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06-07-2017, 06:37 AM   #1
Pilgrim
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Vitamin testing

We did a bunch of labs when she had her GI appointment, as we usually do. Then they send me a letter asking for me to get her vitamin E tested.
Does anyone know why? It struck me as odd!
06-07-2017, 07:42 AM   #2
my little penguin
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If she is on strict scd and losing weight they would be checking for malabsorption or lack of intake issues ...
Plus I think vitamin E has to do with clotting ???
06-07-2017, 08:56 AM   #3
Pilgrim
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That makes sense. She is losing weight, but all lab markers had been trending positively..I figure albumin would work better for malabsorption but I guess I am not the GI.
06-07-2017, 09:02 AM   #4
DanceMom
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When malabsorption is possible vitamins A, D, E, and K are usually checked. Also, restrictive diets sometimes result in insufficient vitamin levels (and in our case insufficient protein).
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

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06-07-2017, 09:05 AM   #5
Pilgrim
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Thank you! Good to know.
06-07-2017, 06:15 PM   #6
Maya142
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Interesting - we had weight loss and malnutrition and never had Vitamin E checked, as far as I know. It was usually albumin, Vit D, B12 and Magnesium.

Anyway, I hope the test is ok and she starts gaining weight soon!!
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06-07-2017, 08:28 PM   #7
Pilgrim
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I hope so! They said to do it with her next set of labs, so there wasn't a sense of urgency. But you know, the ol' gerbil wheel in my head starts to spin! We'll do it towards the end of the month.
06-07-2017, 08:44 PM   #8
Pilgrim
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Maya142 how far did the weight loss go and what did you do?
06-07-2017, 08:50 PM   #9
Pilgrim
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Maya142 I just noticed on Kim's thread that you have explained your daughter's history. We are nowhere near that place yet but just starting to notice a departure from her growth chart.
06-07-2017, 11:31 PM   #10
Maya142
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It was almost 30 lbs. And it happened slowly - over two years. It was a couple pounds at every appt. so her GI didn't even really notice till she had lost 15 lbs!

The tube was really all we did - it has made a miraculous difference. She was a different kid once we got proper nutrition into her.

One of the things that helped was seeing a nutritionist. She helped us try high calorie foods and upping formula orally. When that didn't work, she recommended a tube. What surprised (her) and us was the number of calories my daughter needed to gain weight. I'm not sure we would have really figured it out so quickly if we weren't being followed by a nutritionist so carefully.

She needed 2400 calories to gain weight. We'd guessed at the most 2000. For a 80 lb, 5'2 kid who was done growing, 2400 calories is a lot! I guess it must have been malabsorption, but it was a surprise. That is a LOT of formula.

I would watch closely, I'm sure you are. Weight loss is even more important when they're growing. I wish we had acted on it sooner.

Another thing to consider - if she isn't gaining on Ensure, then look into something more broken down - like Peptamen Jr. It tastes worse, but she may absorb more. That was another surprise - my daughter needed an elemental formula (Neocate) and couldn't even tolerate semi-elemental (Peptamen). Most kids with IBD are able to tolerate semi- elemental formulas according to our GI, but some kids just can't.

I'm sorry I'm rambling so much. Really hope H feels better soon!
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