Weight Gain

[lovemygirl]

I know there has probably been a ton of emails on this topic but I am going to do this anyways. My daughter is 4 yrs old and having a lot of trouble gaining weight. She has not gained any weight in about 9 months and we are concerned.
At last clinic in Oct she got pseudomonas for the 1st time and started on the nebulizer. They also increased her enzymes (to the max dosage) to try and help her gain weight. It is almost time to go to clinic again and I don't think she has gained any weight. If she has it is a max of 1/2 lb. She is on Cotazym 4 now and the the plan is to increase her to the cotazym 8 when we go back at the end of the month. She does not do well on high fat foods, nor does she like the taste of a lot of it.
Any suggestions or words of reassurance.

Thanks!

 

[anonymous]

Hi- Have they discussed a g-tube with you yet? I know I was really against it, but it has done a lot of good for our daughter.


Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

Hi - My child who is 3 lives on chocolate pudding, potato chips, smarties, pedisure and scandi shake and seems to do okay.... he does not eat "foods"( i think it is because of the reflux.) You have to find what she will eat and bulk that up.....

Sandy (mom of Robbie 3 wcf)

 

[anonymous]

When my daughter was young, she had trouble gaining weight too. She is now 20, a college student, a dancer and not even underweight. So...there is hope. We fiddled around with different enzymes when she was little, but the real turning point came when she was 7. Her doctor started her on zantac and she has not had a weight problem since that day. It seemed that the acid in her stomach was interfering with the enzymes. Now she takes Pancrecarb which is an enzyme with bicarbonate already in it. How is your daughter's over-all health? Try not to panic. It is so hard, I know. I can remember giving my daughter cream in her cereal and all kinds of other stupid things. All it did was ruin her appetitie. Good luck; my heart is with you.

 

[anonymous]

My son loves pediasure and scandishake.. he practicly lives off of those.. hes a junk food junkie and its real hard to get him to eat anything that is good for him so whenever he wants pediasure and scandishake i give it to him just because i know hes getting alot of good things from those.. he drinks on average 5-6 cans of pediasure a day and has a scandishake mixed with milk and cream before bed... he turned 3 in july and he weights 36 pds...


Melissa mom to dylan 6 no cf and caleb 3wcf

 

[anonymous]

She did try Zantac and was eventually put on Prevacid which has been helpful but we are at a standstill again. As far as junk food she is not a big fan and I cannot see how it would be good for her. I try to fatten up healthy foods but she likes her vegetables plain; without extra butter or cheese. The dietician is not ready to put her on any shakes yet and a g-tube has not been mentioned at all.
Thanks for your replies.

Love my girl

 

[anonymous]

Hi-

I am going through the same thing with my 6 year old. He has not gained weight or grown since July. Last month his doctor sat me down and said that if we can't get him to grow, he would start discussing a g-tube. But first he told us to get as many calories in him as possible. His main problem is that he is an active boy and doesn't want to take the time to sit down and eat. He also isn't very impressed by sauces, dressings, and other fattening things. So far he is going great with his shakes. He prefers them mixed with whole milk and sometimes instant breakfast. We are also having him eat a big snack/dessert righ before he goes to bed. According to our scale, he gained 2 pounds in the last month by doing this. It is a lot of work, but I would suggest that you talk to your doctor about adding shakes, etc. to your daughter's diet. According to our doctor, it is important for young children to gain weight and grow - besides the obvious reasons, it also has been linked to better lung function.

Good luck.

--Katrina, mother to Sean (6) w/cf, Carolyn (5) w/o cf, and Allison 3 w/o cf

P.S. Scandishake also makes a product that you sprinkle on regular food to add calories - that also might be a good option for your daughter

 

[Evelyn]

I know exactly what you're going through. Our daughter just turned 9. She's 4'4" and weighs 57 pounds. The nutritionist that we work with is a nightmare. I finally had it out with her on our last visit. She kept telling us about how my husband and I are "failing" at giving our daughter the proper nutrition that she needs. Every sentence she used had the word "failure" in it. She kept talking about putting her a feeding tube and that is our last resort. Despite her weight gain, of lack of, she has excellent lung function.

Here's our problem. Our daughter never sits still! She loves to run and is so over active. Which of course the doctor praises because it's exercise. On the other side, she eats constantly!

