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Prader Willi Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 202541" data-attributes="member: 1991"><p>Lizzie, you wrote, "I see risperidal as one of the medications you are involved with. Did you find that there was weight gain with this medication and what did you think of the positive effects it might have had. It is listed as suitable for mood disturbance in PWS too."</p><p></p><p>Risperdal does often lead to weight gain, but this is due to it increasing appetite. I don't know if this would happen with PWS - it would be an effect on the satiety centre in the hypothalamus and in PWS the satiety centre is already out of action, so I don't know if risperdal would make any difference. Maybe ask a pharmacist, or an endocrinologist, for more information. Or maybe even call the company that makes it and ask to speak to one of the chief chemists there? They would have a really good idea of exactly how their drug works and might be better able to advise you. You might have to explain to them how PWS 'works' in terms of hypothalamus function, but otherwise they should be able to help. It would be a surprising blessing due to the PWS, if the usual effect of increasing appetite didn't happen in PWS!</p><p></p><p>To explain to other CD members who don't know - Prader-Willi people gain weight for two main reasons:</p><p></p><p>1) They only need about two thirds of the calories of other people; and</p><p></p><p>2) The satiety centre in the hypothalamus, the bit that responds to both higher blood sugar levels and also feedback from a full stomach that tells us that we've eaten sufficient, just doesn't work. It seems to be permanently switched off, so to someone with Prader-Willi they are always hungry, they never feel that they have had enough to eat. In younger kids especially, this can be a real headache because they can be desperate to get at food (or anything else). They also can't vomit, there are other issues too. It's a cruel combination - you never know when you've had enough plus you have to actually eat less than other people so you always see other people eating more, it just doesn't seem fair. It's physiological, the neurological and hormonal pathways can be easily traced to show what is going on.</p><p></p><p>Lizzie, if your son is already as disciplined as this with food, you have done an amazing job with him. </p><p></p><p>Other possible effects of risperdal - it sedated difficult child 1 quite badly. It didn't do that at all to difficult child 3. So if you need to get your son moving to exercise, the risperdal MAY make it more difficult if it sedates him.</p><p>As for what it does - it helped calm out boys down a bit, it smoothed out their moods (the ups and downs) and reduced the anxiety, which in turn reduced some of the Obsessive Compulsive Disorder (OCD) problems. For us the benefit here was very small, but for others it can be quite a lot.</p><p></p><p>About the apparently seasonal problems - it could also be hormonal, linked to melatonin perhaps. Or changes in melatonin due to changes in season. The seasonal issues totoro was talking about in the previous post are connected to changes in melatonin secretion. Would an endocrinologist be worth seeing? With so many other aspects of PWS connected to the endocrine system, maybe this could be too.</p><p></p><p>The suggestion to keep a diary could lead to some good background info on other things connected to the changes you notice. If you can go back and document what you recall from past episodes it would be a good start. There are so many things to consider - the season, the location, the temperature, any change in foods, especially if you eat fresh vegetables in season - you could be changing foods due to change in season, and a seasonal fruit or vegetable could be causing a reaction. For example, we just had blood oranges in season, about a month ago. We only get these for a very short time each year and for about two or three weeks only. I bought some and put them in our spare fridge - I found them last week and put them in the fruit bowl, but they've been finished in the shops for the last month. And there are other fruits/vegetables which aren't even available in our shops - lemonade lemons, spaghetti squash, various heirloom tomatoes - he could be getting a reaction to a food like this that maybe you don't buy often because it's highly seasonal, or maybe a friend/relative/neighbour has given you some home-grown produce which perhaps they do every year at the same time.</p><p></p><p>A diary would pinpoint this. </p><p>Example - a diary could show an outing to a particular place or a particular group maybe once or twice a year, and this could be exposing him to something that triggers a sensitivity reaction or similar.</p><p></p><p>Sometimes it's just a matter of getting input from others in his life as well, a sort of long-term brainstorming session.</p><p></p><p>Here's hoping you can get some answers.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 202541, member: 1991"] Lizzie, you wrote, "I see risperidal as one of the medications you are involved with. Did you find that there was weight gain with this medication and what did you think of the positive effects it might have had. It is listed as suitable for mood disturbance in PWS too." Risperdal does often lead to weight gain, but this is due to it increasing appetite. I don't know if this would happen with PWS - it would be an effect on the satiety centre in the hypothalamus and in PWS the satiety centre is already out of action, so I don't know if risperdal would make any difference. Maybe ask a pharmacist, or an endocrinologist, for more information. Or maybe even call the company that makes it and ask to speak to one of the chief chemists there? They would have a really good idea of exactly how their drug works and might be better able to advise you. You might have to explain to them how PWS 'works' in terms of hypothalamus function, but otherwise they should be able to help. It would be a surprising blessing due to the PWS, if the usual effect of increasing appetite didn't happen in PWS! To explain to other CD members who don't know - Prader-Willi people gain weight for two main reasons: 1) They only need about two thirds of the calories of other people; and 2) The satiety centre in the hypothalamus, the bit that responds to both higher blood sugar levels and also feedback from a full stomach that tells us that we've eaten sufficient, just doesn't work. It seems to be permanently switched off, so to someone with Prader-Willi they are always hungry, they never feel that they have had enough to eat. In younger kids especially, this can be a real headache because they can be desperate to get at food (or anything else). They also can't vomit, there are other issues too. It's a cruel combination - you never know when you've had enough plus you have to actually eat less than other people so you always see other people eating more, it just doesn't seem fair. It's physiological, the neurological and hormonal pathways can be easily traced to show what is going on. Lizzie, if your son is already as disciplined as this with food, you have done an amazing job with him. Other possible effects of risperdal - it sedated difficult child 1 quite badly. It didn't do that at all to difficult child 3. So if you need to get your son moving to exercise, the risperdal MAY make it more difficult if it sedates him. As for what it does - it helped calm out boys down a bit, it smoothed out their moods (the ups and downs) and reduced the anxiety, which in turn reduced some of the Obsessive Compulsive Disorder (OCD) problems. For us the benefit here was very small, but for others it can be quite a lot. About the apparently seasonal problems - it could also be hormonal, linked to melatonin perhaps. Or changes in melatonin due to changes in season. The seasonal issues totoro was talking about in the previous post are connected to changes in melatonin secretion. Would an endocrinologist be worth seeing? With so many other aspects of PWS connected to the endocrine system, maybe this could be too. The suggestion to keep a diary could lead to some good background info on other things connected to the changes you notice. If you can go back and document what you recall from past episodes it would be a good start. There are so many things to consider - the season, the location, the temperature, any change in foods, especially if you eat fresh vegetables in season - you could be changing foods due to change in season, and a seasonal fruit or vegetable could be causing a reaction. For example, we just had blood oranges in season, about a month ago. We only get these for a very short time each year and for about two or three weeks only. I bought some and put them in our spare fridge - I found them last week and put them in the fruit bowl, but they've been finished in the shops for the last month. And there are other fruits/vegetables which aren't even available in our shops - lemonade lemons, spaghetti squash, various heirloom tomatoes - he could be getting a reaction to a food like this that maybe you don't buy often because it's highly seasonal, or maybe a friend/relative/neighbour has given you some home-grown produce which perhaps they do every year at the same time. A diary would pinpoint this. Example - a diary could show an outing to a particular place or a particular group maybe once or twice a year, and this could be exposing him to something that triggers a sensitivity reaction or similar. Sometimes it's just a matter of getting input from others in his life as well, a sort of long-term brainstorming session. Here's hoping you can get some answers. Marg [/QUOTE]
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