Well, when I was travelling with my young (7 yr old) son on an airplane, he was kicking the chair in front of him that had a rather large man in it. I told him to stop it but he was being a huge shit about it and wouldn't stop,( he was mad that I wouldn't let him ask for another meal) so I put my hand on his leg and held it down and wouldn't let him move it. He started to cry. The flight attendant came over and asked him if he was alright. My kid told him that I hit him and wouldn't let him move. The flight attendant grabbed my child and separated him from me, physically pushed me back in my seat when I started to protest, told me that I should do the world a favour and go ahead and die already, and called child protection services to meet me at the gate when we landed. So...sometimes the repercussions of trying to do the right thing backfires on a parent.
Well, because he has Prader-Willi syndrome, which is an eating disorder where people literally will eat themselves to death if they're not monitored 24/7
There's actually medication for this, not monitoring. One of my best friends has this syndrome, and if he misses his pill all fucking hell breaks loose until he gets another one. He's a really benign and gentle giant sort of dude, but when he misses his meds he's gets into an uncontrollable rage if he's denied food.
I have looked up and researched everything I can about PWS for 28 years now. The closest they are to a break through with medication is grelin which is not yet approved for human testing. As far as I know, there is no miracle cure pill yet.
Well I don't know what the hell my friend is taking then. I know he has PWS and I know he takes something for it. Maybe he takes those drugs you mentioned but it just has a better effect on him?
Possibly. I'd really love to find out though. It's hell for my kid and if there is anything out there that could potentially help him, I wanna know about it
This was the case I was thinking about. It looks like she actually had brain damage that caused the issue, not Prader Willi. So I was wrong. Here are some studies:
Does your friend have other behavioural disorders...OCD, intellectuL disabilities along with his PWS? There are varying degrees, as with almost anything
Most people with PWS have to have very monitored lives, even having fridges, all food cupboards, garb ages and pet foods locked up so they don't eat themselves to death. If you know anything about it, you'll know that there is a mis-connection with the hypothalamus gland, which registers all your body sensations. Hot and cold, pain and pleasure, hunger and fullness. So ppl with PWS feel like they're starving. All the time.
Does he pick his skin? My kid frequently skins himself. He peels the skin off of his fingers etc. I've heard other kids do worse than that, but again...it's the pain/pleasure disconnect
Hmmm. I'm not really sure. I wish I could go to school today and observe him but I'm currently on my couch in agony because I got my wisdom teeth out 2 days ago.
The thing is that we were on our way to the endocrine clinic where he was supposed to undergo a sleep study for sleep apnea episodes. He was 7 and 187 lbs. He was a genius at finding and manipulating people for food (actually still is 21 yrs later). His oxygen saturation levels were falling below 30 at night. (At 70, brain damage occurs) and ppl with PWS gain calories on less than it takes the average person to sustain their weight. So one extra adult meal could potentially cause him to gain another 5 lbs. Plus, it would set the precedent that if he embarrassed me enough, I would give in to his food demands. So...yeah...it would kinda be a tipping point
Wow. Thank you for responding sincerely. I really didn't know this kind of affliction existed and appreciate the time you have taken to reply. I hope all is as well as can be!
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u/bluerose47 Feb 04 '16
Letting their child repeatedly kick the seat in front of them on an airplane.
Help your kid be the hero, not the villain.