The girl who was 380 pounds at 15 and 4’7 is now 22 and bedbound. Allowing super morbid obesity in a child with PWS doesn’t have to happen.
It’s not love when a parent gives in to the child’s unrelenting hunger. The mom of the said teen was quoted in an article, “I hate to see her hungry.”
Even with the hypotonia (low muscle tone) that comes with Prader-Willi syndrome, a teen isn’t going to get to 380 pounds without massive overconsumption of food.
According to photos, the girl appeared to be around 4’7; 4’9 tops. At this height, 380 pounds is especially enormous and extremely dangerous to her heart and other organs.
In fact, at 15 she was already on supplemental oxygen.
I recently checked out her mother’s Facebook: The child is now bedbound at 22. I actually had predicted this when I first saw photos of her at 15.
It’s considered criminal when a parent hardly feeds their child, but it’s okay to overfeed one’s disabled child to the point of requiring supplemental oxygen at 15 and becoming bedbound at 22.
PWS and Food Seeking
The rare condition of Prader-Willi syndrome does not directly cause super morbid obesity. It causes constant, raging hunger — due to a partial deletion on paternal chromosome 15.
This deletion causes impairment in the hypothalamus, which regulates hunger; the person always feels starving.
This hunger is so unforgiving that there are documented cases of people with PWS going to extreme lengths to obtain food.
An adolescent boy with PWS ate rotten cake collected from garbage and consumed rabbit feces (BMC Research Notes, Di Lorenzo et al, 2016).
A young man with PWS was reported by his father to eat out of rubbish bins due to insatiable hunger (Journal of Law and Psychiatry, Murray et al, 2021).
A paper in International PWS Clinical Trial Consortium (2020) discusses a man, 18, stealing over $200 from classmates to buy food.
People with PWS will sometimes go these lengths to acquire food when the refrigerator and cupboards in their homes are padlocked.
Some will find ways to break through simple locks (leaving a bolt cutter around in the garage isn’t a smart idea), but let’s not forget that some parents simply will not install any locks in the first place.
They Don’t Have to Be Obese
We forget that there are plenty of parents who do indeed have their child’s eating habits under control.
Simply google Prader-Willi syndrome or seek it out on Instagram, and you’ll see many kids and teens with this genetic disorder who are of a normal weight, or maybe slightly overweight (certainly nowhere near 380 pounds), and some appear even to be a little underweight.
Thus, it’s entirely possible to effectively manage food intake in a minor with PWS.
A study reported that 12 of 14 kids with PWS maintained appropriate weight for up to five years through low calorie diets and restricting access to food (American Journal of Diseases of Children, Holm et al, 1976).
In 2013, Miller et al (Journal of Human Nutrition and Dietetics) found that a well-balanced, energy restricted diet improved weight control in those two to 10 years with PWS.
There’s plenty more where these come from. Group homes and in-patient centers boast dramatic weight loss in PWS clients and patients.
No, they aren’t starved to get the weight off. Instead, food is secured, made inaccessible. Plus, meals and snacks are based on a rigid, predictable routine.
Many parents won’t bother implementing this kind of structure and instead just give in.
The low muscle tone means a slower resting metabolism, which means a lower caloric intake would be necessary for maintenance of weight loss.
However, this doesn’t change the feeling of hunger; someone with Prader-Willi is going to feel the same starvation-level hunger whether they eat 1,500 calories a day or 5,000.
But some parents will keep giving in, thinking they’re doing their child or teen a favor (“I just can’t say no”), when in fact, they are slowly killing them.
The teen girl isn’t the only case I’ve read about. Though she’s still alive, she doesn’t have long. She is bedbound.
Based on the Facebook post, this confinement to a bed isn’t the result of a broken leg or auto accident. Instead, it’s where she’s at now. And it can only be downhill from that point.
Mom will blame it entirely on PWS. She will never see herself as a major player in where her daughter has ended up.
PWS causes constant raw hunger. Yes, for sure. But morbidly obese elementary-age kids with PWS (and without, for that matter) are outright getting overfed by their caretakers.
Where do the kids get all the food from?
Pictures of the girl when she was younger than 15 show significant overweight. She didn’t suddenly become SMO at 15.
For years, she’s been given extreme amounts of food by a mom who couldn’t put her foot down (this would include locking up food).
For some parents, the idea of locking up cabinets and putting food in safes is unthinkable.
But if food is accessible, someone with PWS will eat nonstop. There are cases where this nonstop eating led to a fatal stomach rupture.
I find it unthinkable that a mom would let her child get to 380 pounds. The girl has a genetic disorder; this means the way things operate in the household need to be different for the sake of her health and survival.
One of those differences is locking up the food. Kids can’t drive. They don’t have the money to buy 5,000 calories a day of food.
The enormous quantities of food can only be coming from enabling parents or caretakers.
That poor girl could’ve been active, healthy and even into Special Olympics sports – but instead has, since as early as 15, been in a physically incapacitated state, and now must live her life out of a bed — unable to just get up and go shopping, to a festival, bowling, even just a walk around the block — all because her food intake was never properly managed.
I might add that based on what I’ve read of the girl, and based on some Facebook posts, it definitely seems as though she has always had a sweetheart disposition.
You might’ve read that some kids or teens with PWS will exhibit violent behavior when not given food.
But not all are like this. This girl doesn’t seem that way, either. But even when severe behaviors are present, this doesn’t preclude enacting an effective lock system for food accessibility.
The earlier in life that kids with PWS learn that food comes only at certain times of the day, only in fixed quantities, and cannot be accessed at will, the less difficult it’ll be to keep them at a healthy weight.
Many with PWS are actually proactive in their food intake management. To just give into their demands or begging presumes incompetence on their part!
