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  #1  
January 3rd, 2006, 11:58 AM
glasscandie's Avatar What I make is what I am
Join Date: Feb 2005
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My daughter has Netherton's syndrome (well, more than likely, DNA test is due back next month). It's a type of ichthyosis, pretty rare, and she has failure to thrive issues b/c of it. Basically her body burns more calories than normal b/c of her increased skin production. It's either that, or her body's not using the calories she gets effeciently (there's not too much info on Netherton's, b/c it's pretty rare).

Anyway, she's 3 months old, but technically 2 months b/c she was a preemie. We're exclusively breastfeeding, and I'm looking for ways to get more calories into her. She doesn't take a bottle very well at all, and will *maybe* take 1mL of formula after she nurses. She's too young for cereal or other solid foods. Just looking for suggestions!

Also, anyone heard of MCT oil? And does it work well?
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  #2  
January 3rd, 2006, 04:07 PM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
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I think you should talk to your pediatrician about some ways to get extra calories in her. If you need to use a calorie fortifier in your breast milk, you can use a supplemental nursing system so that she doesn't have to use a bottle. That is what I used with Brandon when he had Failure to Thrive. We used it for a couple months and I supplemented him while he nursed at the breast.

I am not sure about MCT oil. I know the specialist that I saw with Brandon told me to add vegetable oil to his foods but I don't know what they would recommend for Julia. She is really young.

((Hugs)) to you both.
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  #3  
January 3rd, 2006, 04:44 PM
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my son is 12 months old and he has failure to thrive and his ped. has him on 24 calorie formula. That might be an idea for you. If he wont take a bottle try a syringe minus the needle.
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