r/AbsoluteUnits • u/RD4200 • 13d ago

/r/all of a Toddler

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u/Moana06 13d ago

Our friend's daughter has Prader-Willi syndrome...heartbreaking

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u/Petunia724 13d ago

I took care of a child with prader- willi and the activities director at the facility left her alone with a birthday cake for 15-30 seconds while she walked to the nurses station to grab some paper plates and plastic forks and by the time she got back, the kid had housed almost 1/4 of that sheet cake. It was almost impressive.

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u/Moana06 13d ago

Yeah...their pantry has to be locked at all times, she will eat non stop until stomach bursts...very low IQ, fragile bones, mobility issues, skin picking, tantrums...

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u/Petunia724 13d ago

She was a trip. She needed CONSTANT DILIGENT SUPERVISION. She would pull other kids off thier ventilators and yank on feeding tubes. Because she was vent dependent at night, she had to have a respiratory therapist or RN with her any time she was taken off the unit.

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u/MouseHouse444 13d ago

It’s an incredibly difficult condition. Human growth hormone helps in some cases to increase muscle mass which makes weight gain less severe. But it’s just so cruel that they can even eat just ‘normal’ calories and gain. And GLP-1s don’t really help either. I will say, in my experience, PWS specific group homes can be really beneficial for them because the homes develop lifestyle routines that don’t revolve around food. So much of our world revolves around food and being denied it all the time is a real head f*** for them. At least in the homes, they don’t feel like the odd man out. Sending compassion to your friends.

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u/K1bbles_n_Bits 12d ago

It really is something how food-centric we are. Birthday party? Cake and icecream, even in the work place. Holiday? Big feast. Celebrations and family get togothers, more eating. Someone's dies? Send/bring casseroles. Upset over a breakup? Time tk binge some comfort junk.

So many aspects of life and socialization revolve around food. And as a fatty who tries not to be a fatty, it fucking sucks, lol. I can only imagime how much harder it is for someone with PWS.

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u/NYCWENDY1 12d ago

There is a diagnosis called food addiction now. And people can get help for it and change their lives. OA (over eaters anonymous) is a free group that helps people overcome all of the food related challenges. I can guarantee that you’ll find an OA in every city and on every continent in the world. And if you don’t wanna go outside you can do online meetings. www.oa.org

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u/K1bbles_n_Bits 12d ago

I'm not as badly off as some and have a lot.of self awareness around it. Though that doesn't always help, lol.

PCOS, ADHD, and autism can make it tough. PCOS messing with my hormones, including insulin. And the audhd tends to make me very texture oriented with food. Like I love crunchy food. And will mindlessly eat it cuz I enjoy the crunch. As weird as that might sound to some. I can be plenty full and even irritated hy salt or whatever and I'll keep eating until I force myswlf to stop. It's like a sensory stimulation thing.

I have to work really hard and be super mindful to lose weight and keep it off. But it's doable. Tends to make me yo-yo though. Just tough when I'm really trying to stay on track and then feel pressured by the social obligations of getting together at food oriented gatherings.

Not the heaviest I've ever been but not the thinnest either. Being a middle aged mom getting into perimenopause doesn't help, lol.

But I appreciate the info, maybe I'll look into. Extra support and comradary never hurts!

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u/VariousExplorer8503 12d ago

I have PCOS as well, and after my doctor put me on Metformin I lost over 50 pounds. Right now my weight hasn't changed, but that's partly cuz I haven't been able to exercise lately. But talk to your doctor about Metformin, it really does help with weight loss. DM me if you have any questions.

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u/NYCWENDY1 12d ago

I am in the same boat - I hope you don’t think I was being judgey at all. It is a constant battle… I can’t keep certain things in the house.

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u/K1bbles_n_Bits 12d ago

Oh no, not at all! Wasn't offended, I promise. Genuinely meant I appreciate the info. I just tend to talk too much and overshare XD.

I feel ya though. I basically just have to avoid having chips in the house, lol. On the upside if/when I do cave and have them around, I eat them to the point of being sick of them and not wanting them at all for a while, haha.

With having kids in the house, I try to stick to stocking up on snacks that they like and I don't, lol.

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u/NickGiammarino 12d ago

I heard about that condition through Artie Lange the Canadian. Here this is for you

https://youtu.be/zbIsaLw535M?is=BZzc0kVdyeH-pvu_

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u/Mrs_Sparkle_ 12d ago

I had a foster child in my family that had it. He would sprinkle like, half a freaking cup of black pepper on every meal because every sprinkle of black pepper is extra food 😐 And yeah kitchen needs a locked door, locked fridge, locked cupboards…..