he only weighed
34pounds   2 years ago before children services stepped
in. anyway he just won't eat!!!!!!!!!!!!!!!! Although today he
asked me for french toast for breakfast.  i made him eat one
piece yesterday morning because he said he didn't like it  he
asked for 2 today, ate one and some bacon I will take that
 anyway i noticed the dried fruit idea   like papaya
and such??? he eats chicken, mac and cheese and potatoes
 drinks some ensure lots of vitamin d milk with nesquik,
ovaltine and such.... I am afraid he isn't going to eat enough lose
weight and then taken from me Help!!!!!! he is in the country and
running with our dog ALL the time very active!
 

karon72

New member
Erin is going to get a G tube next week. We have battled with her weight issues since she was colonized with her first pseudomona. She was breast fed and plump, but then had her first bout with a cf flareup. She lost a good amount of weight. When she was two and kind of little (well below the 50%), she had another flare-up, one that kind of lingered on but she didn't need to go into the hospital. She lost 3 lbs. Then she was hospitalized when she was 4 and lost weight quickly. She looks healthy and for the most part just looks tiny. My husband and I were completely against the tube at first. Trying everything to get her weight up. She has to eat soooooooooooo much and it just gets tiresome for her. We just saw how fast the weight comes off of her & want to give her some room to lose when she gets sick. Because that is the last thing that she gets back...her appetite. I know I am not supposed to compare her to others, but she has this one friend who is exactly her age (within a month), is small and low on the growth chart, too. Her friend is so much bigger than Erin, she is just thicker but their weight is within a few pounds. I just see where Erin needs to gain weight.

We have spoke with a few parents that decided on tube and were very pleased with it. I will keep you all posted on her weight.

The only thing that helped Erin gain weight during the past four years was night feedings. We started to wake her up and feed her some milk. She didn't like it, but gained like 6 pounds between visits. But, she had a flareup and lost it & does not like to wake up and eat <img src="i/expressions/face-icon-small-smile.gif" border="0">. When we added half & half to her milk and tons of butter, it just seemed like it hurt her tummy, even with increased enzymes. She eats a very high calorie diet anyway, so the added just seemed to take her over the edge.
 

love4josh

New member
my son is 13 and two weeks ago he weighed 60 lbs.  he doesn't
have much of an appetite, never has.  His weight has been an
on going issue since he was dx w/cf  at 4 mos. old.  We
have done everything the docs and nutritionists suggested all these
years.  our experience w/all kinds of high cal. drinks is that
they rob him of his appetite.  he takes 3 creon 20 with meals.
 i recently told the docs and nutritionist that we need to
look at things from a different angle.  they don't agree and
still suggest stuffing him with calories.<br>
josh was taking in 3500 - 4000 cals. a day, just one month ago, it
made him sick to his stomach, he didn't gain any weight.  i
found some info. on this site and many others and started him on
lecithin 500mg 1x a day, taurine 250 mg 1x a day, nac 600 1x a day,
josh has gained 4 lbs in 6 days.  it is too soon to know if it
is because of these supplements but the only other time he has
gained that much in a short period of time was when he was on
prednisone (steroid).  in addition to this i reduce his creon
20 to 2 with meals. he is only taking in 1600 - 2200 cals per day
depending on how hot it is outside.<br>
<br>
lecithin helps the body break down and absorb fats.<br>
taurine does the same and helps regulate sugars.<br>
nac helps the body produce glutathione which seems to have
increased his appetite.<br>
<br>
again it is too soon to know if it is the changes we've made but
i'm continuing with it.  his docs have shot down my even
discussing these forms of supplements in the past, so they do not
know yet that we are doing this.  it is working for others
w/cf and malabsorbtion issues, there are no side effects of these
supplements except for nac but you would have to take a huge amount
for it to hurt you in any way.  they do not react badly with
any other meds.<br>
i wouldn't do this before because the docs weren't for it but after
a lot of reading articles, studies,  and speaking to others
w/cf we decided to try it.
 

EnergyGal

New member
Sounds like you are a very smart Mother. I am happy for you and your Son that he has gained weight the healthy way.
 

JRPandTJP

New member
I am with you 100% and I think it is appauling that the medical community can even ignore supplements and nutrition the way they do. This is our children here and to poo poo it just makes me boil. There is more to what we put into our bodies than meets the eye. Asian medical sciences (which are 5000+years old) demonstrate this quite well. I will not sit back and wait for them to tell me GSH works for my son or that eating the right combination of foods reduces inflamation and support his body to gain weight and keeps his lungs healthy.

