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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How To Get More Energy?

A mySMAteam Member asked a question πŸ’­
Malaysia

Hi, good morning guys, I am going to change my life, and planning to increase my body weight, but I have no idea on Sma diet, I am not being over 25kg although I am 23 years old already
Can someone who see this post can understand my situation and give a suggestions to me?I am using a Naso-enteric tube for almost 3 years now. Doctor said I will get aspiration pneumonia if still use my mouth to swallow food. I am drinking the milk (brand: Ensure Gold) only with 200ml/4 scoop of powder every 2… read more

June 12, 2023
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A mySMAteam Member

Hello, I am a mother of a child that had type 1 sma. When she was 15 months old she was diagnosed and the drs told me she would not make it to 2 yrs old. They were wrong. She passed away at 12 1/2 yrs old. In her life, she amazed drs and loved to prove them wrong.
W
My point is, you know your own body . If you aspirate you will know or learn to know what causes it. If you don't aspirate but are told by a Dr that you will. .... Drs do not always know everything . I was told to stop feeding my daughter by mouth when she was about 3 yrs old. Because the Dr said she would aspirate and they put in a gtube in her belly. Against the drs advice, I continued to feed her by mouth. When she was fed thru her tube, as directed by drs, it made her too full too fast and gagged her. That caused her to aspirate. I never stopped letting her eat by mouth. And I reduced and slowed her tube feeding .
I wish you well and happiness.

July 31, 2023
A mySMAteam Member

I wish you well my little boys had sna and passed away at 3 months old and they never had the
Issues that you are dealing with I do hope you find a way to manage your weight the way you want too and get more mobility I pray God will help you and your care givers be blessed! From a Momma who cares!

June 13, 2023

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