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Old 01-22-2015, 12:07 PM   #11
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Re: FPIES ???

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He was like this while nursing too. My son has never had formula, and FPIES usually doesn't appear until babies get formula or start solids. The allergist said FPIES shouldn't have affected him while he was breastfed. But if I fed him more than 3 ounces he would throw it up, and this is way before he started solids. He had fallen off the weight charts by 1 month.

And honestly we cut out gluten at 14 months. He's had a long time to get happy about food. It's just not really improved much.

I have a feeling we'll be testing him for a carnitine uptake disorder on Tuesday.
Yeah sounds like something more going on. A good thing you are pushing for more testing.

I know from personal experience dairy is transferable through breast milk. Is gluten not also transferable through breast milk?

At 2 1/2 my small niece still has a g-tube. Not because she cannot take food in by mouth but because she refuses to take anything in by mouth. For some kids it can take quite awhile to enjoy eating.

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Old 01-22-2015, 12:51 PM   #12
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I make him smoothies now and then, he won't drink them. Just the other night I made exactly what he requested: quinoa with whipping cream and butter (plus some shredded carrot). He helped me cook the quinoa at the stove. Then he wouldn't eat a single bite. After an hour I blended it with vanilla whole fat yogurt and he had a sip and said it tasted good, but then he wouldn't drink more than an ounce of it. The last time I gave him pediasure he threw it up, I think it's too sweet for him. He is almost always in the kitchen with me when I make him food. Last night he made his own GF pizza with me (it was just a GF waffle with sauce and cheese on top). The only times I don't have to force feed him are when we make a special trip to McDonalds and he gets french fries and apple slices (only GF things there). He loves salty things. We give him cashews, chips, peanut butter, and hashbrowns at home, but he won't eat a full meal's worth of these things. Not to sound defensive, but this is no my fault. There is nothing I'm doing or not doing that is making this child starve himself. He has always been like this. His baby sister yells if we have pasta and don't put enough on her tray. At the same age (9 months) he would yell if we did put food on his tray. He just hates to eat.
Definitely not your fault! I can tell from your posts you're doing bending over backwards to get answers and just make your kid happy and healthy! I really hope it gets easier for you and quick.
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Old 01-22-2015, 01:33 PM   #13
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Re: FPIES ???

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Definitely not your fault! I can tell from your posts you're doing bending over backwards to get answers and just make your kid happy and healthy! I really hope it gets easier for you and quick.
thanks. I know no one is accusing me of being a bad mom, but it's so frustrating to see things work for other people and know that their good advice will fall flat for us. And I'm demoralized every time I see a chart note from a doc that says "inadequate intake" or "lack of nourishment." It feels like a jab, even when I know it isn't.

I found this on a physician's forum, and it's giving me some additional guesses:
"Deficiency of carnitine transporter can look very similar to fatty acid oxidation disorder, presenting in childhood with hypoglycemia. Some labs quantify free carnitine as part of their acylcarnitine profile. If it is not included, also check plasma carnitine. Low free carnitine concentration can also be seen in conditions with increased carnitine utilization (organic acidemias and fatty acid oxidation disorders, renal failure, ketosis). If plasma free carnitine is low and acylcarnitine profile is normal, I check renal tubular reabsorption of carnitine by measuring urine free carnitine before starting carnitine supplementation. If plasma free carnitine is very low, but urine carnitine is appropriately low, recheck acylcarnitine profile during or after carnitine supplementation as acylcarnitine species can be low/normal in fatty acid disorders if there are inadequate amounts of free carnitine to produce the characteristic acylcarnitines."


His free and total carnitine were both below normal, his acyl-carnitine was within the normal range but on the low end. He has episodic vomiting with lactic and keto-acidosis. He won't eat. He has poor growth. That's the sum of everything I know. It must fit SOMETHING.

Last edited by Palooka; 01-22-2015 at 01:55 PM.
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Old 01-22-2015, 02:41 PM   #14
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Re: FPIES ???

I just spent 35 minutes on the phone with the nurse in the genetics office. At the end I asked what they were thinking it might be, and she said they had definitely discussed testing for a mitochondrial disorder. I mentioned an NG tube in the meantime to help him gain weight and stop the constant fights about eating, and I expected her to be opposed to the idea... but she said that was a fair thing to consider and we should discuss on Tuesday.

Mitochondrial disease scares me so much. I'm hoping for almost anything else.
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Old 01-22-2015, 07:16 PM   #15
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Re: FPIES ???

This is probably not what you want to hear but have you ever tried canned soup? It's a saltfest. Maybe he would try some of the broth? salty mashed egg yolk?

I think about you often and am hoping you find answers or at least optimism on Tuesday.
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Old 01-23-2015, 06:46 PM   #16
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Re: FPIES ???

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Originally Posted by Palooka View Post
He was like this while nursing too. My son has never had formula, and FPIES usually doesn't appear until babies get formula or start solids. The allergist said FPIES shouldn't have affected him while he was breastfed. But if I fed him more than 3 ounces he would throw it up, and this is way before he started solids. He had fallen off the weight charts by 1 month.

And honestly we cut out gluten at 14 months. He's had a long time to get happy about food. It's just not really improved much.

I have a feeling we'll be testing him for a carnitine uptake disorder on Tuesday.
I have a friend with 3 kids with FPIES. I don't know if they also have other issues, but she was on a severely limited diet while breastfeeding. Like, she lived on rice practically. I only know what she posts on FB now and then, but it sounds like her kids are also on severely restricted diets. She said ocne that her child finding and eating a cheerio would send her into a screaming fit for several days. So, so tough!
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