Re: Neuro AutonomicDisturbances

[Guest guest]

Clear that he is making improvements, who cares how but low stamina is a shame

Hang in there!

Mx

Sorry that is not clear is it!

[Guest guest]

Makes me feel exactly the same..............

Mx

40mg and I gave him lots of difficult maths to do which he was slower once medicated and hardly spoke...where I thought it would make him calm enough to speak.I also tried 20mg and again I felt the medication would have more deficits than benifits esp slowing down cognitive function for school.I think giving it on a need be basis for events that a child finds extremely stressful now and again yes, but as I had asthma as a child I decided also the risks not worth it incase ds has it too underlying.> >> > 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.> >>

[Guest guest]

Makes me feel exactly the same..............

Mx

40mg and I gave him lots of difficult maths to do which he was slower once medicated and hardly spoke...where I thought it would make him calm enough to speak.I also tried 20mg and again I felt the medication would have more deficits than benifits esp slowing down cognitive function for school.I think giving it on a need be basis for events that a child finds extremely stressful now and again yes, but as I had asthma as a child I decided also the risks not worth it incase ds has it too underlying.> >> > 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.> >>

[Guest guest]

Makes me feel exactly the same..............

Mx

40mg and I gave him lots of difficult maths to do which he was slower once medicated and hardly spoke...where I thought it would make him calm enough to speak.I also tried 20mg and again I felt the medication would have more deficits than benifits esp slowing down cognitive function for school.I think giving it on a need be basis for events that a child finds extremely stressful now and again yes, but as I had asthma as a child I decided also the risks not worth it incase ds has it too underlying.> >> > 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.> >>

[Guest guest]

As you mention CFS (my ds used be a lot like that, now only slightly) first thing that pops to mind is that he could be suffering POTS or similar. Propranolol in higher doses can make POTS worse, but is used as a treatment in low doses. This cut off point is around 20mg, for adults. Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 20:07:40 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Hi Mandi,

The results I have seen is down to HBOT - more language and more switched on socially. Also his gross motor skills have improved slightly.

He has started to eat veggies for the first time (ok hidden in soup but even soup and meat has steak most nights now to help increase iron) so diet is becoming more open!

The LDN stopped him giggling constantly and became calm.

However 'physical stamina' and 'get up and go' he remains exhausted! Like CFS basically! He can do 15 mins in park then exhausted and needs to literally lye on his back!

His lactate levels also returned to normal (forgot to mention). They were slightly abnormal 6 months earlier. He had markers for slight mito dysfunction.

I can't say it has effected his 'cognitive' or 'behaviour' as these were okish because of ABA anyway.

I guess the restricted diet and gut issues due to the MMR has taken it's toll? I don't know!

Vit D was extremely low which was worrying.

He seems more grown up too in emotionally and slightly more social (but this last factor could be school also).

Sorry that is not clear is it!

> >

> > 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.

> >

>

[Guest guest]

As you mention CFS (my ds used be a lot like that, now only slightly) first thing that pops to mind is that he could be suffering POTS or similar. Propranolol in higher doses can make POTS worse, but is used as a treatment in low doses. This cut off point is around 20mg, for adults. Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 20:07:40 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Hi Mandi,

The results I have seen is down to HBOT - more language and more switched on socially. Also his gross motor skills have improved slightly.

He has started to eat veggies for the first time (ok hidden in soup but even soup and meat has steak most nights now to help increase iron) so diet is becoming more open!

The LDN stopped him giggling constantly and became calm.

However 'physical stamina' and 'get up and go' he remains exhausted! Like CFS basically! He can do 15 mins in park then exhausted and needs to literally lye on his back!

His lactate levels also returned to normal (forgot to mention). They were slightly abnormal 6 months earlier. He had markers for slight mito dysfunction.

I can't say it has effected his 'cognitive' or 'behaviour' as these were okish because of ABA anyway.

I guess the restricted diet and gut issues due to the MMR has taken it's toll? I don't know!

Vit D was extremely low which was worrying.

He seems more grown up too in emotionally and slightly more social (but this last factor could be school also).

Sorry that is not clear is it!

> >

> > 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.

> >

>

[Guest guest]

As you mention CFS (my ds used be a lot like that, now only slightly) first thing that pops to mind is that he could be suffering POTS or similar. Propranolol in higher doses can make POTS worse, but is used as a treatment in low doses. This cut off point is around 20mg, for adults. Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 20:07:40 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Hi Mandi,

The results I have seen is down to HBOT - more language and more switched on socially. Also his gross motor skills have improved slightly.

He has started to eat veggies for the first time (ok hidden in soup but even soup and meat has steak most nights now to help increase iron) so diet is becoming more open!

The LDN stopped him giggling constantly and became calm.

However 'physical stamina' and 'get up and go' he remains exhausted! Like CFS basically! He can do 15 mins in park then exhausted and needs to literally lye on his back!

His lactate levels also returned to normal (forgot to mention). They were slightly abnormal 6 months earlier. He had markers for slight mito dysfunction.

I can't say it has effected his 'cognitive' or 'behaviour' as these were okish because of ABA anyway.

I guess the restricted diet and gut issues due to the MMR has taken it's toll? I don't know!

Vit D was extremely low which was worrying.

He seems more grown up too in emotionally and slightly more social (but this last factor could be school also).

Sorry that is not clear is it!

> >

> > 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.

> >

>

[Guest guest]

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be

better but was far worse! Natasa can you list some of the other symptoms or

blood results that were abnormal when ds had POTS at it's worse please to see if

I recognise any in ds?

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic

reaction to ASD or not?

I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic

result was abnormal at first!

