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General Parenting
Prader Willi Syndrome
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<blockquote data-quote="lizzie09" data-source="post: 202173" data-attributes="member: 8006"><p>Thank you all for kind words.</p><p>I have had a go at the signature so hope you get an idea about me.</p><p>Ds 1 PWS is 22 and in the last 4 yrs has developed behavioural issues that have a psychiatric twist. I could not get any help for this as doctors said it was not psychiatric but behavioural connected to syndrome.</p><p>We have been lucky that food was never a major problem but I must say these episodes of behaviour are daunting.</p><p>They first happened when he left school in 2005 and for three mts we had odd difficult behaviour. It was new to us so we worked through it and after a year of looking for a suitable day placement he was offered a place to start the following Sep one year after leaving school. As soon as the placement was sorted the odd behavior started again so we felt it was related to stress. Once again the phase lasted 12 to 14 mth during which I was suddenly taken ill and needed a hysterectomy. This sort of brought things to a head as a respite place was offered as I was not at home.</p><p>Once again last year for 3mths we had a similar episode and at the moment I am very uptight as I suspect another is beginning.</p><p>It seems there is a cycle format to these episodes that occur once a year and last approx 3mths.</p><p>Overall this poor boy is fine but when he acts odd like I have said he loses credibility/ I fell he has no control over this but cannot help blaming him when I am up the walls!!! There has never been any medication offered or advised but<em> have recently got Xanax from GP to have handy</em></p><p><em>His siblings are youngerr though now young men and all our lives can be very disrupted when this happens.</em></p><p><em>|Thank you for reading this.</em></p></blockquote><p></p>
[QUOTE="lizzie09, post: 202173, member: 8006"] Thank you all for kind words. I have had a go at the signature so hope you get an idea about me. Ds 1 PWS is 22 and in the last 4 yrs has developed behavioural issues that have a psychiatric twist. I could not get any help for this as doctors said it was not psychiatric but behavioural connected to syndrome. We have been lucky that food was never a major problem but I must say these episodes of behaviour are daunting. They first happened when he left school in 2005 and for three mts we had odd difficult behaviour. It was new to us so we worked through it and after a year of looking for a suitable day placement he was offered a place to start the following Sep one year after leaving school. As soon as the placement was sorted the odd behavior started again so we felt it was related to stress. Once again the phase lasted 12 to 14 mth during which I was suddenly taken ill and needed a hysterectomy. This sort of brought things to a head as a respite place was offered as I was not at home. Once again last year for 3mths we had a similar episode and at the moment I am very uptight as I suspect another is beginning. It seems there is a cycle format to these episodes that occur once a year and last approx 3mths. Overall this poor boy is fine but when he acts odd like I have said he loses credibility/ I fell he has no control over this but cannot help blaming him when I am up the walls!!! There has never been any medication offered or advised but[I] have recently got Xanax from GP to have handy[/I] [I]His siblings are youngerr though now young men and all our lives can be very disrupted when this happens.[/I] [I]|Thank you for reading this.[/I] [/QUOTE]
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