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Prader Willi Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 216603" data-attributes="member: 1991"><p>I'm not affected by Thanksgiving, it's just an ordinary day for us (besides, it's Friday here!). But I don't know about those medications specifically, plus I have no personal experience with BiPolar (BP).</p><p></p><p>However, some thoughts here and some ideas:</p><p></p><p>First, the information on these drugs needs to take into account WHY there is any possible connection to weight gain. This could link in to the flip side of PWS - if a drug increases appetite, say, by stimulating the appetite centre in the hypothalamus then chances are it will actually have no effect in PWS.</p><p></p><p>You need to ask specific enquiries about these medications. The internet CAN help but you may need an expert to analyse the findings. But you should also have access to people who can give you the answers more personally.</p><p>So first, try asking your local pharmacist, the one who is dispensing the medications. Or if the doctor organised the prescriptions away from your usual pharmacist, still feel free to go to your local chemist and ask him/her to try to give you more specific information. (We do our best to always use the same pharmacist to dispense medications for our family, but of course it's not always possible. Our state-based health system in Australia allows us to take our business anywhere, but it's easier to manage the paperwork if we keep it local; plus we believe in supporting local business, so we leave all our prescription repeats with our mate down the road, if we need a fresh supply it's just a quick phone call without me having to rummage through our papers at home because our papers are all at the shop. He then has a copy of all our medication expenses and will print it out for us at tax return time).</p><p>So ask your pharmacist to specifically dig for HOW these medications cause increase in appetite. </p><p></p><p>Second option (which you can try concurrently) - call the drug company and ask to speak to their advisors. Explain that you have an unusual case and want to know whether the mode of action or even the side effects at any point require the involvement of the hypothalamus.</p><p></p><p>We know in PWS that only parts of the hypothalamus don't work properly. Other bits MUST be working or the problems would be much worse. The information you need here involves an understanding of biochemistry plus physiology. The product development experts at the drug company should have this knowledge, but may not know a great deal about PWS and this is where you need to help. They will know who to ask.</p><p></p><p>In case you're not sure who to call, check the box of pills. It should give the company name and hopefully also contact information. Most drug companies have a toll free number you can call.</p><p></p><p>I've had to do this a number of times when I've been concerned about possible allergy problems or drug interactions,; it's their job to make sure you have someone to advise you in such curly questions.</p><p></p><p>As for your son - this is weird. When you told me about this before, I did wonder if this was going to happen again. It's fascinating, or would be if it weren't so worrying for you.</p><p></p><p>I'm not so sure if BiPolar (BP) is the entire answer, but it's all you've got at the moment and it's worth a try. You need to do the "cooperative patient" bit, as I call it, in the same way I did my best to lose weight when my doctor told me that I had to lose weight so my liver would begin to recover. I've now lost the weight and my liver is still in bad shape - so it means I can go back to my specialist in a couple of months and say, "Ok, - NOW what do we try?"</p><p></p><p>With your son, this needs to be checked out and tried, I think. But if it's not tha answer, then at least this will have been thoroughly checked out and ruled out. Fewer possibilities left.</p><p></p><p>Have his serotonin and melatonin levels been checked out? I think we talked about this last time you posted about this. You're heading into winter, the days are getting shorter and there is a condition where reduced daylight hours triggers a drop in hormone levels which can trigger behaviour changes including depression. We know PWS people have some odd hormone things going on anyway so it may make your son more sensitive than a lot of people are, even though in some areas hormonally he's less sensitive.</p><p></p><p>I hope it all turns out that you don't have any weight gain problems with him - at least no more than you already have anyway.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 216603, member: 1991"] I'm not affected by Thanksgiving, it's just an ordinary day for us (besides, it's Friday here!). But I don't know about those medications specifically, plus I have no personal experience with BiPolar (BP). However, some thoughts here and some ideas: First, the information on these drugs needs to take into account WHY there is any possible connection to weight gain. This could link in to the flip side of PWS - if a drug increases appetite, say, by stimulating the appetite centre in the hypothalamus then chances are it will actually have no effect in PWS. You need to ask specific enquiries about these medications. The internet CAN help but you may need an expert to analyse the findings. But you should also have access to people who can give you the answers more personally. So first, try asking your local pharmacist, the one who is dispensing the medications. Or if the doctor organised the prescriptions away from your usual pharmacist, still feel free to go to your local chemist and ask him/her to try to give you more specific information. (We do our best to always use the same pharmacist to dispense medications for our family, but of course it's not always possible. Our state-based health system in Australia allows us to take our business anywhere, but it's easier to manage the paperwork if we keep it local; plus we believe in supporting local business, so we leave all our prescription repeats with our mate down the road, if we need a fresh supply it's just a quick phone call without me having to rummage through our papers at home because our papers are all at the shop. He then has a copy of all our medication expenses and will print it out for us at tax return time). So ask your pharmacist to specifically dig for HOW these medications cause increase in appetite. Second option (which you can try concurrently) - call the drug company and ask to speak to their advisors. Explain that you have an unusual case and want to know whether the mode of action or even the side effects at any point require the involvement of the hypothalamus. We know in PWS that only parts of the hypothalamus don't work properly. Other bits MUST be working or the problems would be much worse. The information you need here involves an understanding of biochemistry plus physiology. The product development experts at the drug company should have this knowledge, but may not know a great deal about PWS and this is where you need to help. They will know who to ask. In case you're not sure who to call, check the box of pills. It should give the company name and hopefully also contact information. Most drug companies have a toll free number you can call. I've had to do this a number of times when I've been concerned about possible allergy problems or drug interactions,; it's their job to make sure you have someone to advise you in such curly questions. As for your son - this is weird. When you told me about this before, I did wonder if this was going to happen again. It's fascinating, or would be if it weren't so worrying for you. I'm not so sure if BiPolar (BP) is the entire answer, but it's all you've got at the moment and it's worth a try. You need to do the "cooperative patient" bit, as I call it, in the same way I did my best to lose weight when my doctor told me that I had to lose weight so my liver would begin to recover. I've now lost the weight and my liver is still in bad shape - so it means I can go back to my specialist in a couple of months and say, "Ok, - NOW what do we try?" With your son, this needs to be checked out and tried, I think. But if it's not tha answer, then at least this will have been thoroughly checked out and ruled out. Fewer possibilities left. Have his serotonin and melatonin levels been checked out? I think we talked about this last time you posted about this. You're heading into winter, the days are getting shorter and there is a condition where reduced daylight hours triggers a drop in hormone levels which can trigger behaviour changes including depression. We know PWS people have some odd hormone things going on anyway so it may make your son more sensitive than a lot of people are, even though in some areas hormonally he's less sensitive. I hope it all turns out that you don't have any weight gain problems with him - at least no more than you already have anyway. Marg [/QUOTE]
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