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Poor little brown child...phase
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<blockquote data-quote="Marguerite" data-source="post: 386675" data-attributes="member: 1991"><p>I was also thinking, Prader-Willi Syndrome. But surely, with all this, he would have been tested already? I'm not blaming you at all, because we are at the mercy of what health professionals are willing to see and perhaps they have been distracted by the "poor little brown child" routine.</p><p></p><p>PWS is among other things a disorder of part of the hypothalamus, the part that recognises when you are full. In PWS, there are a number of features. They don't recognise satiety, which means they feel hungry all the time even when their stomach is literally full to bursting (and I mean literally - this is potentially life-threatening). They also don't have a gag reflex, so they can't vomit if they eat something they shouldn't. They also (and this is cruel) don't burn calories as fast as the rest of us, so they have a combined "I have to eat it all!" switch in the brain coupled with a greater tendency to gain weight. They often are mentally not as sharp as other kids; developmentally delayed. Not hugely, though, so in a younger child they may not have noticed (doctors, I mean). And yes, they can lie to a much greater extent than autistic kids, but often they are not skilled at lying convincingly. Generally their lies will be around food.</p><p></p><p>Now, if PWS has been tested and ruled out, I think it needs to be reconsidered as being there at least partially. PWS is a chromosomal abnormality (a chunk of chromosome 15 is missing) and the overly efficient metabolism (they burn calories a lot slower and hence gain weight) is something they have in common with a number of other chromosomal abnormalities, notably Downs.</p><p></p><p>But what you describe about him eating until he is so full he can't walk, and apparently still wanting food - if this is not PWS, then I would be asking for a brain scan or whatever you can, that will show if there are any lesions in the hypothalamus region. I used to work with an endocrinology professor whose work with rats discovered the regions of the hypothalamus which, if accidentally damaged, could lead to the rat eating itself to death. Because in the cages he had, he was able to ration the rats, he was able to prevent this happening, but it was an accidental side effect of other work he was doing on the pituitary (right underneath the hypothalamus) and in working on one area, sometimes another got damaged.</p><p></p><p>Any organ in the body can have acquired injury, or congenital damage. I was born with a congenitally deformed kidney; not a big problem for years, in my case. No reason for it, although one of my sisters has a similar kidney, and another sister's daughter too. Congenital defects happen a lot more than we realise and there isn't always any reason for it.</p><p></p><p>In this case, if it is not PWS, then I would still be looking at the possibility of some level of damage to the satiety centre of the hypothalamus. Interestingly, it is also the hypothalamus that has the temperature sensor in it, although he should have independently enough pain receptors in his skin to warn him of the burn danger.</p><p></p><p>Exposure to drugs before birth - I don't think it's a likely cause, although it would need to be considered. But in this case, cause is not the issue, the most important thing is - what is going on in this little guy, to make this happen?</p><p></p><p>About the "poor little brown baby" thing - I'm wondering if, outside the lying and the other problems, he's really a sweet kid? That could be what people are responding to.</p><p></p><p>We had a fair bit to do with a PWS kid who we first met five years ago in difficult child 3's drama class. A beautiful kid, and he and difficult child 3 at first were good friends. Then this boy's behaviour became really difficult and he would rage at the other kids. He would get very jealous (not related to food) and would misbehave or try to hurt the other kids, because of his own anger. THAT could have been due to food. His mother had t lock up all food, had to also watch him closely, because he was very inventive at trying to defeat the locks. He would get so hungry that he would eat anything he could; he finally began to gouge out his own flesh. Obsessive Compulsive Disorder (OCD) was also a facet of his syndrome. She was the most caring, loving and vigilant mother, but she herself was wasting away from the effort. Finally when his self-harm became more than she cold physically prevent, he had to be laced into therapeutic foster care. It seemed weird to us, that this woman, the best mother in the world as we saw it, had to relinquish her own child. But it was simply because nobody could manage this child without 24/7 professional supervision. He now always has someone with him, constantly, on guard, around the clock. He still spends time with his family, but his carers are always there too. We last saw him at a birthday party at a restaurant, of all places, and he was very heavily sedated. It made me feel very sad to see him so sleepy he was falling asleep in his food but his mother explained to me, "I hate it too, but at the moment this is the level he has needed to calm down this extreme self-harm. Also, if he falls asleep before e finishes his food, it means he is not as badly over his daily calorie quota as he would otherwise be."</p><p>She had regularly had to take him to the hospital to get his stomach pumped or to have his self-harm repaired. Pica was also a huge problem - he would eat anything. I won't go into details, it is too nasty. Not all PWS kids are this extreme. And this boy was not that extreme, when we first met them his PWS was brilliantly managed by his mother and he was only seemingly a little pudgy, not the usually really chubby pre-teen you get so often with this. But then things began to go really bad - I remember the mum telling us about how her birthday dinner at a family restaurant was totally wrecked when he threw a tantrum because she rationed his food that he had helped himself to from the salad bar. He began screaming, "I'm starving! Give me back my food! You never let me eat enough!" in public, and remember - this boy did not have the usual PWS overweight look, he looked normal and so other people in the restaurant, including staff, tried to intervene and tell this mother off for starving her son. Awful, she said they never went out to eat again while he lived at home.</p><p></p><p>The thing with this sort of problem - they really can't help it. The boy we know, was actually very compliant for a PWS kid, until it all got too much for him. His mother used to buy those single serve milk sachets for him and dole them out as treats, one at a time. ALL food was locked away. The rest of the family had to live with this. It is really, really hard and heartbreaking. But PWS, undiagnosed and untreated - far worse.</p><p></p><p>I would at least be talking to the PWS association and picking their brains.