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SaltyZebra

Updated 11mo ago

Advice for Eating with SMA Syndrome?

Hi, I was just discharged from hospital yesterday with a new diagnosis of SMA syndrome found on an ultrasound. I’m curious if anyone else has this and what you can tolerate eating? I’m having trouble with anything thicker than mashed potatoes. I am planning to see a dietician/nutritionist but I’m waiting to be scheduled. Any advice would be great.

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Erinbeegee

2y

I went through this a couple years ago. Make sure you have a really good gastroenterologist. I got to the point where I was needing to eat soft foods in very small amounts. And then progressed to a liquid diet. I drank alot of vegetable and fruit juices. Alot of ensure protein drinks. (milk chocolate is the best) applesauce, mashed potatoes, soups, oatmeal, very scrambled eggs. I'm curious if they did a gastric emptying test on you. That's how they found mine and then confirmed with a CT scan.
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SaltyZebra

2y

I was dx with gastroparesis about 10 years ago with a gastric emptying test. I attempted one in hospital but wasn’t able to tolerate the food for it. They originally found the SMA on an upper GI series when I drank a marker and they watched it go through my upper GI tract. Then they confirmed the SMA with a Doppler ultrasound. I wasn’t able to tolerate liquids for a while but now am finally working my way up to slightly thicker items.
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sickyphoenix

2y

I’m currently fed through an NJ tube. I was diagnosed through CT scan, barium swallow test and Endoscopy. If they don’t put you on TPN or tube feeds I’d recommend juices, milk, protein shake, really liquidy purée too. Also butter and melted fats in soups to add calories.
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Kenzkers

2y

How are you doing now? I’m on GJ feeds & eat some by mouth
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Bantam

11mo

I'm on soft foods, and will be getting a tube soon. On bad days I melt mashed potatoes in bone broth. My only real 'meal' at the moment is shepherd pie made with roast chicken, steamed green beans, and mashed potatoes. Try for unsaturated fats.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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