No one else in our family has CF; only my daughter. However, half of my family members are skinny. I'm 31, 5'5" and only weigh 107lb. My mom, 61, is 5'5" and weighs 120lb. And my late maternal grandfather was 6'3" and weighed 140lb. I'm sorry but if genetics gave my daughter CF, don't you think genetics plays a part in her weight issues?

We have increased her enzyme intake by 1 extra pill at meals and snacks and are trying to stuff her contantly. Also we are "hiding" the Scandical as often as possible in her foods. (The Scandishakes made her throw up. I can hardly blame her; I tried it and I threw up!)

All we can do is try as hard as we can. And that's really the only advice I can give others.

 

[anonymous]

Hi,
I'm new to this sight and searched "weight gain" because my 18 month old, Amelia, is suddenly having a very hard time. She doesn't have much of an appetite and likes fruits and veggies, which unfortunately don't help her. Can I ask what happened with your daughter? We're doing scandishake now,which she really likes. We're very nervous that a feeding tube is in our future and are completely stressing over this. I realize your note was posted back in Jan. I hope your daughter's doing much better!

Thanks!
Cindy

 

[anonymous]

To those of you that do not want to discuss feeding tubes; believe me I understand your thoughts and feelings. But, please do not wait - it is not that bad. My daughter has always had difficulty gaining weight, has always been very active, and has parents/family that are very thin (I am 37, 5'3" and weigh 100 lbs.). For a long time we would not discuss feeding tubes with the doctor "give us one more visit, we'll put the weight on her, give us more shakes, it's genetic, etc........"

Then our daughter got pneumonia for the very first time (age 7). She did not have the nutrition or the fat stores to fight the infection. We were told that if we did not get the feeding tube she was going to die. You can only imagine our dilemma at this point - our child having pneumonia and having to undergo an operation to save her life. At this point we did not have any options. Please, discuss the feeding tube options with your doctor - our daughter has a mickey; she will be the first to tell you that its not that bad.

 

[thefrogprincess]

High fat food upsets my stomach so I really have to watch it especially with dairy. They are just too hard to digest. Maybe that is what's going on here. The important thing is calories and protein not fat. Try pediasure, its soy based so has lots of protein. Also look into polycose, I honestly don't know if they make it anymore but my parents gave it to me when I was a kid. Its an odorless flavorless powder that is nothing but calories. My parents put it in jello, milk, pudding, juice, even gravy and I never even knew about it. You also may want to switch brands of enzymes instead of strength. I can't have generic enzymes, something about them gives me unreal stomach cramps. They tried switching me once and I missed 10 days of school because I was so miserable.

 

[anonymous]

to go off of what froggy said, calories and protein are important, and even though CF dieticians will press that fat is of utmost importance, I have to tell you that based on results (my husband and other CFers) the fats will take care of themself if you get the calories and protein in.

I have said this a few times, but feel it is appropriate to mention again. My husbands stomach was always very upset as a little guy. As he grew older, he "self medicated" in the sense that he varied every other meal solid, liquid, solid, liquid, solid, liquid.... to keep his stomach normal, to keep it from cramping and to keep him from being in pain. And to this day, he still eats all his meals that way. I recommend you look into pediasure as froggy recommended, or even boost/ensure (PLUS version) although I am not sure at what ages a child can begin to take that. There are also protein puddings made by ensure that are high in calories. Mark found that if he ate solid meals every single time he ate, he had problems in the bathroom, cramping, and when he had coughing attacks with a stomach constantally full of solid food, he was vomitting; making the meal pretty pointless, essentially. He found that when he ate a solid meal and all the sides, then next time had 2-3 boost shakes or protein powder or meal replacement (something by myoplex or serious mass-for example) or one of those high protein puddings, his stomach was less upset, he was able to go to the bathroom and he had a desire to eat again.

If your little one associates pain (somach, bathroom, getting sick) to eating, he/sh isn't going to want to eat. That may or may not be an issue but I just wanted to bring it to light. I also have to agree not to avoid the feeding tube. If it's necessary at one point in their life, it may not always be necessary. But weight is a very important part of CF care, I do believe it's the main reason my husband is so healthy.

