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Prader Willi Syndrome
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<blockquote data-quote="lizzie09" data-source="post: 202923" data-attributes="member: 8006"><p>Dont know what happened with my last post as it jumped away!!</p><p>The second opinion ruled out PWS but as he did not grow very well and had learning issues I went to yet another hospital. I had been everywhere over the eleven years looking for information and got nothing</p><p>At the last hospital the professor was an endocrinologist and specialist in childhood disabilities. She ordered more chromosomal tests etc and the results came back positive for PWS. It was a bit of a fright at that stage as I had hoped but secretly feared the worst all along.</p><p>Growth hormone therapy was introduced and had marvellous results with growth and muscle development as he was quite untoned. He was at this stage 11yrs old.</p><p>Overall he looked wonderful on GH.</p><p>It was only at about 18 that some behaviour issues became evident. He appeared more stubborn at times but was overallc ooperative. Gradually as leaving school approached he seemed to get mood variation as I have explained and then in 2005 we saw the first of the odd 3mth length disturbances. Clearing up completely without medication and returning almost a year later to the day of the onset. The second time 2006 I sought help from the family doctor, Our son was still attending the paediatric endocrinologist and GH had stopped. The doctor would not prescribe and referred us to the district Family centre for Psychiatric Disorders. When we got our Ap psychiatric said he would do nothing as it was disability and not psychiatric....this was just daft as all our lives were up in a heap and I had children sitting state exams. It was a difficult time.</p><p>The next year last year my son was in his placement for young adults when he had his mood change. They have a psychiatric on board there but he thought son m ight have epilepsy and would not prescibe until we agreed to have tests done .....so we suffered 3mth as it was impossible to get en EEG private or otherwise before this.</p><p>I felt very bitter, At this stage we were attending the adult hospital endocrinologist and he could offer n o help or refferal to psychiatric private or public as no one was versed enough with the syndrome and would not take it on board, All we could do was depend on our day service and the elderly doctor there to prescribe and we had to wait till EEG was done This was normal but the mood had passed at that stage. We had no need then to medicate,</p><p>Now we are a year later down the road and all has been well....however as you can imagine I am extremely nervous of what each day brings. I noticed he was a bit hyper last Thursday but in the end I gave him a Xanax tab I had from last year from family doctor and it settled him down fine,,</p><p> </p><p>There is a huge gap here in the mental health service for disability.</p><p>No psch hospital that treat normal people for want of a better word will treat people with disability.</p><p>The adult endocrinologist has admitted it really is a waste of my time to continue my visits to him 6 monthly as he only monitor his general health and hormone levels.</p><p>We will not or cannot send me to a doctor down the corridor that can help our poor son and all our family cope with this syndrome.</p><p>If a full blown episodes explodes soon I suspect the doctor in the day service will prescribe zYPREXIA he does not like Risperidol which is more documented for \PWS but I suppose I could plead for the first, They are similar drugs.</p><p>As to whether my son would be zonked or mildly sedated I dont know.</p><p>At the moment all is well and I wait in terror for the next time and what might be our fate along the road of medication</p><p> </p><p>Many thanks again Marg and all who have put such thought into their replies</p><p> </p><p>I wonder about the amount of Risperidol that might be zonking? I know its different for each individual. I think there is a maintenance dose but if we were to use Risperidol would it be reasonable to expect to come off it as we are OK for such long periods?</p></blockquote><p></p>
[QUOTE="lizzie09, post: 202923, member: 8006"] Dont know what happened with my last post as it jumped away!! The second opinion ruled out PWS but as he did not grow very well and had learning issues I went to yet another hospital. I had been everywhere over the eleven years looking for information and got nothing At the last hospital the professor was an endocrinologist and specialist in childhood disabilities. She ordered more chromosomal tests etc and the results came back positive for PWS. It was a bit of a fright at that stage as I had hoped but secretly feared the worst all along. Growth hormone therapy was introduced and had marvellous results with growth and muscle development as he was quite untoned. He was at this stage 11yrs old. Overall he looked wonderful on GH. It was only at about 18 that some behaviour issues became evident. He appeared more stubborn at times but was overallc ooperative. Gradually as leaving school approached he seemed to get mood variation as I have explained and then in 2005 we saw the first of the odd 3mth length disturbances. Clearing up completely without medication and returning almost a year later to the day of the onset. The second time 2006 I sought help from the family doctor, Our son was still attending the paediatric endocrinologist and GH had stopped. The doctor would not prescribe and referred us to the district Family centre for Psychiatric Disorders. When we got our Ap psychiatric said he would do nothing as it was disability and not psychiatric....this was just daft as all our lives were up in a heap and I had children sitting state exams. It was a difficult time. The next year last year my son was in his placement for young adults when he had his mood change. They have a psychiatric on board there but he thought son m ight have epilepsy and would not prescibe until we agreed to have tests done .....so we suffered 3mth as it was impossible to get en EEG private or otherwise before this. I felt very bitter, At this stage we were attending the adult hospital endocrinologist and he could offer n o help or refferal to psychiatric private or public as no one was versed enough with the syndrome and would not take it on board, All we could do was depend on our day service and the elderly doctor there to prescribe and we had to wait till EEG was done This was normal but the mood had passed at that stage. We had no need then to medicate, Now we are a year later down the road and all has been well....however as you can imagine I am extremely nervous of what each day brings. I noticed he was a bit hyper last Thursday but in the end I gave him a Xanax tab I had from last year from family doctor and it settled him down fine,, There is a huge gap here in the mental health service for disability. No psch hospital that treat normal people for want of a better word will treat people with disability. The adult endocrinologist has admitted it really is a waste of my time to continue my visits to him 6 monthly as he only monitor his general health and hormone levels. We will not or cannot send me to a doctor down the corridor that can help our poor son and all our family cope with this syndrome. If a full blown episodes explodes soon I suspect the doctor in the day service will prescribe zYPREXIA he does not like Risperidol which is more documented for \PWS but I suppose I could plead for the first, They are similar drugs. As to whether my son would be zonked or mildly sedated I dont know. At the moment all is well and I wait in terror for the next time and what might be our fate along the road of medication Many thanks again Marg and all who have put such thought into their replies I wonder about the amount of Risperidol that might be zonking? I know its different for each individual. I think there is a maintenance dose but if we were to use Risperidol would it be reasonable to expect to come off it as we are OK for such long periods? [/QUOTE]
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