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Poor little brown child...phase
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<blockquote data-quote="susiestar" data-source="post: 386788" data-attributes="member: 1233"><p>As the others have said, Prader-Willi is something that you need to have difficult child tested for. He does carry some signs for it. He also may have some other genetic problem and/or developmental problems/delays. It almost seems like he has PW mixed with something else. Genetic disorders are hard to completely understand. It is entirely possible for 2 chromosomes to swap sections of their genetic material, which can cause some very interesting things. I have "funky" vertebrae, some degree of red-green color-blindness (I see light shades of green and pink as white, and the very dark shades look black to me, but the middle hues I see clearly. I was in a study in college and learned that I have these traits, and several other minor things that are only passed along on the Y chromosomes because small sections of my dna traded places. Most of the dna that switched in my case is not for any purpose that we have yet identified/understood. The only ones that expressed in my body/mind are for minor things like a small degree of colorblindness. </p><p> </p><p>There is SOMETHING going on with your son that the docs have not caught. If you can compile ALL the info that you have on/about your difficult child into a Parent Report you will be able to express the problems more clearly to those professionals who will help you. A Parent Report is a document that you write about your child. You include everything - hopes and dreams (yours and his), what the biggest and smallest problems are, how you handle them, what is and isn't working with regard to coping with him, how he is with peers, school, siblings, parents, pets, and more. A few wise moms here came up with the outline and it is wonderfully effective at making sure that the people who are workign with your difficult child have all the info they need. (It also helps filling in all those little boxes in the intake forms, the ones that drive you nuts - or at least drive ME nuts, lol!) </p><p> </p><p>You can find a link to the Parent Report in my signature and in the sticky thread for new members in the general forum. Don't try to complete the report all at one time. Work on it in sections. If you can, put a photo of your difficult child at the beginning of each segment of the report. Having his photo copied into the report will let the doctors remember <em>which</em> child is the one you are talking about in the report. I have found that docs are a lot more likely to remember which medications we have tried and why we stopped them, and the same for other therapies, FAR better if the report they read has photos of my difficult child in them.</p><p> </p><p>Whatever is going on with difficult child, he likely cannot help getting into the food. Make sure that you have an endocrinologist, neurologist, and a geneticist (doctor). You will likely need a nutritionist, psychiatrist and therapist to help work everything out. And us, of COURSE!!! WE give you the moral support and all the help we can !!</p></blockquote><p></p>
[QUOTE="susiestar, post: 386788, member: 1233"] As the others have said, Prader-Willi is something that you need to have difficult child tested for. He does carry some signs for it. He also may have some other genetic problem and/or developmental problems/delays. It almost seems like he has PW mixed with something else. Genetic disorders are hard to completely understand. It is entirely possible for 2 chromosomes to swap sections of their genetic material, which can cause some very interesting things. I have "funky" vertebrae, some degree of red-green color-blindness (I see light shades of green and pink as white, and the very dark shades look black to me, but the middle hues I see clearly. I was in a study in college and learned that I have these traits, and several other minor things that are only passed along on the Y chromosomes because small sections of my dna traded places. Most of the dna that switched in my case is not for any purpose that we have yet identified/understood. The only ones that expressed in my body/mind are for minor things like a small degree of colorblindness. There is SOMETHING going on with your son that the docs have not caught. If you can compile ALL the info that you have on/about your difficult child into a Parent Report you will be able to express the problems more clearly to those professionals who will help you. A Parent Report is a document that you write about your child. You include everything - hopes and dreams (yours and his), what the biggest and smallest problems are, how you handle them, what is and isn't working with regard to coping with him, how he is with peers, school, siblings, parents, pets, and more. A few wise moms here came up with the outline and it is wonderfully effective at making sure that the people who are workign with your difficult child have all the info they need. (It also helps filling in all those little boxes in the intake forms, the ones that drive you nuts - or at least drive ME nuts, lol!) You can find a link to the Parent Report in my signature and in the sticky thread for new members in the general forum. Don't try to complete the report all at one time. Work on it in sections. If you can, put a photo of your difficult child at the beginning of each segment of the report. Having his photo copied into the report will let the doctors remember [I]which[/I] child is the one you are talking about in the report. I have found that docs are a lot more likely to remember which medications we have tried and why we stopped them, and the same for other therapies, FAR better if the report they read has photos of my difficult child in them. Whatever is going on with difficult child, he likely cannot help getting into the food. Make sure that you have an endocrinologist, neurologist, and a geneticist (doctor). You will likely need a nutritionist, psychiatrist and therapist to help work everything out. And us, of COURSE!!! WE give you the moral support and all the help we can !! [/QUOTE]
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