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Prader Willi Syndrome
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<blockquote data-quote="lizzie09" data-source="post: 203080" data-attributes="member: 8006"><p>Hello again Marg</p><p>In relation to the endocrinologist...for the last two yrs we have had the adult hospital service for our son. The endocrinologist is extraordinary in so far as he appears to have no interest in the overall syndrome. He doesnt even weigh my son and really just asks for bloods to be done every 6mths I suppose because of the growth hormone though its now finished. Testosteone is a bit low too. Endo is not interested in big picture. When we appeared in April last routine I expressed my disappointment over the dept lack of support during the episode in Octiber. At that time I arrived to this Endo dept tro see the doctor with my aggitated son this was not by app but I was desperate. and I was turned away!!! How mad is that (and it was mad! believe me) The hospital psychiatric only dealt with people living in that catchment area and I was not. I was told to go back to the Mental Helath facility/hos which I had already dealt with in 2006 and was turned away from there....ne medication no help whatsoever. I once again told the Endo about this and then he said the Day Service provider had the part time doctor ( the one that looked for elipepsy tests) and he should look after the issue.</p><p>What I need and do not have is a multidisciplinary team on board and at adult level; it does not exist here.</p><p>In Paediatrics there was a fantastic lady doctor, it appears the only one with real knowledge of the syndrome. She was the one who eventually diagnosed my son.</p><p>Unfortunately during the eight yrs attending her clinic and getting GH treatment we had no real problems at all.</p><p>I found it very hard to be civil to this adult Endo man and I told him he had let me down and my family in my time of need. I am sure he could have helped....he had to know someone,</p><p>He had no great answers for me when I asked him how many other patients with the syndrome did he have on his books. I asked this to see if anyone had problems like we had.</p><p>At that point he more or less told me a yearly visit would me more than enough as he could nothing for me but the bloods as I explained.</p><p>I felt he was peeved with me but what the heck! He saw me trying to keep tabs on my son iin his waiting room last Ocotber in dire straits and then he turned me away. Even the admin staff were better and tried to get me ap with psychiatric but failed beacuse of catchment area,</p><p>This hospital is one of the few that have expertise in these kind of disorders so there is no point in my going to my local hospital dpwn the road.</p><p>Isnt it mad?Day service doctor is retired from practice and seems to visit this place now and then, I feel I need to have a team that I can contact.</p><p>No point in looking for anti psychotic medication if I cannot contact anyone about possible adverse results.</p><p>If this episode happens again I suppose I at least have this elderly man in the serv who will have to help....or will he? With my experience of late I stand alone.</p><p>They say noone wants to take on the psychiatric treatment of PWS as its too complicated!!!!!!!!</p><p> </p><p> </p><p>I am ranting here now as I so clearly see myself and son almost a year ago to the day wandering around that hospital begging for help. Think of the effect that had on my son as we drove sadly away with nothing.</p><p>He said...Mum, why can you not help me!!!! In his eyed I had failed and of course he could not understand that it was the system that failed him.</p><p> </p><p> </p><p>Hope your eyes still work after reading this rant!!!!</p></blockquote><p></p>
[QUOTE="lizzie09, post: 203080, member: 8006"] Hello again Marg In relation to the endocrinologist...for the last two yrs we have had the adult hospital service for our son. The endocrinologist is extraordinary in so far as he appears to have no interest in the overall syndrome. He doesnt even weigh my son and really just asks for bloods to be done every 6mths I suppose because of the growth hormone though its now finished. Testosteone is a bit low too. Endo is not interested in big picture. When we appeared in April last routine I expressed my disappointment over the dept lack of support during the episode in Octiber. At that time I arrived to this Endo dept tro see the doctor with my aggitated son this was not by app but I was desperate. and I was turned away!!! How mad is that (and it was mad! believe me) The hospital psychiatric only dealt with people living in that catchment area and I was not. I was told to go back to the Mental Helath facility/hos which I had already dealt with in 2006 and was turned away from there....ne medication no help whatsoever. I once again told the Endo about this and then he said the Day Service provider had the part time doctor ( the one that looked for elipepsy tests) and he should look after the issue. What I need and do not have is a multidisciplinary team on board and at adult level; it does not exist here. In Paediatrics there was a fantastic lady doctor, it appears the only one with real knowledge of the syndrome. She was the one who eventually diagnosed my son. Unfortunately during the eight yrs attending her clinic and getting GH treatment we had no real problems at all. I found it very hard to be civil to this adult Endo man and I told him he had let me down and my family in my time of need. I am sure he could have helped....he had to know someone, He had no great answers for me when I asked him how many other patients with the syndrome did he have on his books. I asked this to see if anyone had problems like we had. At that point he more or less told me a yearly visit would me more than enough as he could nothing for me but the bloods as I explained. I felt he was peeved with me but what the heck! He saw me trying to keep tabs on my son iin his waiting room last Ocotber in dire straits and then he turned me away. Even the admin staff were better and tried to get me ap with psychiatric but failed beacuse of catchment area, This hospital is one of the few that have expertise in these kind of disorders so there is no point in my going to my local hospital dpwn the road. Isnt it mad?Day service doctor is retired from practice and seems to visit this place now and then, I feel I need to have a team that I can contact. No point in looking for anti psychotic medication if I cannot contact anyone about possible adverse results. If this episode happens again I suppose I at least have this elderly man in the serv who will have to help....or will he? With my experience of late I stand alone. They say noone wants to take on the psychiatric treatment of PWS as its too complicated!!!!!!!! I am ranting here now as I so clearly see myself and son almost a year ago to the day wandering around that hospital begging for help. Think of the effect that had on my son as we drove sadly away with nothing. He said...Mum, why can you not help me!!!! In his eyed I had failed and of course he could not understand that it was the system that failed him. Hope your eyes still work after reading this rant!!!! [/QUOTE]
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