Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Thanks a lot for that, do keep us posted! btw POTS/OI is one of the most frequent consequences of dysautonomia (although can be caused by other things). I do suspect it in ds - transient or mild form - but don't think they would be picked up by the Basic test even if more severe. Natasa x > > Hi Nat and , > > Ds had bloods today for aminos, lactate, lithium, selenium, glucose(I > asked for this myself today as diabetis common autonomic illness) another > 2 I forgot name of sorry...organic acids or ?aminos (urine). The nurse > said that some of the tests were very rare ones they don't do so I think > Neuro has been exceptionally good to do them. > > BS had the basic test done took 15=20 minutes. It is promising that the BS > tests are picking up things that then the NHS can follow up later when we > have proof of results. > > The Neuro shows interest in the findings which is good start and sorry > nowhere near London sorry as from Wales. > > Whatever the outcome I am happy the NHS are doing what they can to help > ds...by sounds of it ds is very lucky to get this help! > > I will come back with results and if needed what NHS will do to help ds. > Hopefully ds will be well and not need intervention but glad Neuro > investigating it further. > > Dr G said ds result was quite 'marked' and NHS one showed 'some > disturbance' which is a big difference in what is stated from one to the > other but at least both tests agreed something showed up! > > Thanks for sharing this ds hasn't got symptoms of POTS thankfully, if > anything it would be dysautonomia. > > Nat HTH > >> > > >> > > Hi there, >> > > >> > > I am also very interested in this ¡© I think that test is new to Br >> Hospital, >> > > so unlikely that very many kids would have had it done so far and >> been >> > > treated it Automic disturbances. I could be wrong.. >> > > >> > > When you say that result with Ketitofen was quite marked do you mean >> effect >> > > on behaviour and symptoms? Or something else? >> > > >> > > VERY interested to hear how you got Neuro referral!! Was it through >> a GP? >> > > Did GP agree to refer you on the basis of Autonomic test results? >> > > >> > > Natasa >> > > >> > > >> > > >> > > >> > > >> > > From: ru345mins <ru345mins@> >> > > Reply-To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Date: Tue, 06 Dec 2011 13:28:00 -0000 >> > > To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Subject: Neuro AutonomicDisturbances >> > > >> > > >> > > >> > > >> > > >> > > >> > > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen >> and will >> > > reassess this month (3 months since starting Ketotifen). The result >> was >> > > quite marked and by the effects of the medication it is likely to be >> viral >> > > related. So will return for another autonomic test this month to see >> if >> > > Ketotifin has sabalized the disturbance if not try viral route. >> > > I took Dr G letter to Neurologist who also did ECG which result >> shows Neuro >> > > Autonomic Disturbances and wants ds to have bloods and urine tests >> this >> > > week. >> > > >> > > Does anyone here have a child with Neuro Autonomic Disturbances and >> what >> > > diagnosis, symptoms and most important treatment and prognosis their >> is? >> > > >> > > Thank you in advance. >> > > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Thanks a lot for that, do keep us posted! btw POTS/OI is one of the most frequent consequences of dysautonomia (although can be caused by other things). I do suspect it in ds - transient or mild form - but don't think they would be picked up by the Basic test even if more severe. Natasa x > > Hi Nat and , > > Ds had bloods today for aminos, lactate, lithium, selenium, glucose(I > asked for this myself today as diabetis common autonomic illness) another > 2 I forgot name of sorry...organic acids or ?aminos (urine). The nurse > said that some of the tests were very rare ones they don't do so I think > Neuro has been exceptionally good to do them. > > BS had the basic test done took 15=20 minutes. It is promising that the BS > tests are picking up things that then the NHS can follow up later when we > have proof of results. > > The Neuro shows interest in the findings which is good start and sorry > nowhere near London sorry as from Wales. > > Whatever the outcome I am happy the NHS are doing what they can to help > ds...by sounds of it ds is very lucky to get this help! > > I will come back with results and if needed what NHS will do to help ds. > Hopefully ds will be well and not need intervention but glad Neuro > investigating it further. > > Dr G said ds result was quite 'marked' and NHS one showed 'some > disturbance' which is a big difference in what is stated from one to the > other but at least both tests agreed something showed up! > > Thanks for sharing this ds hasn't got symptoms of POTS thankfully, if > anything it would be dysautonomia. > > Nat HTH > >> > > >> > > Hi there, >> > > >> > > I am also very interested