Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 > ... My concern is that > now Robbie is better during the day but gets a nightly fever. This > sometimes includes chills. This new symptom has only started since the > 2nd ERCP. Is this normal in PSC ? Yes, fevers with chills happen frequently with PSC. They are not normal and should be brought to your doctors attention for treatment. If Robbie is already taking antibiotics perhaps a different one is needed - he may even need to have a course of IV antibiotics. If bile samples were taken during the ERCP and cultured, they should have a very good idea of what bacteria are present and to what antibiotics they are resistant so the infection can be targeted. If no bile samples were taken ask why not. Tim R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 wILL GET THAT checked straight away, but bile samples weren't taken. Can i still be an infection if the fever presents only at night ? Shouldn't he be sick during the day too ? Leah > > > > ... My concern is that > > now Robbie is better during the day but gets a nightly fever. This > > sometimes includes chills. This new symptom has only started since > the > > 2nd ERCP. Is this normal in PSC ? > > Yes, fevers with chills happen frequently with PSC. They are not > normal and should be brought to your doctors attention for treatment. > If Robbie is already taking antibiotics perhaps a different one is > needed - he may even need to have a course of IV antibiotics. If bile > samples were taken during the ERCP and cultured, they should have a > very good idea of what bacteria are present and to what antibiotics > they are resistant so the infection can be targeted. If no bile > samples were taken ask why not. > > Tim R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 wILL GET THAT checked straight away, but bile samples weren't taken. Can i still be an infection if the fever presents only at night ? Shouldn't he be sick during the day too ? Leah > > > > ... My concern is that > > now Robbie is better during the day but gets a nightly fever. This > > sometimes includes chills. This new symptom has only started since > the > > 2nd ERCP. Is this normal in PSC ? > > Yes, fevers with chills happen frequently with PSC. They are not > normal and should be brought to your doctors attention for treatment. > If Robbie is already taking antibiotics perhaps a different one is > needed - he may even need to have a course of IV antibiotics. If bile > samples were taken during the ERCP and cultured, they should have a > very good idea of what bacteria are present and to what antibiotics > they are resistant so the infection can be targeted. If no bile > samples were taken ask why not. > > Tim R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 wILL GET THAT checked straight away, but bile samples weren't taken. Can i still be an infection if the fever presents only at night ? Shouldn't he be sick during the day too ? Leah > > > > ... My concern is that > > now Robbie is better during the day but gets a nightly fever. This > > sometimes includes chills. This new symptom has only started since > the > > 2nd ERCP. Is this normal in PSC ? > > Yes, fevers with chills happen frequently with PSC. They are not > normal and should be brought to your doctors attention for treatment. > If Robbie is already taking antibiotics perhaps a different one is > needed - he may even need to have a course of IV antibiotics. If bile > samples were taken during the ERCP and cultured, they should have a > very good idea of what bacteria are present and to what antibiotics > they are resistant so the infection can be targeted. If no bile > samples were taken ask why not. > > Tim R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 > > wILL GET THAT checked straight away, > Leah Hi Leah, so sorry to hear you and Robbie are being thrown in the 'deep end' with PSC. I do hope you have family and friends supporting you and your little ones in this stressful time. Best wishes and I am sure with all the information you are obtaining you will be able to feel very confident with approaching the medical fraternity. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 > > wILL GET THAT checked straight away, > Leah Hi Leah, so sorry to hear you and Robbie are being thrown in the 'deep end' with PSC. I do hope you have family and friends supporting you and your little ones in this stressful time. Best wishes and I am sure with all the information you are obtaining you will be able to feel very confident with approaching the medical fraternity. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 > > wILL GET THAT checked straight away, > Leah Hi Leah, so sorry to hear you and Robbie are being thrown in the 'deep end' with PSC. I do hope you have family and friends supporting you and your little ones in this stressful time. Best wishes and I am sure with all the information you are obtaining you will be able to feel very confident with approaching the medical fraternity. