Testimonials

How much fat can your child tolerate now and at what age?

"At three years old, he is fed 9 mL of walnut oil through his G-tube a day at a rate of 3mL three times a day. He is fed 750 mL of Tolerex formula a day all of which is mixed with pea protein powder. Due to the feeding aversion he developed as a result of his first 15 months of treatment, he sees a feeding therapist and is starting to eat (albeit slowly) fat free soups, vegetables and chicken."

"Our daughter is now 3.5 years and can tolerate 1-2 grams of fat per serving.(she seems to tolerate fat better when she has it with bread or other starch)"

Is your child growing and developing normally?

"Developmentally he is where he should be for his age. While his growth in height and weight has been slow, it has been consistent and he is not underweight."

"Our daughter is growing and developing normally. Though she is a bit short for her weight."

What were the first changes you noticed after the low fat diet was started?

"His diarrhea went away after a couple of weeks and he no longer had any reflux. The walnut oil substantiated his fat needs and he slowly started to grow in height and weight."

"The first change we noticed is that she stopped to vomit, then her stools improved. After a few weeks she started gaining weight and looking better, though it took a few months for her to completely recover."

When your child started on a low fat diet, how long was it before you started to notice a change?

"Almost immediately."

"We started seeing change when our daughter started a fat free diet."

When your child was born and before treatment was started, please describe what happened.

"He was unable to gain weight as soon as he was born and was originally put on an NG tube and after three months was put on a G-tube after endoscopies showed no damage to his GI tract. At 5 months, after still failing to gain weight, and with chronic diarrhea and chronic reflux since birth, he was fitted with a Broviac and received TPN until age 15 months. He continuously contracted CLABSI infections and his Broviac line broke every few weeks and new ones were continuously implanted in him. During this time, a genome test on him, my wife and me revealed the mutation of the DGAT 1 gene. He was started on Tolerex formula, the Broviac was removed, and walnut oil was given to supplement his fat."

"Before our daughter started proper treatment, she failed to thrive. When we tried feeding her it would work only for the first few days or week. The first symptom was always diarrhea, then she would start to vomit and lose weight and would eventually get dehydrated. She basically survived her first 6 months on TPN and lipids."

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