in this ¡© I think that test is new to Br >> Hospital, >> > > so unlikely that very many kids would have had it done so far and >> been >> > > treated it Automic disturbances. I could be wrong.. >> > > >> > > When you say that result with Ketitofen was quite marked do you mean >> effect >> > > on behaviour and symptoms? Or something else? >> > > >> > > VERY interested to hear how you got Neuro referral!! Was it through >> a GP? >> > > Did GP agree to refer you on the basis of Autonomic test results? >> > > >> > > Natasa >> > > >> > > >> > > >> > > >> > > >> > > From: ru345mins <ru345mins@> >> > > Reply-To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Date: Tue, 06 Dec 2011 13:28:00 -0000 >> > > To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Subject: Neuro AutonomicDisturbances >> > > >> > > >> > > >> > > >> > > >> > > >> > > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen >> and will >> > > reassess this month (3 months since starting Ketotifen). The result >> was >> > > quite marked and by the effects of the medication it is likely to be >> viral >> > > related. So will return for another autonomic test this month to see >> if >> > > Ketotifin has sabalized the disturbance if not try viral route. >> > > I took Dr G letter to Neurologist who also did ECG which result >> shows Neuro >> > > Autonomic Disturbances and wants ds to have bloods and urine tests >> this >> > > week. >> > > >> > > Does anyone here have a child with Neuro Autonomic Disturbances and >> what >> > > diagnosis, symptoms and most important treatment and prognosis their >> is? >> > > >> > > Thank you in advance. >> > > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Thanks a lot for that, do keep us posted! btw POTS/OI is one of the most frequent consequences of dysautonomia (although can be caused by other things). I do suspect it in ds - transient or mild form - but don't think they would be picked up by the Basic test even if more severe. Natasa x > > Hi Nat and , > > Ds had bloods today for aminos, lactate, lithium, selenium, glucose(I > asked for this myself today as diabetis common autonomic illness) another > 2 I forgot name of sorry...organic acids or ?aminos (urine). The nurse > said that some of the tests were very rare ones they don't do so I think > Neuro has been exceptionally good to do them. > > BS had the basic test done took 15=20 minutes. It is promising that the BS > tests are picking up things that then the NHS can follow up later when we > have proof of results. > > The Neuro shows interest in the findings which is good start and sorry > nowhere near London sorry as from Wales. > > Whatever the outcome I am happy the NHS are doing what they can to help > ds...by sounds of it ds is very lucky to get this help! > > I will come back with results and if needed what NHS will do to help ds. > Hopefully ds will be well and not need intervention but glad Neuro > investigating it further. > > Dr G said ds result was quite 'marked' and NHS one showed 'some > disturbance' which is a big difference in what is stated from one to the > other but at least both tests agreed something showed up! > > Thanks for sharing this ds hasn't got symptoms of POTS thankfully, if > anything it would be dysautonomia. > > Nat HTH > >> > > >> > > Hi there, >> > > >> > > I am also very interested in this ¡© I think that test is new to Br >> Hospital, >> > > so unlikely that very many kids would have had it done so far and >> been >> > > treated it Automic disturbances. I could be wrong.. >> > > >> > > When you say that result with Ketitofen was quite marked do you mean >> effect >> > > on behaviour and symptoms? Or something else? >> > > >> > > VERY interested to hear how you got Neuro referral!! Was it through >> a GP? >> > > Did GP agree to refer you on the basis of Autonomic test results? >> > > >> > > Natasa >> > > >> > > >> > > >> > > >> > > >> > > From: ru345mins <ru345mins@> >> > > Reply-To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Date: Tue, 06 Dec 2011 13:28:00 -0000 >> > > To: " Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> " >> > > <Autism-Biomedical-Europe >> <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > >> > > Subject: Neuro AutonomicDisturbances >> > > >> > > >> > > >> > > >> > > >> > > >> > > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen >> and will >> > > reassess this month (3 months since starting Ketotifen). The result >> was >> > > quite marked and by the effects of the medication it is likely to be >> viral >> > > related. So will return for another autonomic test this month to see >> if >> > > Ketotifin has sabalized the disturbance if not try viral route. >> > > I took Dr G letter to Neurologist who also did ECG which result >> shows Neuro >> > > Autonomic Disturbances and wants ds to have bloods and urine tests >> this >> > > week. >> > > >> > > Does anyone here have a child with Neuro Autonomic Disturbances and >> what >> > > diagnosis, symptoms and most important treatment and prognosis their >> is? >> > > >> > > Thank you in advance. >> > > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Could someone tell me what POTS stands for? Thanks. Sue Subject: Re: Neuro AutonomicDisturbancesTo: Autism-Biomedical-Europe Date: Wednesday, 7 December, 2011, 18:16 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndromeFrom: susan werenowski Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 7 Dec 2011 22:12:37 +0000 (GMT)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Could someone tell me what POTS stands for? Thanks. SueSubject: Re: Neuro AutonomicDisturbancesTo: Autism-Biomedical-Europe Date: Wednesday, 7 December, 2011, 18:16 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndromeFrom: susan werenowski Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 7 Dec 2011 22:12:37 +0000 (GMT)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Could someone tell me what POTS stands for? Thanks. SueSubject: Re: Neuro AutonomicDisturbancesTo: Autism-Biomedical-Europe Date: Wednesday, 7 December, 2011, 18:16 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndromeFrom: susan werenowski Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 7 Dec 2011 22:12:37 +0000 (GMT)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Could someone tell me what POTS stands for? Thanks. SueSubject: Re: Neuro AutonomicDisturbancesTo: Autism-Biomedical-Europe Date: Wednesday, 7 December, 2011, 18:16 i haven't been diagnosed with POTS but my autistic friend suspects he has.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Could someone tell me what POTS stands for? Thanks. SuePostural orthostatic tachycardia syndrome. -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Could someone tell me what POTS stands for? Thanks. SuePostural orthostatic tachycardia syndrome. -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Could someone tell me what POTS stands for? Thanks. SuePostural orthostatic tachycardia syndrome. -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 POTS would not have to be so bad as to cause falling etc and still be POTS… Did you get all clear on BP on autonomic and ECG tests??NatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Dec 2011 23:42:25 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 POTS would not have to be so bad as to cause falling etc and still be POTS… Did you get all clear on BP on autonomic and ECG tests??NatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Dec 2011 23:42:25 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 POTS would not have to be so bad as to cause falling etc and still be POTS… Did you get all clear on BP on autonomic and ECG tests??NatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Dec 2011 23:42:25 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances Hi Sue, POTS is Postural Orthostatic Tachicardia Syndrome which effects the persons blood pressure on standing upright. is never said you had POTS? I know you said a friend did though as you did say this initally if that clears any miscommunication. Ds doesn't fall/lose balance etc standing up so know BP isn't effected. > > > > Subject: Re: Neuro AutonomicDisturbances > To: Autism-Biomedical-Europe > Date: Wednesday, 7 December, 2011, 18:16 > > > > Â > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > -- > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Many thanks Could someone tell me what POTS stands for? Thanks. Sue Postural orthostatic tachycardia syndrome.-- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 No I didn't ask about BP. I just assumed because ds doesn't fall over ...ever and is very careful and knows where his limbs are etc he doesn't have the symptoms I read re POTS but he does have propreception issues so unless this counts? Has good balance tbh Nat. I will ask Dr G to do BP test again or if showed issue last time (he never said there was issue with BP)....but Neuro did BP and said it was fine...it was more a vascular issue Dr g was concerned about something to do with refill time also! I think Dr G would have gone down propanolol route if their was maybe? I am still in shock that Neuro said there was disturbances tbh, wasn't expecting anything! So really new to me. What if autism is found for some to be an endocrine disorder? But some of you here have said that for years anyhow!! > > > > > > From: is Green <alexis.atrekkie22@> > > Subject: Re: Neuro AutonomicDisturbances > > To: Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com> > > Date: Wednesday, 7 December, 2011, 18:16 > > > > > > > > Â > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has. > > > > -- > > is > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Have you got a friend who is a nurse or summat that could check BP over time? If I had just one reading of Sam's I would have though he was OK. Sam only falls if he is having a seizure and then not very often. I don;t think he has proprioception issues now though he used to. Though Mel said he moves further around you than he needs to and she said she has seen h