One of the main types of patients that we treat here at Nexus Children’s Hospital – The Woodlands are children that are diagnosed with Prader-Willi Syndrome. They benefit from a pediatric weight management program.
What is Prader-Willi Syndrome?
Prader-Willi Syndrome, abbreviated as PWS, is a rare condition that is going to be permanent and begins at the birth of child. These are children and adolescents who don’t have the ability to feel satiated at any time after eating. These children become very obese, sometimes weighing two to 300 pounds, and only being five feet tall. And we’re the only inpatient program for these kids in the United States.
That’s our job. We’re here to jumpstart their lives, get them back on track, get them back on the road, get them back on the right path through a pediatric weight management program.
What are the symptoms of Prader-Willi Syndrome?
PWS is extraordinarily difficult. You know, you can give anything to your children and your child is still starving. That’s pretty hard to live with. You get to the point of hopelessness sometimes it’s like the, the behavior’s overwhelming. The relentless drive to, to eat. The breaking the doors, breaking the locks, destroying the refrigerator, destroying things in the house. You get to the end of your rope and you think, what am I gonna do? Having an inpatient program provides hope for the families. We realize this is a very difficult disorder. And we’re here to help.
What are the goals of kids with PWS and childhood obesity in the Jump Start Program?
Premier goals for our patients here would be the weight loss. So they go through a structured program of activity, healthy eating, structured eating to help lose weight. They lose somewhere between two or three pounds a week that we anticipate they will keep off, that they’ll learn to eat this type of a diet going forward and, um, be able to keep the weight off.
So it’s a strict calorie control for weight loss. In a typical inpatient hospital, you might have these kids for a week or two, and so it’s not, you know, a really in-depth look at their diet. Whereas here, we keep them longer because they may stay for two, three, four months plus.
What does a typical day in the Jump Start Program look like for a kid with PWS or childhood obesity?
Their day is typically busy from when they wake up in the morning until the evening time. The activity that, that the recreational therapy provides in the form of play and games. They have fun. They play different games all day. They have an affinity for puzzles. We do puzzles here all day long.
What family education is available from the Jump Start Program?
Family education is a major component of the Jump Start Program as well. It’s important that they have a good behavior plan so that when we train the parents closer to discharge, they could continue to sustain those gains that they’ve had here. It’s a jumpstart. It’s not a forever home. The level of confidence that the kids build — I think with the, when they feel lighter, they feel better.
Actually. They’re so proud of themselves and you can really see them grow and kind of, um, learn that their body doesn’t need as much food to feel good.
They work hard every day. We challenge them to have a very strict diet and to be up and active. The one-hundred-pound club is a celebration that we have for the kids. When they reach their one hundred pounds of weight loss, it’s a milestone. And so we make a party out of it.
They may come in and they’re so heavy, they have a hard time walking, and by the time they leave, they’re like running out of here!
We’ve addressed just about every aspect of the disorder successfully here to any parent that is looking for help, I’m here to say we can help them.
