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Forum: FTT and Weight Gain Issues

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  #1  
August 4th, 2008, 05:33 PM
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Join Date: Jul 2008
Location: Washington
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Hi everyone. I'm new to this website but so far have found some really helpful info. I was hoping I could post a little of what we are going through and if anyone has been through it maybe they can shed some insight? We just don't know what is going on with my little guy.
My son is 9 months old and weighs 13lb. 11oz. He is not even on the percentile charts. His length is 25 1/2, which is 3rd percentile I think. Here is all the info I have:
He was born at 38 weeks and was 5lb. 10oz.
My Dr. has diagnosed him with FTT, but he also has elevated liver enzymes. I've taken him to gastroenterologist, he has had MRI, ultrasound, he took CF sweat test, has had TONS of blood tests, nothing has come up as positive. The next option is to do liver biopsy.
Has anyone had a problem with their infant gaining weight and not knowing why. Other than being small everything else is fine with him. No other health symptoms and he is developmentally on track. He eats approx. 5-6 bottles a day, they are 5-6oz. and it is the Similac NeoSure (high calorie), he eats approx. 2-3 jars of stage 1 baby food and approx. 1/4 cup rice cereal or oatmeal. Plus he gets 2-4 oz. of apple juice (diluted with water) a day in a sippy cup. He won't eat more than this, even this amount is pushing it. He is just not interested in food. I just don't know where all these calories are going! He is only gaining approx. 6-8 oz. a month. The elevated enzymes is what concerns my Dr. We just can't figure out what is causing this.
Anyone had something similar??? Thanks so much for any help or advice you can offer.
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  #2  
August 4th, 2008, 06:24 PM
JorAydMama06's Avatar Super Mommy
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Location: Martinsburg, WV
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Hello. My daugther has FTT and trouble gaining weight. Not sure her current percentile, but at her last appt she was about 10%. She also has had tooonnssss of blood tests, CF test, etc. and nothing is conclusive.. except for her liver enzymes are also elevated. She has had 3 cases of CDiff and currently has CDiff again. Our children sound alot alike. Did your baby have merconium stains at birth?
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  #3  
August 5th, 2008, 09:27 AM
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Join Date: Jul 2008
Location: Washington
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Quote:
Hello. My daugther has FTT and trouble gaining weight. Not sure her current percentile, but at her last appt she was about 10%. She also has had tooonnssss of blood tests, CF test, etc. and nothing is conclusive.. except for her liver enzymes are also elevated. She has had 3 cases of CDiff and currently has CDiff again. Our children sound alot alike. Did your baby have merconium stains at birth?[/b]
Hello. How did you know she had CDiff? Was there a test or was there signs of this? I'm so sorry to hear your little one is having the FTT too, it's so hard as a parent because you just want your child to be "perfect". I'm not sure what merconium stains means - do you mean that did some of that green/brown stuff get into his lungs? I don't think so, at least I think that would have been something I was told or remembered. Does your Dr. say the elevated enzymes are related to the CDiff? I'm just trying to figure out what is causing the elevated enzymes. The next option for us is to do biopsy.
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  #4  
August 5th, 2008, 10:21 AM
JorAydMama06's Avatar Super Mommy
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We knew she had CDiff because she was having stools 10-12 times a day that were foul smelling. They did a stool cultures to find out.
Merconium Stains is when the baby has a bowel movement inside of you before birth.
No, the elevated enzymes are not related to CDiff. The elvated enzymes are the enzymes in your liver. So doing a biopsy of the intestines won't help for that, unless they are biopsying the liver.
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  #5  
August 5th, 2008, 11:08 AM
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Join Date: Jul 2008
Location: Washington
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Quote:
We knew she had CDiff because she was having stools 10-12 times a day that were foul smelling. They did a stool cultures to find out.
Merconium Stains is when the baby has a bowel movement inside of you before birth.
No, the elevated enzymes are not related to CDiff. The elvated enzymes are the enzymes in your liver. So doing a biopsy of the intestines won't help for that, unless they are biopsying the liver.[/b]
Yes, they want to biopsy the liver. Ok, well my son actually is slighty constipated so I don't think he has CDiff. I don't think the merconium thing happened with him, I really think that would have been something the Dr. or nurses would tell me about, right? So do you know what is causing your daughters enzyme levels to be elevated then?
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  #6  
August 17th, 2008, 12:20 AM
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noone told me my son had mercomin stains, i read it in his chart
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  #7  
August 18th, 2008, 09:26 AM
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Xty Xty is offline
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Quote:
noone told me my son had mercomin stains, i read it in his chart[/b]

This is a very good point. My husband and I have learned that you need to get full copies of all medical records and read them. Not just the summary they send to a new doc - ask for full and complete copies from each doc the child has seen, including for birth. There is bound to be stuff in there no one told you. You are your child's best advocate - each doc just scans it quickly looking at their area of expertise. You need to read the entire thing and as hard as it is try to make some sense of it and then start questioning what you read. For the bloodwork, you can google the tests that were out of normal and see what they are testing for. Seriously - we learned a lot this way and were able to push the docs in the correct way by knowing exactly what was going on with our daughter.

- Xty
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