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-> Children's Health
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amother
DarkViolet
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 Thu, Jan 02 2025, 10:46 pm
| amother OP wrote: | | Small, but ok for his weight. I don’t remember what percentile he is in. I had him tested for celiac because I have it, he was negative. |
You tested for celiac with blood work? That’s not accurate for a child this young. Especially if he doesn’t like bread, he might not be eating enough gluten to show up on the blood test. I would ask for an endoscopy and make sure to push gluten before the test to get accurate results.
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amother
Apple
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Thu, Jan 02 2025, 10:57 pm
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EOE can only be seen with endoscopy with biopsies. Even if the esophagus looks normal there can still be inflammation that shows up on the biopsies. Make sure they take biopsies from the top middle and bottom of esophagus. They will also for sure check for celiac when they do the endoscopy. My son has had endoscopies for EOE at three different hospitals and they always check for celiac at the same time.
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emee2
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Thu, Jan 02 2025, 11:57 pm
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Sending you big hugs! This is a very hard journey! I was on it for years! Periactin helped us! I hope it will be the answer you need. We also used benecalorie which you can order on Amazon and add to anything. It’s tasteless.
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amother
Brown
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Fri, Jan 03 2025, 12:38 am
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amother
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Fri, Jan 03 2025, 7:22 am
| emee2 wrote: | | Sending you big hugs! This is a very hard journey! I was on it for years! Periactin helped us! I hope it will be the answer you need. We also used benecalorie which you can order on Amazon and add to anything. It’s tasteless. |
What is benecalories?
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amother
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Fri, Jan 03 2025, 7:42 am
| amother DarkViolet wrote: | | You tested for celiac with blood work? That’s not accurate for a child this young. Especially if he doesn’t like bread, he might not be eating enough gluten to show up on the blood test. I would ask for an endoscopy and make sure to push gluten before the test to get accurate results. |
He eats plenty of gluten, just not bread. Cookies, pretzels, pasta….but if we end up doing an endoscopy, I will have him retested.
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amother
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Fri, Jan 03 2025, 9:31 am
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No advice but that's my nightmare. So I'm sending massive hugs because I know how to tough that is
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amother
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Fri, Jan 03 2025, 9:38 am
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Benecalorie are small Abt 400 Cal little pods with tasteless powder that you can add to foods to increase calories u can find on amazon
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amother
Copper
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Fri, Jan 03 2025, 9:50 am
I was in your shoes 18+ years ago. My now 20 year old was diagnosed with failure to thrive at about a year for a few years. Your son actually seems to eat way more than mine did at that age, and we were threatened with feeding tubes more than once. Meals would take an hour and we were lucky it we got 5 bites into him.
Does your son get feeding therapy? Could it be sensory that he doesn't like foods (we discovered that was the case for some foods when my son was 3)? Does he have pain when he eats (silent reflux)? Food intolerances?
My son is now 20, supper skinny, barely 100lbs (but also very short--5' 3"). BH he eats now (picky, but eats) and as long as he's healthy and not losing I try not to worry anymore.
Hatzlacha
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amother
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Fri, Jan 03 2025, 11:20 am
| amother Copper wrote: | I was in your shoes 18+ years ago. My now 20 year old was diagnosed with failure to thrive at about a year for a few years. Your son actually seems to eat way more than mine did at that age, and we were threatened with feeding tubes more than once. Meals would take an hour and we were lucky it we got 5 bites into him.
Does your son get feeding therapy? Could it be sensory that he doesn't like foods (we discovered that was the case for some foods when my son was 3)? Does he have pain when he eats (silent reflux)? Food intolerances?
My son is now 20, supper skinny, barely 100lbs (but also very short--5' 3"). BH he eats now (picky, but eats) and as long as he's healthy and not losing I try not to worry anymore.
Hatzlacha |
BH no feeding tubes discussed. He has been classified failure to thrive since he was a few months old. I guess I let my hopes get the better of me at our last visit :-)
He does get speech for feeding. He had awful reflux for a long time, but he seems to be over that for a while already. (That’s part of what the swallow studies were for- to see how bad it was, and obviously to see if there were any visible issues that would be contributing to the vomiting or not eating) Some things he doesn’t like the texture, but most things he’s ok with. Like he will eat schnitzel or chicken nuggets occasionally, he likes apple sauce occasionally, he likes chips and pretzels and cookies occasionally…..
