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Forum: FTT and Weight Gain Issues

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  #1  
July 9th, 2007, 02:18 PM
Xty's Avatar
Xty Xty is offline
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Hi. My daughter Sarah will be 6 weeks old tomorrow and she was hospitalized from Mon to Thurs of last week for "failure to thrive." She did not gain any weight since she was 2 weeks old - in fact she lost some. She went from eating maybe 18 or so ounces a day at 2 weeks to now eating only 10 ounces a day. A baby her size (9lbs 7 oz currently) should be eating 25 or more ounces a day. She's also been having coughing fits for the last two weeks that cause her to vomit. She's had an abdominal ultrasound, two chest x-rays, an upper GI series, two sweat tests (for CF), an EKG, heart and oxygen level monitoring, blood work, urine tests and a test for whooping cough. All (other than the whooping cough which were're still awaiting the results for) have been negative. So they don't know what's wrong. We've tried multiple formulas on her too - she's currently on Neocate which is for babies that are allergic to the hypoallergenic formulas! Just got back from being at the Children's Hospital in the city all day meeting with pulmanologist who say we should retalk to the gastroentologist who saw her last week and said it wasn't a GI issue and that we should have a feeding/swallowing study done but they are booking them out 3 months (3 months! She'll be 4 months old by then! She should see someone now!!!). We're beyond frustrated. She's now gaining a little weight as they've increased the concentration of the formula to up the calories in it. But we still have no idea why she will only eat 10 ounces a day or why she is coughing (though the coughing seems to be perhaps getting a bit better?). Anyway, just wondering if any of this sounds familar to anyone or if anyone here has any ideas?
Thanks
Xty
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  #2  
July 10th, 2007, 05:59 AM
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My son was 6 mo old when he started having issues, even then he didn't lose weight, he just didn't gain enough to make the doctor's happy. We never had the coughing issues either but did have most of those other tests you mentioned run on him. Three months seems like an insane amount of time to wait to have an appt. Are there any other doctors in your area you could see? Brandon was put on Alimentum from about 8-12 mo and he handled that well...but it does get expensive. Sorry, I'm not much help. Please keep us posted!!
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  #3  
July 10th, 2007, 08:33 AM
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We have an appt with our ped in an hour and that's one of the questions I'm going to ask - can't we get her in to see someone about the feeding study sooner? I just don't see waiting 3 months, that's a huge amount of time for a newborn!!!
If anyone here has to use Alimentum (or Nutrimagen or Neocate) ask your insurance if they cover it. Mine does - so when my son was on Alimentum it was always free - not even a copay. And now my daughter's neocate is free. You just have to have your doctor write a prescription for it. I'm not on WIC or anything like that - just our normal health insurance.
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  #4  
July 10th, 2007, 10:01 AM
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that's good to know for this next baby (i'm hoping we don't have the same issues the second time around). i paid for all that formula out of my own pocket too. let us know what your pedi says!
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  #5  
July 11th, 2007, 05:26 AM
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Our insurance covers the neocate our son's been on it since he was 4months old and he's now 18months. Did they check for reflux? Our son coughed when eating and after and limited his intake because of reflux. Also we saw and ENT who told us he had a weak (there is a medical term but it escapes me right now) laranx(sp?) which fluid would get caught in causing him to cough. He out grew this around a year.
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  #6  
July 16th, 2007, 12:50 PM
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Location: NE. OH
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I'm so sorry your little one is having troubles.
That coughing sounds, to me that it's most likely either elevated acids in her tummy coming back up on her. That hurts a LOT. And reflux is the biggest reaosn why babies(childrena nd adults even) cough while eating, or shortly after.

Our daughter was on neocate for a long time-then neocate one plus and eventually E028-which is made by the same company but comes in juicebox form and is flavored(nasty though, lol). She was always on a lot more than they would normally prescribe for someone her age and/or weight.
I feel your frustrations on not being able to get her in though. We've BTDT so many times. It really sucks. Unfortunately, a lot of times, there is nothing that anyone can do. Places just get so backed up and see so many patients they fill up quickly. I noticed the GI in particular(and anyone working with them) at our hospital, fills up REALLY fast. All of our appointments were always booked out at three months or longer. Unless we were already in there and she had a lot of tests done while in there. That's another problem children's hospitals run into. They've got so many patients that are in-house and are needing these same tests and such.
I'm surprised they didn't do that while she was already in there though.

Does she lay down while eating? Even a little? I mean, I'm sure you're holding her, but do you lay her back? If so, don't. Try her in a closer to sitting up position-yet keeping her stretched out(s her tummy doesn't get pressure from her other organs and such, like it does while sitting). Does that make any sense? I'm working on no sleep here, sorry, lol. I know when our DD was really little (way under the recommended age for solids) we had to add substance to her feedings. That was before she had her nissen fundoplication though. She just couldn't keep those thin liquids down very well. If your dd needed that though, you would've found out with the other testing they did.
I'm sorry if I couldn't be of any help. I hope things go better for you much sooner. You might want to ask her pediatrician if she/he knows of any other GI docs in your area, or even ones you can get to easily. Sometimes you've got to drive a good way, but in the end it's worth it. Maybe another doc can get her in sooner!!
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