tilt his head as he goes by but we were discussing Ian Jordan and eye issues at the time after TA conf described him as having severe neurological stress which is what says too...... Mx No I didn't ask about BP. I just assumed because ds doesn't fall over ...ever and is very careful and knows where his limbs are etc he doesn't have the symptoms I read re POTS but he does have propreception issues so unless this counts? Has good balance tbh Nat.I will ask Dr G to do BP test again or if showed issue last time (he never said there was issue with BP)....but Neuro did BP and said it was fine...it was more a vascular issue Dr g was concerned about something to do with refill time also! I think Dr G would have gone down propanolol route if their was maybe?I am still in shock that Neuro said there was disturbances tbh, wasn't expecting anything! So really new to me.What if autism is found for some to be an endocrine disorder? But some of you here have said that for years anyhow!!> > > > > > From: is Green <alexis.atrekkie22@>> > Subject: Re: Neuro AutonomicDisturbances> > To: Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>> > Date: Wednesday, 7 December, 2011, 18:16> > > > > > > > Â > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has.> > > > -- > > is> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Have you got a friend who is a nurse or summat that could check BP over time? If I had just one reading of Sam's I would have though he was OK. Sam only falls if he is having a seizure and then not very often. I don;t think he has proprioception issues now though he used to. Though Mel said he moves further around you than he needs to and she said she has seen h tilt his head as he goes by but we were discussing Ian Jordan and eye issues at the time after TA conf described him as having severe neurological stress which is what says too...... Mx No I didn't ask about BP. I just assumed because ds doesn't fall over ...ever and is very careful and knows where his limbs are etc he doesn't have the symptoms I read re POTS but he does have propreception issues so unless this counts? Has good balance tbh Nat.I will ask Dr G to do BP test again or if showed issue last time (he never said there was issue with BP)....but Neuro did BP and said it was fine...it was more a vascular issue Dr g was concerned about something to do with refill time also! I think Dr G would have gone down propanolol route if their was maybe?I am still in shock that Neuro said there was disturbances tbh, wasn't expecting anything! So really new to me.What if autism is found for some to be an endocrine disorder? But some of you here have said that for years anyhow!!> > > > > > From: is Green <alexis.atrekkie22@>> > Subject: Re: Neuro AutonomicDisturbances> > To: Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>> > Date: Wednesday, 7 December, 2011, 18:16> > > > > > > > Â > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has.> > > > -- > > is> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Have you got a friend who is a nurse or summat that could check BP over time? If I had just one reading of Sam's I would have though he was OK. Sam only falls if he is having a seizure and then not very often. I don;t think he has proprioception issues now though he used to. Though Mel said he moves further around you than he needs to and she said she has seen h tilt his head as he goes by but we were discussing Ian Jordan and eye issues at the time after TA conf described him as having severe neurological stress which is what says too...... Mx No I didn't ask about BP. I just assumed because ds doesn't fall over ...ever and is very careful and knows where his limbs are etc he doesn't have the symptoms I read re POTS but he does have propreception issues so unless this counts? Has good balance tbh Nat.I will ask Dr G to do BP test again or if showed issue last time (he never said there was issue with BP)....but Neuro did BP and said it was fine...it was more a vascular issue Dr g was concerned about something to do with refill time also! I think Dr G would have gone down propanolol route if their was maybe?I am still in shock that Neuro said there was disturbances tbh, wasn't expecting anything! So really new to me.What if autism is found for some to be an endocrine disorder? But some of you here have said that for years anyhow!!> > > > > > From: is Green <alexis.atrekkie22@>> > Subject: Re: Neuro AutonomicDisturbances> > To: Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>> > Date: Wednesday, 7 December, 2011, 18:16> > > > > > > > Â > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he has.> > > > -- > > is> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Many thanks :)Thats ok and good luck with finding help. My friend keeps passing out when he's out in his wheelchair (hes hypermobile as well) and hopes to find some help at Stanmore rehab unit. -- is Quote Link to comment Share on other sites More sharing options...
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