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Prader Willi Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 202991" data-attributes="member: 1991"><p>Lizzie, I'll ask the mother of the boy we know, to see if she's come across this odd 3-month-long behaviour change in young adults. She's very involved in Aussie PWS support networks.</p><p></p><p>Risperdal & sedation - it seemed to be very individual. difficult child 1 was zonked out by quarter of a tablet, difficult child 3 took much more (eventually four times the dose and more) with no sedation, despite being less than half the weight of his big brother.</p><p></p><p>Your son's delayed diagnosis - I'm wondering if he doesn't have full expression of the gene. This can happen with genetic abnormality, depending on exactly how the gene is usually expressed. Or there could be something else caught up with it. Again, I'm going to talk to my friend.</p><p></p><p>I actually learned about PWS not from her but years ago, when I studied endocrinology (as part of a physiology course). She has taught me more - I was never taught about the regurgitation problems, for example. That just adds to the hassles, with pica (which her son has currently, badly).</p><p></p><p>Despite the hassles it still seems to me that an endocrinologist is the best overall person for you. I just can't fathom why he's not referring you to a psychiatrist. Unless he already knows they will refuse to treat him if there's the slightest hint that it could be due to the PWS. He may already know the bloke down the corridor and doesn't want to waste your time.</p><p></p><p>I would assume you've run this mood change problem past the endocrinologist - is there a chance it's related to melatonin? You're in Dublin and have short winter days, shorter than a lot of people have. What sort of lighting is your son exposed to? If you could look into melatonin as a possibility, maybe install some fluorescent lighting with a higher than usual UV output and make sure they're on for extra hours in the evenings and mornings and get him outdoors during the middle of the day every day - if he still develops this mood change problem, then at least you will know you've ruled out the winter effect. But you might be able to reduce it, melatonin may still be a partial factor.</p><p></p><p>I'll do some digging, see what I can find. It's not a problem for us in Sydney, but again - something I learned about back in my misspent youth when studying. Totoro pointed it out first - a lead definitely worth considering.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 202991, member: 1991"] Lizzie, I'll ask the mother of the boy we know, to see if she's come across this odd 3-month-long behaviour change in young adults. She's very involved in Aussie PWS support networks. Risperdal & sedation - it seemed to be very individual. difficult child 1 was zonked out by quarter of a tablet, difficult child 3 took much more (eventually four times the dose and more) with no sedation, despite being less than half the weight of his big brother. Your son's delayed diagnosis - I'm wondering if he doesn't have full expression of the gene. This can happen with genetic abnormality, depending on exactly how the gene is usually expressed. Or there could be something else caught up with it. Again, I'm going to talk to my friend. I actually learned about PWS not from her but years ago, when I studied endocrinology (as part of a physiology course). She has taught me more - I was never taught about the regurgitation problems, for example. That just adds to the hassles, with pica (which her son has currently, badly). Despite the hassles it still seems to me that an endocrinologist is the best overall person for you. I just can't fathom why he's not referring you to a psychiatrist. Unless he already knows they will refuse to treat him if there's the slightest hint that it could be due to the PWS. He may already know the bloke down the corridor and doesn't want to waste your time. I would assume you've run this mood change problem past the endocrinologist - is there a chance it's related to melatonin? You're in Dublin and have short winter days, shorter than a lot of people have. What sort of lighting is your son exposed to? If you could look into melatonin as a possibility, maybe install some fluorescent lighting with a higher than usual UV output and make sure they're on for extra hours in the evenings and mornings and get him outdoors during the middle of the day every day - if he still develops this mood change problem, then at least you will know you've ruled out the winter effect. But you might be able to reduce it, melatonin may still be a partial factor. I'll do some digging, see what I can find. It's not a problem for us in Sydney, but again - something I learned about back in my misspent youth when studying. Totoro pointed it out first - a lead definitely worth considering. Marg [/QUOTE]
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