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Thanks .We are in fact lacking 'at hand' family support so much that we are seriously considering coming back home (NZ). That is not so easy as we sold our house, etc etc and left thinking that we would be away for a while and would simply buy again when we return 10 years down the line.Further Robbie is adamant that he won't let his career suffer and all my 'all thats important is health' doesn't go down too well with him.Will see how it goes, but I am pushing for going back. Need family support desperately especially with a 20 month old and a 4 year old (both generally at home as childcare in Sydney has a long waiting list and we didn't enrol kindergarten in time - Tough when the 4-year old has been used to going to Kindy in Auckland) .In this situation I always counted on a lot of help from Robbie, but after the diagnosis, all I want him to do is relax and come home to a 'CALM' under control situation at home.Need Mum and Dad.They are coming in the next few days and will stay 2 weeks. Leah > > > > wILL GET THAT checked straight away, > > Leah > > Hi Leah, so sorry to hear you and Robbie are being thrown in the 'deep > end' with PSC. I do hope you have family and friends supporting you > and your little ones in this stressful time. > Best wishes and I am sure with all the information you are obtaining > you will be able to feel very confident with approaching the medical > fraternity. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 prichsy wrote: >Can i still be an infection if the fever presents only at night ? >Shouldn't he be sick during the day too ? > > When I get an infection it always tends to be worse at night. During the day (especially the morning) I generally feel better, at least as far as the fever is concerned. For me, the nausea etc. that often comes with an blockage of the bile ducts is worst in the morning, while fever is worst in the evening and night. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 prichsy wrote: >Can i still be an infection if the fever presents only at night ? >Shouldn't he be sick during the day too ? > > When I get an infection it always tends to be worse at night. During the day (especially the morning) I generally feel better, at least as far as the fever is concerned. For me, the nausea etc. that often comes with an blockage of the bile ducts is worst in the morning, while fever is worst in the evening and night. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 prichsy wrote: >Can i still be an infection if the fever presents only at night ? >Shouldn't he be sick during the day too ? > > When I get an infection it always tends to be worse at night. During the day (especially the morning) I generally feel better, at least as far as the fever is concerned. For me, the nausea etc. that often comes with an blockage of the bile ducts is worst in the morning, while fever is worst in the evening and night. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > we are seriously considering coming back home (NZ). > Need family support desperately all I want him to do is relax and >come home to a 'CALM' under control > situation at home.Need Mum and Dad.They are coming in the next few > days and will stay 2 weeks. > Leah Hi Leah You are in an awful prediciment. One part of me would urge you to stay in Sydney as the medical profession would be more experienced in dealing with PSC, just because they have more population. I think the figures are PSC has a prevelance of approximately 20.9 cases per 100,000 , which makes approximately 800 of us in New Zealand, but Australia with a population of 20 million makes 4,000 with PSC. The other part of me would want you come home, to enjoy being together as family with lots of support, you must be exhausted looking after your 2 wee ones, trying to keep things as CALM as possible, finding your way around a new neighbourhood and coping with Robbie's chronic illness all in a new country. Just a thought, have you looked up your local Citizens Advice Bureau, hopefully they may be able to point you in the right direction to join up with a 'Mums Group' or put you in touch with someone to help you with the little things that need 2 to, like supermarket shopping, swimming etc during the day. I hope there would be lots of people who would be able to help. It must have been a quick decision to give Robbie another ERCP. Did he get through it OK and have you dragged him back to get his chills and fevers checked out? Do enjoy your Mum and Dads visit. Best wishes , do feel free to email me at grahammilligan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > we are seriously considering coming back home (NZ). > Need family support desperately all I want him to do is relax and >come home to a 'CALM' under control > situation at home.Need Mum and Dad.They are coming in the next few > days and will stay 2 weeks. > Leah Hi Leah You are in an awful prediciment. One part of me would urge you to stay in Sydney as the medical profession would be more experienced in dealing with PSC, just because they have more population. I think the figures are PSC has a prevelance of approximately 20.9 cases per 100,000 , which makes approximately 800 of us in New Zealand, but Australia with a population of 20 million makes 4,000 with PSC. The other part of me would want you come home, to enjoy being together as family with lots of support, you must be exhausted looking after your 2 wee ones, trying to keep things as CALM as possible, finding your way around a new neighbourhood and coping with Robbie's chronic illness all in a new country. Just a thought, have you looked up your local Citizens Advice Bureau, hopefully they may be able to point you in the right direction to join up with a 'Mums Group' or put you in touch with someone to help you with the little things that need 2 to, like supermarket shopping, swimming etc during the day. I hope there would be lots of people who would be able to help. It must have been a quick decision to give Robbie another ERCP. Did he get through it OK and have you dragged him back to get his chills and fevers checked out? Do enjoy your Mum and Dads visit. Best wishes , do feel free to email me at grahammilligan@... Quote Link to comment Share on other sites More sharing options...
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