Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Thank you everyone for your posts.I was ill yesterday (wonder why?) and took to my bed so H had to be looked after by someone else and had no laxatives. Current tally is 9 soilings a day (minor) plus a couple of tiny poos in the toilet. He has a first appointment at paediatric outpatients on 4th June, about 10 days away and I really hope they don't just say keep on with more and more laxatives. I hope they do an ultrasound or an X-ray.I am worried about Movicol. Henry's OAT recent test indicated clostridial overgrowth, and to a lesser degree, candida. He is definitely much worse since the attempts at clearout starting 3 weeks ago, and the Flagyl for parasites he has also had. I have read movicol + clostridia can be very bad as it allows the PEG to be absorbed to some degree, but I assume the NHS won't know this, and also won't accept the OAT as evidence of clostridial overgrowth. I finally received Henry's results dating back to late 2005 from Reading University showing the various bacterial levels in his gut then (FISH analysis). Clostridia appear prominent, but I've got nothing to measure his results against. (Does anyone have any idea?) The Community nurses who manage paediatric constipation locally say they would like to use ultrasound routinely to determine whether a child has impaction but the PCT won't pay for a machine. Have to admit I feel like giving up at times, because he seems worse rather than better and wouldn't eat his lunch - even the strawberries and reaspberries - offered today or drink much . If he won't eat supper it's off to A & E maybe. Waste of time going to the out of hours service and there's no normal service until Tuesday. I think the movicol contributes to the red lips, perhaps.All I seem to be doing is making things worse. (Did you see the news item last night about the woman who consulted 8 doctors and NHS Direct over a weekend in 2005 - a couple of days later she died of blood poioning in hospital, because all of them had played the " wait and see and let someone else deal with it " game.) I would like the hospital to consider the possibility of an enema but I am afraid to ask for such an invasive procedure. I shall try a suppository this evening: they do help, but not much. Wish I could take Caroline with me to the appointment! Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 If you post the Reading results I will ask my brother how normal they are Margaret. He runs labs for the NHS so he will know what they tell NHS doctors Sally mcollins2001uk wrote: > > Thank you everyone for your posts.I was ill yesterday (wonder why?) > and took to my bed so H had to be looked after by someone else and > had no laxatives. Current tally is 9 soilings a day (minor) plus a > couple of tiny poos in the toilet. He has a first appointment at > paediatric outpatients on 4th June, about 10 days away and I really > hope they don't just say keep on with more and more laxatives. I hope > they do an ultrasound or an X-ray.I am worried about Movicol. Henry's > OAT recent test indicated clostridial overgrowth, and to a lesser > degree, candida. He is definitely much worse since the attempts at > clearout starting 3 weeks ago, and the Flagyl for parasites he has > also had. I have read movicol + clostridia can be very bad as it > allows the PEG to be absorbed to some degree, but I assume the NHS > won't know this, and also won't accept the OAT as evidence of > clostridial overgrowth. > > I finally received Henry's results dating back to late 2005 from > Reading University showing the various bacterial levels in his gut > then (FISH analysis). Clostridia appear prominent, but I've got > nothing to measure his results against. (Does anyone have any idea?) > The Community nurses who manage paediatric constipation locally say > they would like to use ultrasound routinely to determine whether a > child has impaction but the PCT won't pay for a machine. > > Have to admit I feel like giving up at times, because he seems worse > rather than better and wouldn't eat his lunch - even the strawberries > and reaspberries - offered today or drink much . If he won't eat > supper it's off to A & E maybe. Waste of time going to the out of hours > service and there's no normal service until Tuesday. I think the > movicol contributes to the red lips, perhaps.All I seem to be doing > is making things worse. > > (Did you see the news item last night about the woman who consulted 8 > doctors and NHS Direct over a weekend in 2005 - a couple of days > later she died of blood poioning in hospital, because all of them had > played the " wait and see and let someone else deal with it " game.) > > I would like the hospital to consider the possibility of an enema but > I am afraid to ask for such an invasive procedure. I shall try a > suppository this evening: they do help, but not much. > > Wish I could take Caroline with me to the appointment! > > Margaret > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.0/818 - Release Date: 25/05/2007 12:32 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Thanks, Sally, I have sent them off-list. Margaret > > > > Thank you everyone for your posts.I was ill yesterday (wonder why?) > > and took to my bed so H had to be looked after by someone else and > > had no