</p><p></p><p>Here is another link - <a href="http://en.wikipedia.org/wiki/Prader&Willi_syndrome" target="_blank">http://en.wikipedia.org/wiki/Prader&Willi_syndrome</a></p><p></p><p>But also consider - the hypothalamus can also have problems independently of PWS.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 386675, member: 1991"] I was also thinking, Prader-Willi Syndrome. But surely, with all this, he would have been tested already? I'm not blaming you at all, because we are at the mercy of what health professionals are willing to see and perhaps they have been distracted by the "poor little brown child" routine. PWS is among other things a disorder of part of the hypothalamus, the part that recognises when you are full. In PWS, there are a number of features. They don't recognise satiety, which means they feel hungry all the time even when their stomach is literally full to bursting (and I mean literally - this is potentially life-threatening). They also don't have a gag reflex, so they can't vomit if they eat something they shouldn't. They also (and this is cruel) don't burn calories as fast as the rest of us, so they have a combined "I have to eat it all!" switch in the brain coupled with a greater tendency to gain weight. They often are mentally not as sharp as other kids; developmentally delayed. Not hugely, though, so in a younger child they may not have noticed (doctors, I mean). And yes, they can lie to a much greater extent than autistic kids, but often they are not skilled at lying convincingly. Generally their lies will be around food. Now, if PWS has been tested and ruled out, I think it needs to be reconsidered as being there at least partially. PWS is a chromosomal abnormality (a chunk of chromosome 15 is missing) and the overly efficient metabolism (they burn calories a lot slower and hence gain weight) is something they have in common with a number of other chromosomal abnormalities, notably Downs. But what you describe about him eating until he is so full he can't walk, and apparently still wanting food - if this is not PWS, then I would be asking for a brain scan or whatever you can, that will show if there are any lesions in the hypothalamus region. I used to work with an endocrinology professor whose work with rats discovered the regions of the hypothalamus which, if accidentally damaged, could lead to the rat eating itself to death. Because in the cages he had, he was able to ration the rats, he was able to prevent this happening, but it was an accidental side effect of other work he was doing on the pituitary (right underneath the hypothalamus) and in working on one area, sometimes another got damaged. Any organ in the body can have acquired injury, or congenital damage. I was born with a congenitally deformed kidney; not a big problem for years, in my case. No reason for it, although one of my sisters has a similar kidney, and another sister's daughter too. Congenital defects happen a lot more than we realise and there isn't always any reason for it. In this case, if it is not PWS, then I would still be looking at the possibility of some level of damage to the satiety centre of the hypothalamus. Interestingly, it is also the hypothalamus that has the temperature sensor in it, although he should have independently enough pain receptors in his skin to warn him of the burn danger. Exposure to drugs before birth - I don't think it's a likely cause, although it would need to be considered. But in this case, cause is not the issue, the most important thing is - what is going on in this little guy, to make this happen? About the "poor little brown baby" thing - I'm wondering if, outside the lying and the other problems, he's really a sweet kid? That could be what people are responding to. We had a fair bit to do with a PWS kid who we first met five years ago in difficult child 3's drama class. A beautiful kid, and he and difficult child 3 at first were good friends. Then this boy's behaviour became really difficult and he would rage at the other kids. He would get very jealous (not related to food) and would misbehave or try to hurt the other kids, because of his own anger. THAT could have been due to food. His mother had t lock up all food, had to also watch him closely, because he was very inventive at trying to defeat the locks. He would get so hungry that he would eat anything he could; he finally began to gouge out his own flesh. Obsessive Compulsive Disorder (OCD) was also a facet of his syndrome. She was the most caring, loving and vigilant mother, but she herself was wasting away from the effort. Finally when his self-harm became more than she cold physically prevent, he had to be laced into therapeutic foster care. It seemed weird to us, that this woman, the best mother in the world as we saw it, had to relinquish her own child. But it was simply because nobody could manage this child without 24/7 professional supervision. He now always has someone with him, constantly, on guard, around the clock. He still spends time with his family, but his carers are always there too. We last saw him at a birthday party at a restaurant, of all places, and he was very heavily sedated. It made me feel very sad to see him so sleepy he was falling asleep in his food but his mother explained to me, "I hate it too, but at the moment this is the level he has needed to calm down this extreme self-harm. Also, if he falls asleep before e finishes his food, it means he is not as badly over his daily calorie quota as he would otherwise be." She had regularly had to take him to the hospital to get his stomach pumped or to have his self-harm repaired. Pica was also a huge problem - he would eat anything. I won't go into details, it is too nasty. Not all PWS kids are this extreme. And this boy was not that extreme, when we first met them his PWS was brilliantly managed by his mother and he was only seemingly a little pudgy, not the usually really chubby pre-teen you get so often with this. But then things began to go really bad - I remember the mum telling us about how her birthday dinner at a family restaurant was totally wrecked when he threw a tantrum because she rationed his food that he had helped himself to from the salad bar. He began screaming, "I'm starving! Give me back my food! You never let me eat enough!" in public, and remember - this boy did not have the usual PWS overweight look, he looked normal and so other people in the restaurant, including staff, tried to intervene and tell this mother off for starving her son. Awful, she said they never went out to eat again while he lived at home. The thing with this sort of problem - they really can't help it. The boy we know, was actually very compliant for a PWS kid, until it all got too much for him. His mother used to buy those single serve milk sachets for him and dole them out as treats, one at a time. ALL food was locked away. The rest of the family had to live with this. It is really, really hard and heartbreaking. But PWS, undiagnosed and untreated - far worse. I would at least be talking to the PWS association and picking their brains. Here is another link - [url]http://en.wikipedia.org/wiki/Prader&Willi_syndrome[/url] But also consider - the hypothalamus can also have problems independently of PWS. Marg [/QUOTE]
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