Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 DId they say why? This is yet another nasty example of our kids being marginalised Mx took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 DId they say why? This is yet another nasty example of our kids being marginalised Mx took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 DId they say why? This is yet another nasty example of our kids being marginalised Mx took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 You're not alone, this is precisely what we've had time and again. We've been told that as they're not nhs tests so they can't go by them, that there is good and bad bacteria in evryone's gut and we've always been left to feel that in some way we've been ripped off getting them done. Have had one paed. just throwing a test on the table and saying 'what is this company? anything like that would only be picked up in bloods anyway', that was relating to a IGA salivia. To prove their point they've run nhs stool tests and guess what they've come back completely clear - this all backs up what they say and makes you feel there's absolutely no point in showing them to them. Have you a good nutritionalist that you could work with who's used to seeing these results and wont just treat them as worthless? Janet To: Autism-Biomedical-Europe From: sidrahmasood@...Date: Fri, 9 Mar 2012 20:46:46 +0000Subject: H Pylori Hi I had my son tested privately from a lab in America and the stool test showed he has H Pylori: Helicobacter pylori 5.7E+005 H I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Is there any thing I can do to get him treated/tested? Many Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 You're not alone, this is precisely what we've had time and again. We've been told that as they're not nhs tests so they can't go by them, that there is good and bad bacteria in evryone's gut and we've always been left to feel that in some way we've been ripped off getting them done. Have had one paed. just throwing a test on the table and saying 'what is this company? anything like that would only be picked up in bloods anyway', that was relating to a IGA salivia. To prove their point they've run nhs stool tests and guess what they've come back completely clear - this all backs up what they say and makes you feel there's absolutely no point in showing them to them. Have you a good nutritionalist that you could work with who's used to seeing these results and wont just treat them as worthless? Janet To: Autism-Biomedical-Europe From: sidrahmasood@...Date: Fri, 9 Mar 2012 20:46:46 +0000Subject: H Pylori Hi I had my son tested privately from a lab in America and the stool test showed he has H Pylori: Helicobacter pylori 5.7E+005 H I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Is there any thing I can do to get him treated/tested? Many Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 You're not alone, this is precisely what we've had time and again. We've been told that as they're not nhs tests so they can't go by them, that there is good and bad bacteria in evryone's gut and we've always been left to feel that in some way we've been ripped off getting them done. Have had one paed. just throwing a test on the table and saying 'what is this company? anything like that would only be picked up in bloods anyway', that was relating to a IGA salivia. To prove their point they've run nhs stool tests and guess what they've come back completely clear - this all backs up what they say and makes you feel there's absolutely no point in showing them to them. Have you a good nutritionalist that you could work with who's used to seeing these results and wont just treat them as worthless? Janet To: Autism-Biomedical-Europe From: sidrahmasood@...Date: Fri, 9 Mar 2012 20:46:46 +0000Subject: H Pylori Hi I had my son tested privately from a lab in America and the stool test showed he has H Pylori: Helicobacter pylori 5.7E+005 H I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. Is there any thing I can do to get him treated/tested? Many Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 What course of action did Dr Thomson recommend?We have seen him at Sheffield Childrens hospital and I'm wondering to ask for re-referral.Alison R  INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 What course of action did Dr Thomson recommend?We have seen him at Sheffield Childrens hospital and I'm wondering to ask for re-referral.Alison R  INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 What course of action did Dr Thomson recommend?We have seen him at Sheffield Childrens hospital and I'm wondering to ask for re-referral.Alison R  INSIST on a referral to a gastroenterologist! If you have to exaggerate some symptoms to get there than you will have to! Our kids suffer so much and a lot of the time they don't show it in a normal way so as always it is mistaken for autistic behaviour (stimming, head banging, biting etc etc) No one can get near my son to examine him anyway at the GP so I always ask for a referral to a specialist anyway! If you have private healthcare it helps of course! As long as you got it before your child was diagnosed of course! A stool test for h pylori is how you test for h pylori so they cannot say this is not relevant! Make a big fuss and say you are going to complain formally! I use Dr Thomson at the Portland and he accepted my stool test that Lucinda Millar did for us and he is a very well recognised gastro! http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 & SubCategoryID=162 Also I would change doctors anyway! You clearing have a crap doctor who is very extremely unhelpful!! > > Hi > > I had my son tested privately from a lab in America and the stool test showed he has H Pylori: >  > > Helicobacter pylori 5.7E+005 H > I took the results to both my GP and also to my sons NHS paediatrician and they both said, firstly stool tests are not accurate and secondly they wont treat him or even retest for the infection. > > Is there any thing I can do to get him treated/tested? > > Many Thanks > >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 2 week course of antibiotics (amoxicillin and metronidazole) and omeprazole. We have just finished week 1 so far. Sophie > > > > > > Hi > > > > > > I had my son tested privately from a lab in America and the stool test > > showed he has H Pylori: > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > I took the results to both my GP and also to my sons NHS paediatrician > > and they both said, firstly stool tests are not accurate and secondly they > > wont treat him or even retest for the infection. > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 Hi Sophie, I've just been reading about this. Isn't the protocol usually amoxicillin OR metronidazole? " Omeprazole is combined with the antibiotics clarithromycin and amoxicillin (or metronidazole in penicillin-hypersensitive patients) in the 7–14 day eradication triple therapy for Helicobacter pylori. " http://en.wikipedia.org/wiki/Omeprazole When I recently read the NICE guidelines I thought they recommended amoxicillin and metronidazole together but I misread and it actually recommends one or the