laxatives. Current tally is 9 soilings a day (minor) plus a > > couple of tiny poos in the toilet. He has a first appointment at > > paediatric outpatients on 4th June, about 10 days away and I really > > hope they don't just say keep on with more and more laxatives. I hope > > they do an ultrasound or an X-ray.I am worried about Movicol. Henry's > > OAT recent test indicated clostridial overgrowth, and to a lesser > > degree, candida. He is definitely much worse since the attempts at > > clearout starting 3 weeks ago, and the Flagyl for parasites he has > > also had. I have read movicol + clostridia can be very bad as it > > allows the PEG to be absorbed to some degree, but I assume the NHS > > won't know this, and also won't accept the OAT as evidence of > > clostridial overgrowth. > > > > I finally received Henry's results dating back to late 2005 from > > Reading University showing the various bacterial levels in his gut > > then (FISH analysis). Clostridia appear prominent, but I've got > > nothing to measure his results against. (Does anyone have any idea?) > > The Community nurses who manage paediatric constipation locally say > > they would like to use ultrasound routinely to determine whether a > > child has impaction but the PCT won't pay for a machine. > > > > Have to admit I feel like giving up at times, because he seems worse > > rather than better and wouldn't eat his lunch - even the strawberries > > and reaspberries - offered today or drink much . If he won't eat > > supper it's off to A & E maybe. Waste of time going to the out of hours > > service and there's no normal service until Tuesday. I think the > > movicol contributes to the red lips, perhaps.All I seem to be doing > > is making things worse. > > > > (Did you see the news item last night about the woman who consulted 8 > > doctors and NHS Direct over a weekend in 2005 - a couple of days > > later she died of blood poioning in hospital, because all of them had > > played the " wait and see and let someone else deal with it " game.) > > > > I would like the hospital to consider the possibility of an enema but > > I am afraid to ask for such an invasive procedure. I shall try a > > suppository this evening: they do help, but not much. > > > > Wish I could take Caroline with me to the appointment! > > > > Margaret > > > > > > ------------------------------------------------------------------ ------ > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.472 / Virus Database: 269.8.0/818 - Release Date: 25/05/2007 12:32 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Margaret, e mail me off line with your new e mail address , I cant get the n.t.l one to work. Where do you live ? Lara xx > > Thank you everyone for your posts.I was ill yesterday (wonder why?) > and took to my bed so H had to be looked after by someone else and > had no laxatives. Current tally is 9 soilings a day (minor) plus a > couple of tiny poos in the toilet. He has a first appointment at > paediatric outpatients on 4th June, about 10 days away and I really > hope they don't just say keep on with more and more laxatives. I hope > they do an ultrasound or an X-ray.I am worried about Movicol. Henry's > OAT recent test indicated clostridial overgrowth, and to a lesser > degree, candida. He is definitely much worse since the attempts at > clearout starting 3 weeks ago, and the Flagyl for parasites he has > also had. I have read movicol + clostridia can be very bad as it > allows the PEG to be absorbed to some degree, but I assume the NHS > won't know this, and also won't accept the OAT as evidence of > clostridial overgrowth. > > I finally received Henry's results dating back to late 2005 from > Reading University showing the various bacterial levels in his gut > then (FISH analysis). Clostridia appear prominent, but I've got > nothing to measure his results against. (Does anyone have any idea?) > The Community nurses who manage paediatric constipation locally say > they would like to use ultrasound routinely to determine whether a > child has impaction but the PCT won't pay for a machine. > > Have to admit I feel like giving up at times, because he seems worse > rather than better and wouldn't eat his lunch - even the strawberries > and reaspberries - offered today or drink much . If he won't eat > supper it's off to A & E maybe. Waste of time going to the out of hours > service and there's no normal service until Tuesday. I think the > movicol contributes to the red lips, perhaps.All I seem to be doing > is making things worse. > > (Did you see the news item last night about the woman who consulted 8 > doctors and NHS Direct over a weekend in 2005 - a couple of days > later she died of blood poioning in hospital, because all of them had > played the " wait and see and let someone else deal with it " game.) > > I would like the hospital to consider the possibility of an enema but > I am afraid to ask for such an invasive procedure. I shall try a > suppository this evening: they do help, but not much. > > Wish I could take Caroline with me to the appointment! > > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 So pleased Henry is feeling better Margaret, what an ordeal. Vicky x Quote Link to comment Share on other sites More sharing options...
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