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Forum: FTT and Weight Gain Issues

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  #1  
May 13th, 2007, 11:40 PM
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Join Date: May 2007
Posts: 115
Here's our intro and story:

I'm Amanda, and my refluxer is Aidan, 14 months. She was officially diagnosed at 2 weeks. By a month old, she was put on Zantac and Bethanechol. At 2 months, she was hospitalized for 3 days and had her second upper GI and her first endoscopy done. They couldn't find anything wrong with her except reflux, and the attending pediatrician told me that she was just "colicky." They put her on Reglan and upped her Zantac dose. Also at this time, they told me to pump for her morning feedings and put cereal in the bottles. We stopped the cereal and the Reglan within two weeks, and Aidan's PCP put her on Prevacid. At our follow up with the GI that hospitalized Aidan 6 weeks later, he told me that since she had gained 6 oz that she was fine, wasn't refluxing at all, and that he wanted to start weaning her from the Prevacid. Even though I was told him multiple times at that appointment that things were getting worse for us at home. Aidan was spitting up more, more projectile vomit, more arching and screaming during feeds.

Our PCP sent us to another GI at another hospital, and he is fantastic. He upped her dosage of Prevacid, and thus, we started our elimination diet, as I was nursing. No dairy or soy products at all for 2+ months. In July, Aidan's weight began to level off, and regardless of the diet and Prevacid, things were still getting worse. So, I ended up pumping for a month and giving Aidan Neocate formula. Her GI also decided to do a pH probe around this time, and by this time, she had also developed a chronic cough. Her probe results came back even more severe than we ever thought. Everytime she was coughing, she was refluxing, and this was most of a 24 hour period. Because of her probe results, she ended up having a second endoscopy.

Meanwhile, Aidan's weight continued to level off and then by September, she had started losing weight. So, in October, we went forward with a nissen fundoplication and gtube placement, and she was diagnosed failure to thrive. Now at 14 months, she weighs 15 lb (as of this past Wednesday!!!), and is still considered FTT. She still has her gtube, and it has been quite a rollar coaster.

ETA: She's recently been put on periactin, which is the medication they give anorexics to get them to eat. She also does continous feeds overnight for 10 hours through her feeding tube
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  #2  
May 14th, 2007, 06:07 AM
AnnaBananasMom's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: North Carolina
Posts: 14,475
Poor Aidan. I'm so sorry to hear of her troubles. It must be very hard on you too. I hope that you are able to find something that works for her. I know there is at least one other child on here who does tube feedings as well.

And welcome to JM!
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  #3  
May 14th, 2007, 08:20 AM
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Join Date: Nov 2004
Location: Indiana
Posts: 1,615
Welcome, Amanda!!

I can 'hear' the heartache in your words!! I'm sorry you're going through this, but you've found a great group of ladies here!!

My daughter has been on Periactin as well, many of FTT kids are in severe cases. For two of us here it has worked wonders, but neither of our children has reflux as well!! What a horrible thing for you. I hope your GI helps find a way to soothe the savage beast that is your babies stomach!! In the meantime, feel free to vent and cry here...

*huggles*

Sadue
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  #4  
May 14th, 2007, 04:38 PM
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Join Date: Feb 2005
Posts: 13,269
Hi, welcome to JM. My son is also on Periactin as well and we've had great success with it. We've taken him off before to see if his appetite remains but it won't. So far that's really his only issue, no appetite. I'm feeling a bit yucky (morning sickness) but just wanted to respond real quick to this. By the way, I'm from Texas too, where are you at?
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  #5  
May 14th, 2007, 09:57 PM
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Join Date: May 2007
Posts: 115
Quote:
Hi, welcome to JM. My son is also on Periactin as well and we've had great success with it. We've taken him off before to see if his appetite remains but it won't. So far that's really his only issue, no appetite. I'm feeling a bit yucky (morning sickness) but just wanted to respond real quick to this. By the way, I'm from Texas too, where are you at?[/b]
Thanks for the welcome. I'm not really noticing much increase in her appetite. How long does it take?

ETA: I'm in East Texas.
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  #6  
May 15th, 2007, 07:47 AM
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Join Date: Feb 2005
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The meds really only took about a day or two to kick in for Brandon. He eats much more on them. I have heard that they don't work for everyone and the NP at his GI doc actually told me that she doesn't even believe that they work at all, but Brandon really does eat more on them.

I'm in San Antonio, BTW. Nice to see a fellow Texan
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  #7  
May 15th, 2007, 09:02 AM
glasscandie's Avatar What I make is what I am
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Welcome to the board!! I'm Courtney, and my daughter's Julia. She hasn't been considered FTT for a few months, but she is still off-and-on night tube feeds (we do the NG feeds, though, as a supplement and just insert the tube whenever she needs it and take it out when she doesn't). Jules has a skin disorder, which was the cause of the FTT, but it was still scary - at 8 months when we started the tube feeding, she was 8lbs, and has gained about a lbs/month since we started the feeds. She's 19 months and is a few oz. under 19lbs at the moment.

Anyway, welcome!
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