It is not that these things couldn't be studied, it just isn't, because natural therapies can't be patoned (sp?) and marketed exclusively. This is my opinion, but one I think many CF parents hold after doing their own research on behalf of their children.

Good for you and I would love to hear of your success. Have you tried oral and/or inhaled GSH. We saw a large increase in weight gain and good appetite after we started that as well. We also use probiotics (greens powder and acidophilous) and a more complete vitamin than vitamax. I have also read some of the cases you speak of on total turn arounds using supplements and food. Did you see the one study that showed the protein supplement drinks do not add weight? I have it if you want it. You can PM me.

Warmly,
Jody
 

CFTwins

New member
Jessica 1114 --

I hear ya! My twins are about the same age and born at aroun 4lb. Berne is closer to your daughter almost 22lb... and the docs are pretty happy, but want us to keep pushing it. I'd ask your docs what the target is, and why. I think 50% is reasonable for our kids... both me and their dad are above average-sized people and it seems to reason, even with CF that they shouldn't be on the low, low, low end of the chart.

On the other hand. Maren is only 17lb... I'm sure that they will want a feeding tube soon. She is allergic to milk, eggs and peanuts -- it's a pain, isn't it? We use Bright Beginnings Soy Drink (it's like Pediasure), have you tried that? Any other non-milk tricks?

It feels so defeating doesn't it? When you work hard at it and the results don't measure up.

Best wishes.
Stacy
 

folione

New member
Just wanted to add my empathy to the list: Our son is 3 now and had a struggle to get to the 50% mark - and we too endured a nutritionist who sounded pleased at one visit then dismal the next about growth progress. I eventually just had to sit down and tell the nutritionist that she was driving us crazy...that talk led her to take a longer view of things before sending up warning flares. It's emotionally difficult enough without feeling scolded for a tot behaving like a tot and not always wanting to eat.

Something else I did not see mentioned by anyone is the reliability of the weight checks at that age. Our son hated getting on the scale and thrashed and wriggled all over the place. It made the weights not quite reliable, which we also pointed out to the Dr. and Nutritionist. When you're looking to detect a change of 20 ounces a difference of 4 or 5oz either way due to a squirmy tot can make the difference between a happy and worried nutritionist.....
 

Ratatosk

Administrator
Staff member
Our dietician used to drive us nuts by telling us that DS needed to be drinking so many ounces of formula per day, which wasn't happening. He was in the 50th percentile and was consuming adequate calories -- we increased the powder to water ratio, but she still focused on the amount. Which stressed me out so much, I'd cry 'cuz he wouldn't eat, he'd cry, we'd set the alarm and do a late night/early morning sleep feeding. Ugh!

Nowdays, one doctor tells us to get DS used to the taste of cream and whole milk -- pick one or two high calories things to feed him to keep the calories up. Another doctor says, no to the cream and whole milk 'cuz it will "fill him up" and he won't eat enough -- again the quantity vs. calorie issue. Argh!

One doctor tells us ds has a nice layer of fat on him, while another tells us he's overweight. IMO, I prefer "overweight" to "malnurished".

I'm not going to get into a power struggle with DS. We feed him what he wants to eat, what we KNOW he'll eat and encourage him to try new foods.
 

amber682

New member
I hear ya about the squirming on the scale! Vinny's pretty
hysterical when it comes to them weighing or measuring him, or even
touching him for that matter. I did realize it was a big mistake to
let him drink a pediasure too close to meal-time or he's already
full.<br>
Also, the CF center's dr.s never compare his weight there with his
weight at the general pediatrician, only with his last weight taken
there. (In case the scales aren't both calibrated the same or one
place's scale is off.)<br>
Tots are so picky aren't they! One week I'll swear he doesn't like
a certain food, and a couple weeks later he'll be eating it up no
problem, or the other way around. Last month he loved balogna, this
month he won't eat it. Last month he wouldn't even take a bite of a
grilled cheese, a few days ago he ate half of mine!
 

Ratatosk

Administrator
Staff member
Toddlers --- DS loved bean soup, chicken ala king, mac & cheese, hot dish, hot dogs -- now he spits. It's yucky! I just tell myself that it's only a phase and remind that when I was a bit older than him, I sat at the table for an eternity because I refused to eat ONE green bean. L
 
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