Hope some of this helps a bit,

Julie (wife to Mark 24 w/CF)

 

[lovemygirl]

Cindy,
She is still quite small for her age and will be 5 yrs old this month. She started in a new summer program this week and the kids are commenting (not making fun) on her size. It is hurting her feelings a bit but we will work through it.
She has clinic at the end of the month. They told us in April that they would like her to gain weight by this clinic and I am certain she hasn't done that at all. Last time I spoke to the dietician she didn't want to start shakes and a tube has never been mentioned. I didn't even know it was an option.
I will try and remember to update you after her next clinic visit at the end of the month. I try not to stress about it and didn't realize it had been so long since she had gained weight, until I read this posting again.
I wish I had some words of wisdom to give you so that your daughter could gain weight but I haven't found the solution yet.

 

[anonymous]

My daughter loves those drinkable yogurts. A lot of them are lowfat but we have found a couple fatty ones that she really likes. The Yobaby and Danimal Extremes. They are a good, fattening snack but they are healthy and have a lot of protein. My daughter drinks a couple of these a day and I think it helps with her weight. Also, I give her a spoonful of peanut butter every now and then and ice-cream whenever she wants it. She is gaining weight at each clinic visit but very slowly. She is 3 and weighs 32.5#. I get so anxious everytime it's time to weigh her b/c it's always been such a issue. Good luck everyone........I know how frustrating the weight thing can be.

Amy

 

[anonymous]

Hi! My little girl is 23 months and not a good eater at all. She has always had a problem with growth. She weighs 22#12oz, and has not gained any weight in 2 months. She gained maybe 1/2 a pound over the last 5 months. We are adding a tasteles calorie booster to her pediasure and food to help. It is called Scandical calorie booster. They also have shakes. You may already be doing that, but any suggestion may help.

 

[gptn]

Hello all. I'm pretty much a lurker, read everyday and I think I've maybe posted once or twice. Any way, my daughter Maddie will be 18 months on the 22nd. She weighed 25 lbs at her last appointment. She takes 3 creon 5 with meals and 2 with small snacks (3 with large ones). Maybe we've just been lucky, but since the diagnosis @ 4 mo. and starting the creon, weight has not been an issue. I thought I'd share a typical day of meals with you.

1st meal: 4 oz Yobaby yougurt mixed with 1Tbsp of ground flax seed. A piece of toast (or cheese toats), cheerios or rice chex soaked in milk and 2-4oz Horizon whole organic milk

2nd: pancake or egg with cheese, more cereal soaked in milk, a fruit and anywhere from 4 - 6 oz milk

3rd: sandwhich (PB&J, grilled cheese), a vegetable, string cheese or slice of American, a fruit and 4 - 6 oz milk

4th: 6oz Yobaby drinkable yogurt or a 4 oz Yobaby mixed with 2-4 oz milk

5th: sauteed chicked (or some kind of meat), vegetable, noodles and usually 2-4oz milk

That is pretty much it and seems to be working OK for us. The vegetables and noodles are usually prepared with butter and sometimes cheese. Like I said we've been fortunate she is a good eater and not very picky. Anyway, hope that might help someone or give some ideas...

Greg
Dad to Maddie 18mo. w/cf
www.maddietate.com

 

[lovemygirl]

Hi Cindy,
Here I am with my update. We went to clinic today and she grew 1 cm. but lost weight. For the first time in 5 years we are going to clinic in 2 months (normally we go every 3 months). She started malabsorbing about a week ago and I think that is when she lost the weight. The respirologist wanted to increase her enzymes because the dietician is on holidays, but I asked to wait until she gets back next week. I have a good relationship with the dietician and feel more comfortable with her making the decision about enzymes, although that may seem strange to some of you.
I am a little upset about the visit today because of the weight loss and also a cough she has had for the past two weeks. They are waiting for the culture results to come back before they decide on an antibiotic because her PFT's are at 159% and her lungs sound clear, so they don't know the cause of this wet cough. The last 2 weeks have been tough with the cough and loose stools and I was hoping clinic would lift my spirits but it hasn't.
I hope Amelia is doing better...let me know.

 

[Seana30]

I am not sure where you are from, I am from Texas and we have a company called Mrs Bairds. They sell breads, doughnuts, etc. Mrs Bairds sells a pie that is alot like the fried pies that you get at McDonalds.

THESE PIES HAVE 500 CALORIES AND 28 GRAMS OF FAT!! Courtney has 2 pies a day. They are small enough that she does not feel stuffed after eating them, and they are just packed full of calories! They have them in apple and cherry.

Seana

 

[anonymous]

i have a 5 year old with cf and have this same problem and he has always been under weight or he puts on weight then gets sick .there is not much u can do try not to stress to much <img src="i/expressions/face-icon-small-happy.gif" border="0">