He hasn’t had anything to eat or drink today (he woke up about 9:30) and just now he ate about half of a dole pineapple fruit cup. He won’t drink the oat milk bottle.
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amother
Blueberry
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Fri, Jan 03 2025, 11:24 am
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How much food is he actually consuming at each meal, are you tracking that?
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amother
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Fri, Jan 03 2025, 11:31 am
| amother Blueberry wrote: | | How much food is he actually consuming at each meal, are you tracking that? |
I’m going to start tracking on Sunday. (The GI said it was ok to wait)
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amother
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Fri, Jan 03 2025, 12:03 pm
Does he have any episodes of vomiting? Has he had blood work to rule out any thyroid / hormonal issues? And to look at eosinophil levels
I'm surprised the Drs are not looking more into these things and ordering the testing especially if he has a history of failure to thrive
I'm an RD with a baby that has a confirmed growth hormone deficiency plus possible eoe ( we are doing a scope soon but his growth issues were confirmed to be hormonally related and very different issues to yours but I actually had to advocate for the testing on the hormonal end. My pediatrician kept brushing me off. But I trusted my experience with working within pediatric nutrition cases of failure to thrive to look into it on my own and see the endocrinologist gi etc . Bh I trusted my intuition
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ClassySass
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Fri, Jan 03 2025, 12:05 pm
| amother OP wrote: | A few months ago, I took my now two year old for a follow up with his GI. They were very please with his gain and growth- he had gone from the 3rd percentile for weight up to the 10th. We went back today for another follow up, and he is back to the 3rd :-( It wasn’t a miscalculation, his pediatrician had the same numbers when we went to him.
Poor kid :-( He has 2 Kate farms shakes a day. I used to give one in the morning, but now I try to hold off until he has eaten breakfast. He usually has a milk bottle before he takes a nap (oat milk- he doesn’t really like regular milk) and he has another shake right before he goes to sleep, when we are saying shema and listening to music.
I try to add fat/calories to his diet, but he eats so little! We got a prescription for periactin, which I hope will help.
One of the things the doc mentioned is the possibility of EoE. My baby has had two swallow studies done, would that have shown up? If not, what does the testing involve? How is it diagnosed?
I use butter or oil when I make pasta, I try to give him avocado. He occasionally eats salmon. He also occasionally will eat an omelet with one egg (which I make with butter or oil) What else can I give him to add calories? |
Does he meet his milestones?
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amother
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Fri, Jan 03 2025, 1:01 pm
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Is he deficient in zinc? There's a blood test for that but there's also a smell test for that. Often causes kids to stop eating.
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cookier
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Fri, Jan 03 2025, 1:21 pm
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Which Kate farms shake do you use?
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amother
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Sat, Jan 04 2025, 6:55 pm
| amother Forestgreen wrote: | Does he have any episodes of vomiting? Has he had blood work to rule out any thyroid / hormonal issues? And to look at eosinophil levels
I'm surprised the Drs are not looking more into these things and ordering the testing especially if he has a history of failure to thrive
I'm an RD with a baby that has a confirmed growth hormone deficiency plus possible eoe ( we are doing a scope soon but his growth issues were confirmed to be hormonally related and very different issues to yours but I actually had to advocate for the testing on the hormonal end. My pediatrician kept brushing me off. But I trusted my experience with working within pediatric nutrition cases of failure to thrive to look into it on my own and see the endocrinologist gi etc . Bh I trusted my intuition |
Can you give me more info? I can speak to the GI or the pediatrician and request tests, but I need to know what I’m asking for.
BH no more vomiting, for a while already.
He has had a lot of bloodwork done, I’m not sure what it was all for.
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amother
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Sat, Jan 04 2025, 6:56 pm
| cookier wrote: | | Which Kate farms shake do you use? |
I will look when I go downstairs.
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amother
Cinnamon
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Sat, Jan 04 2025, 6:57 pm
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If he's eating more than gaining then holding him can help. Touch, holding, love.
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