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Forum: FTT and Weight Gain Issues

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  #1  
June 1st, 2008, 06:24 PM
Girl_interrupted
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*sigh*

My daughter had open heart surgery at 12 months, and she was 17 lb. 5 oz. on discharge day.

One year later, she was up to 25 lb. 8 oz. She had angioplasty a week and a half ago, and since then, she's fallen down to only 23 lb. 5 oz. I can hardly get her to freaking EAT!

She's super picky; she can't have dairy.

What do I do??? She's whittling away to nothing!
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  #2  
June 1st, 2008, 07:42 PM
Caeden'sMama's Avatar Mega Super Mommy
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Of course she's going to lose some weight after such a big procedure... But i bet you she gains it back pretty fast too. I would just wait it out a little bit... She's still gained a good amount in the last year even WITH the loss, and her weight definitely is at an okay level... Hang in there!
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  #3  
June 2nd, 2008, 05:24 AM
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I agree - it's only a week and a half since the last procedure - her body is probably still healing and trying to deal with things. What does the doc say? Does he say it's normal to go down on eating after this? Was she eating a lot better right before the procedure? My DS is 2.5 and is super picky too and doesn't eat much, but that's what I hear toddlers do (he's not my FTT child - he does fine on the growth curve). I'm finding that if I can make the meals "fun" he'll eat more. He loves to use toothpicks to eat his food, so we sometimes take deli meat and cheese and make bite size rolls ups held together with toothpicks and he will eat so much more of that than if I just gave him the slices of meat/cheese on their own. Yesterday he didn't want lunch, but when I used a cookie cutter to cut the pizza into star shapes he was all over it. I dunno. It's hard!
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  #4  
June 2nd, 2008, 10:37 AM
Girl_interrupted
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She is always picky. *sigh* She is eating even LESS. I read that she's supposed to be consuming 1200 calories daily! She was probably somewhere around 700 before angioplasty. Now it's probably 300. I can't get her to drink her soy milk. I can't get her to drink her smoothies. Nothing. She is nursing 4 or 5 times a day, and that's it. Thank God I practice extended nursing--it's absolutely the only nutrition she's currently getting. I try to make it fun. I try bribery. NOTHING works! I went and got her some of the lunchables jr. with turkey and cheese (we don't eat pork, so that's the only one that's an option). She can eat dairy with enzymes (yogurt, cheese), but she won't eat a lot of it. They are only 130 calories, but she'll only eat about half and be done--if I'm lucky.

One of the side effects of lasix is anorexia. She can't afford to be anorexic! She has now fallen back below percentile 5. She was doing so well for a while there--getting all caught up. She has to continue lasix--the doctor didn't give us an end in sight for those meds. They prevent congestive heart failure.

I just don't know any alternatives for her that are high cal that I can sneak in on her when she's taking her five or six bites a day...
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  #5  
June 2nd, 2008, 01:14 PM
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I guess I'd ask the doc for a consult with a nutritionist or someone like that? She can't have dairy, so my normal suggestion of using cream instead of milk on cereal or using Ensure high calorie drinks won't help and you say she won't drink her shakes so scandishakes (high cal) won't help...hmmm
Is there anything she eats that you could mix corn oil into? Maybe even something that sounds gross to mix it into like applesauce or something? My DD used to have to have corn oil mixed into her baby foods to add calories, but at 2 years old your DD is probably not eating purreed baby food! But perhaps you could add it to stuff like applesauce or hot oatmeal or something? My ped just had us mix a teaspoon into her meals, so its not like your adding a lot and it would alter the taste... Oh - what about peanut butter? Does she eat that? Could you mix some oil into that?
Is the doc concerned with the weight loss?
My husband had heart surgery as an infant and later as a child and he was always super skinny. Still is. Do the docs just think she will always be low on the growth curve?
I'm so sorry she's had so much heart surgery - I can't imagine what you've gone through. HUGS.
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  #6  
June 2nd, 2008, 01:56 PM
Caeden&#39;sMama's Avatar Mega Super Mommy
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I agree... Talk to the doctor and see if he might want to refer you to a nutritionist. There ARE lots of ways of sneaking calories in that they can talk to you about if this is an ongoing problem.

It's gotta be so tough trying to deal with both the heart issues and the FTT issues. My heart goes out to you...
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  #7  
June 4th, 2008, 05:27 AM
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*hugs* Kim, and *hugs* to Maddie as well. I think over time she'll up her eating again. I know it's really scary that she is dropping weight so quickly, but it's bound to happen after a procedure. Is she not allowed dairy ever again, or is it temporary? Does she still eat a lot of bread? You can always try to make bread that you sneak a lot of fat into and give her that.
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  #8  
June 4th, 2008, 07:45 AM
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Quote:
*hugs* Kim, and *hugs* to Maddie as well. I think over time she'll up her eating again. I know it's really scary that she is dropping weight so quickly, but it's bound to happen after a procedure. Is she not allowed dairy ever again, or is it temporary? Does she still eat a lot of bread? You can always try to make bread that you sneak a lot of fat into and give her that.[/b]

She can eat dairy products with enzymes (yogurt, cheese), but she has issues with the proteins in uncultured milk. I tried to make my own cultured milk for her, but it didn't work out so well.... I can't find acidophilus milk anymore.

She has gone on a kind of strike with bread, too. I made some the other day, hoping she want to pick at the dough like normal, to no avail.

I have figured out that it's definitely the lasix. Two times now, I've forgotten them at night, and she has spent the next day eating quite well. *sigh* I guess I'll just have to pray she doesn't have to be on the lasix forever.
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  #9  
June 4th, 2008, 10:53 AM
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would her heart doctor (?) know a way to counteract the affects of the lasix?
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  #10  
June 4th, 2008, 02:05 PM
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Well... here's the deal on that. I called yesterday, and the nurse said that none of the ped patients have had that effect, so it must be something else. Never mind that BOTH times she didn't have her lasix, she ate like crazy. She said I need to call her regular doc and get a referral to a GI doctor for the weight/appetite issues.

So I guess that would be a no.
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  #11  
June 4th, 2008, 03:16 PM
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Thats extremely frustrating! Maybe there is a board somewhere with moms who have had kids on lasix? Talking to other moms who have dealt with this side affect might be your best bet to finding a solution. *hugs*
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  #12  
June 5th, 2008, 09:43 AM
Girl_interrupted
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point taken.

I'll retreat to find another place that may be able to help with a weight issue.
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  #13  
June 6th, 2008, 06:48 AM
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Don't go! I don't think she meant you should leave!!! Just that perhaps there is more info out there on the lasix and not eating. If you can print some stuff out and show it to the doc it might help. Please stay - we're here for you.
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  #14  
June 6th, 2008, 08:20 PM
frgsonmysox's Avatar Platinum Supermommy
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I absolutely did not mean not to post here! I just have no idea about lasix and the side affects of it. I just thought you might find a heart issues board where other parents have dealt with it and had solutions to that side affect. I never meant you can't post here or you shouldn't. I was just trying to help you find more help and support.
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  #15  
June 7th, 2008, 12:11 AM
MellieB's Avatar Platinum Supermommy
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Was just lurking and thought I could offer some help.

My son has also had OHS and is on Lasix. He's still only young and tube fed so the side effects aren't as great. However, I can offer two suggestions...

*Ask about a different brand of Lasix. While they are all basically the same their side effects can differ from child to child.
*Ask about giving them at a different time of day. I'm assuming its only one dose a day, and noticed you said at night. Even giving her to them of a morning instead may help.
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  #16  
July 10th, 2008, 09:04 AM
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HOw's it going now? Were you able to do something about the lasix?
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