other taken with clarithromycin. This is what NICE says http://www.mims.co.uk/news/882106/Combination-regimens-eradication-Hpylori-NICE-\ guidance/ " The optimum regimen consists of a full dose proton pump inhibitor, with either amoxicillin 1g and clarithromycin 500mg or metronidazole 400mg and clarithromycin 250mg, all given twice daily. " When I read it I saw " amoxicillin and clarithromycin or metronidazole " . But it is " either amoxicillin and clarithromycin or metronidazole and clarithromycin " Best wishes, Sandy > > > > > > > > Hi > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > showed he has H Pylori: > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > and they both said, firstly stool tests are not accurate and secondly they > > > wont treat him or even retest for the infection. > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 Hi Sophie, I've just been reading about this. Isn't the protocol usually amoxicillin OR metronidazole? " Omeprazole is combined with the antibiotics clarithromycin and amoxicillin (or metronidazole in penicillin-hypersensitive patients) in the 7–14 day eradication triple therapy for Helicobacter pylori. " http://en.wikipedia.org/wiki/Omeprazole When I recently read the NICE guidelines I thought they recommended amoxicillin and metronidazole together but I misread and it actually recommends one or the other taken with clarithromycin. This is what NICE says http://www.mims.co.uk/news/882106/Combination-regimens-eradication-Hpylori-NICE-\ guidance/ " The optimum regimen consists of a full dose proton pump inhibitor, with either amoxicillin 1g and clarithromycin 500mg or metronidazole 400mg and clarithromycin 250mg, all given twice daily. " When I read it I saw " amoxicillin and clarithromycin or metronidazole " . But it is " either amoxicillin and clarithromycin or metronidazole and clarithromycin " Best wishes, Sandy > > > > > > > > Hi > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > showed he has H Pylori: > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > and they both said, firstly stool tests are not accurate and secondly they > > > wont treat him or even retest for the infection. > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 Hi Sophie, I've just been reading about this. Isn't the protocol usually amoxicillin OR metronidazole? " Omeprazole is combined with the antibiotics clarithromycin and amoxicillin (or metronidazole in penicillin-hypersensitive patients) in the 7–14 day eradication triple therapy for Helicobacter pylori. " http://en.wikipedia.org/wiki/Omeprazole When I recently read the NICE guidelines I thought they recommended amoxicillin and metronidazole together but I misread and it actually recommends one or the other taken with clarithromycin. This is what NICE says http://www.mims.co.uk/news/882106/Combination-regimens-eradication-Hpylori-NICE-\ guidance/ " The optimum regimen consists of a full dose proton pump inhibitor, with either amoxicillin 1g and clarithromycin 500mg or metronidazole 400mg and clarithromycin 250mg, all given twice daily. " When I read it I saw " amoxicillin and clarithromycin or metronidazole " . But it is " either amoxicillin and clarithromycin or metronidazole and clarithromycin " Best wishes, Sandy > > > > > > > > Hi > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > showed he has H Pylori: > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > and they both said, firstly stool tests are not accurate and secondly they > > > wont treat him or even retest for the infection. > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hi Kirsty, Could you please tell me how long did it take and how much was your son on. Thanks > Mastic Gum worked for my son > K > X Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hi Kirsty, Could you please tell me how long did it take and how much was your son on. Thanks > Mastic Gum worked for my son > K > X Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hi Kirsty, Could you please tell me how long did it take and how much was your son on. Thanks > Mastic Gum worked for my son > K > X Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 It came up positive in a test. As you know we have just done another stool test. Possibly the only thug on the test that he doesn't have! For us the symptoms was bad reflux. That has gone now. When we get the odd day of reflux I go back to giving it three times a day for week and reflux disappears again . I would imagine I probably have it too so maybe I need to do it now! K X > > > > > > > > > > > > > > > > > > Hi > > > > > > > > > > > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > > > > > > showed he has H Pylori: > > > > > > > > > > > > > > > > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > > > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > > > > > > and they both said, firstly stool tests are not accurate and secondly they > > > > > > > > wont treat him or even retest for the infection. > > > > > > > > > > > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > > > > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 It came up positive in a test. As you know we have just done another stool test. Possibly the only thug on the test that he doesn't have! For us the symptoms was bad reflux. That has gone now. When we get the odd day of reflux I go back to giving it three times a day for week and reflux disappears again . I would imagine I probably have it too so maybe I need to do it now! K X > > > > > > > > > > > > > > > > > > Hi > > > > > > > > > > > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > > > > > > showed he has H Pylori: > > > > > > > > > > > > > > > > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > > > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > > > > > > and they both said, firstly stool tests are not accurate and secondly they > > > > > > > > wont treat him or even retest for the infection. > > > > > > > > > > > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > > > > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 It came up positive in a test. As you know we have just done another stool test. Possibly the only thug on the test that he doesn't have! For us the symptoms was bad reflux. That has gone now. When we get the odd day of reflux I go back to giving it three times a day for week and reflux disappears again . I would imagine I probably have it too so maybe I need to do it now! K X > > > > > > > > > > > > > > > > > > Hi > > > > > > > > > > > > > > > > > > I had my son tested privately from a lab in America and the stool test > > > > > > > > showed he has H Pylori: > > > > > > > > > > > > > > > > > > > > > > > > > > > Helicobacter pylori 5.7E+005 H > > > > > > > > > I took the results to both my GP and also to my sons NHS paediatrician > > > > > > > > and they both said, firstly stool tests are not accurate and secondly they > > > > > > > > wont treat him or even retest for the infection. > > > > > > > > > > > > > > > > > > Is there any thing I can do to get him treated/tested? > > > > > > > > > > > > > > > > > > Many Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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