Weight Loss & Panicking...

[Caro46]

Hi

After much debate, our daughter had a g-tube placed end of March which was replaced with the Mic-Key button about a week ago. BUT, she's not yet gained any weight, in fact she's lost a few hundred grams, despite her total Scandishake intake having increased quite substantially. Her appetite to eat actual food on either side her feeds is negligible, but this is not much of a change from before the Mic-Key. She's 3 and 10 months now and weighs 12,2kg (26,9 pounds). She's on the maximum amount of Creon for her size.

So we're very worried now - had high hopes for this Mic-Key, and were told only positive stories. Has anyone else had this or a similar experience - poor to no weight gain after changing, possibly even weight loss?

It's so late here, I should be sleeping, but every time I put my head on my pillow I panic about what might happen if we just can't get her to gain...

Moral support needed! Thanks...

 

[patpatstoo]

My daughter is 18. She had a Mic-Key for 5 years. She never went above the 25% and she still is below the 25%. Weight gain is a topic at every visit but it hasn't made a difference. After her Mic-key was taken out at age 5 she gained some because we threatened her with putting it back in, she hated that thing. I would still do the same thing because she didn't eat anything by mouth until she was about 4 years old. She is a great eater today after many sleepless nights. If I only knew then what I know now, I would have let it go, because all of the worrying didn't make a bit of a difference!

 

[jshet]

My 16 year old son had a gj tube placed in January. He has gained about 2 lbs. his cf doctor is happy with tha because he struggles so much to gain weight. My son is no where near the growth chart. He weighs 72 lbs. his clinic and I no longer look at the growth chart for him and just watch him on his own curve. He is very behind and I worry all the time. Have you thought of trying another formula to see if she reacts better to it? Maybe you need to increase her feed times. We have just increased from 12 to 15 hrs a day. Does she like to drink juice? There is a high calorie juice called Boost Breeze made by Boost. My son has severe allergies and could not tolerate but it does taste good. If she does well and likes it, her insurance should cover it as a medical food. Good luck Janelle

 

[briarrose]

A couple of things:

-Is she on an acid suppressor (zantec, etc.) to help make the enzyme work better?
-Is she getting her Creon dose based on the fat she consumes or her weight? Once we switched our son (now 22-months-old) to enzymes based on fat consumption per meal, he started gaining a lot.
-Have you tried an appetite stimulant like periactin? When we paired periactin with the appropriate enzyme dosing for our son, he gained something like 4 lbs in 3 months (which was a huge percentage of his original body weight).
-If you've tried all of these things, you might need to try a different enzyme to see if it works better for your daughter

-Also, have you tried to increase calories with something like MCT oil? It's supposed to be an easier fat for people with CF to digest. (Nestle's MCT oil seems to have the most calories out of any brand, and it's the one that our Chicago clinic recommends for our son... cheapest place I've found it is FirstOptionMedical.com, but you have to buy 2 bottles to get free shipping.)

- What are you putting through her tube? I know a lot of tubie parents swear by a blended diet for their tubies. (Here's a link to one of their groups that people like a lot: https://www.facebook.com/foodfortubies.) It's about putting real food through the tube instead of all the premixed formulas. You can mix in MCT oil, cream/melted butter/half-and-half, etc., along with fruits. vegetables, meat, fish, flax seed, etc. I think they have a lot of recipes on that site. The before and after photos are kind of amazing.)

I hope this helps! We haven't gone the tube route yet since we can get our son to drink his calories still (he won't eat anything... just drink), but this is definitely something that keeps us up at night, too.

 

[Caro46]

Thanks for the help and advice...! We've got a very clued up dietitian and as far as I understand it she's on the best formula available here (South Africa), which we're boosting with extra carbs & protein powders. The thing that troubles me so much is that her intake has increased so much since having the tube inserted, I would have expected at least that she doesn't LOSE weight. We haven't yet started night feeds, this will be the next step if she can't get enough out of her increased day feeds, so all is not yet lost... Still, it just makes no sense. And of course, the worrying helps nothing at all, but that bits largely uncontrollable...

 

[jshet]

One thing that may give you comfort is that she is not too far from hitting the growth chart. I think if she gets to at least the 3-5th percentile you will feel more comfortable. Sending prayers and well wishes your way, Janelle

 

[LittleLab4CF]

This is a bit of trivia I picked up about infant weight. There are more than one weigh/height/age/sex chart that doctors can refer to. An example is formula fed babies have totally different metrics than breast fed. Who'd a thunk?

LL

 

[Helas]

Nice post dude. I think the best way to lose weight is that you take care of your diet and also do some exercise. Make sure that you take low fated food an also drink green tea to boost your metabolism. It's helps to burn extra body fat and loss your weight. But don't forget to take exercise. In exercise i think cycling and swimming are best for this purpose.

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