This will be a query now for Dr G?

It is like BiPolar can't take antidepressents makes them worse if I remember?

Is there also a another drug that makes a person with Autism worse....is it

Ritalin or something? Can't remember but read something ages ago about either

Ritalin of ADs making person with ASD worse/or more depressed?

I have gone off subject sorry great at doing that!

I was hoping the chloestorel would have seen results in 4 weeks as level so

low...but nothing!

Wait 2 months now to see if the vits will help...I remember trying all the vits

when ds was 3yrs for 9 months....nothing so stopped.

Iwould like to see the muscle weakness improve though maybe I should visit the

other Dr G lol! I always believed the NIDS was fitting for ds but never did that

either!

> > >

> > > 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.

> > >

> >

>

[Guest guest]

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be

better but was far worse! Natasa can you list some of the other symptoms or

blood results that were abnormal when ds had POTS at it's worse please to see if

I recognise any in ds?

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic

reaction to ASD or not?

I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic

result was abnormal at first!

This will be a query now for Dr G?

It is like BiPolar can't take antidepressents makes them worse if I remember?

Is there also a another drug that makes a person with Autism worse....is it

Ritalin or something? Can't remember but read something ages ago about either

Ritalin of ADs making person with ASD worse/or more depressed?

I have gone off subject sorry great at doing that!

I was hoping the chloestorel would have seen results in 4 weeks as level so

low...but nothing!

Wait 2 months now to see if the vits will help...I remember trying all the vits

when ds was 3yrs for 9 months....nothing so stopped.

Iwould like to see the muscle weakness improve though maybe I should visit the

other Dr G lol! I always believed the NIDS was fitting for ds but never did that

either!

> > >

> > > 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.

> > >

> >

>

[Guest guest]

Nope but my reaction was making me wonder if Sam would do well on it. I had school take his BP several times and it ranged from about 89/59 to 149/95 even resting at same time of day.................

Mx

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

[Guest guest]

Nope but my reaction was making me wonder if Sam would do well on it. I had school take his BP several times and it ranged from about 89/59 to 149/95 even resting at same time of day.................

Mx

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

[Guest guest]

Nope but my reaction was making me wonder if Sam would do well on it. I had school take his BP several times and it ranged from about 89/59 to 149/95 even resting at same time of day.................

Mx

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

[Guest guest]

Typo 140/95

Nope but my reaction was making me wonder if Sam would do well on it. I had school take his BP several times and it ranged from about 89/59 to 149/95 even resting at same time of day.................

Mx

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

[Guest guest]

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time. Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…

I cut my beta-blocker into very tiny pieces and take them as needed now.

I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKINGA general linkhttp://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htmHthNatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first!

This will be a query now for Dr G?

It is like BiPolar can't take antidepressents makes them worse if I remember?

Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?

I have gone off subject sorry great at doing that!

I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!

Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.

Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!

> > >

> > > 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.

> > >

> >

>

1 of 1 File(s)

Propranolol POTS trial.pdf

[Guest guest]

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time. Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…

I cut my beta-blocker into very tiny pieces and take them as needed now.

I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKINGA general linkhttp://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htmHthNatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first!

This will be a query now for Dr G?

It is like BiPolar can't take antidepressents makes them worse if I remember?

Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?

I have gone off subject sorry great at doing that!

I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!

Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.

Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!

> > >

> > > 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.

> > >

> >

>

1 of 1 File(s)

Propranolol POTS trial.pdf

[Guest guest]

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time. Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…

I cut my beta-blocker into very tiny pieces and take them as needed now.

I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKINGA general linkhttp://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htmHthNatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?

Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?

I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first!

This will be a query now for Dr G?

It is like BiPolar can't take antidepressents makes them worse if I remember?

Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?

I have gone off subject sorry great at doing that!

I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!

Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.

Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!

> > >

> > > 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.

> > >

> >

>

1 of 1 File(s)

Propranolol POTS trial.pdf

[Guest guest]

Ghosh those reading are from here to China apart! Are sure the second one wasn't

standing up? You can get BP machines that have a memory and therefore you can

check later;)

Was the person qualified to take BP's or was it a machine? Was cuff size correct

each time? There can be a lot of factors that could cause BP read so different

besides physical.

TBH, I would consult a GP first before trying these as the second reading is

very high for a child. It is boardering on needing meds for high Blood pressure!

Are they still monitoring his BP? Maybe you should if they are not anymore.

>

> Nope but my reaction was making me wonder if Sam would do well on it. I had

> school take his BP several times and it ranged from about 89/59 to 149/95

> even resting at same time of day.................

>

> Mx

>

>

> In a message dated 20/02/2012 21:07:47 GMT Standard Time,

> ru345mins@... writes:

>

> Mandi do you have ASD too? Sorry to ask but wondering if this is a classic

> reaction to ASD or not?

>

[Guest guest]

Ghosh those reading are from here to China apart! Are sure the second one wasn't

standing up? You can get BP machines that have a memory and therefore you can

check later;)

Was the person qualified to take BP's or was it a machine? Was cuff size correct

each time? There can be a lot of factors that could cause BP read so different

besides physical.

TBH, I would consult a GP first before trying these as the second reading is

very high for a child. It is boardering on needing meds for high Blood pressure!

Are they still monitoring his BP? Maybe you should if they are not anymore.

>

> Nope but my reaction was making me wonder if Sam would do well on it. I had

> school take his BP several times and it ranged from about 89/59 to 149/95

> even resting at same time of day.................

>

> Mx

>

>

> In a message dated 20/02/2012 21:07:47 GMT Standard Time,

> ru345mins@... writes:

>

> Mandi do you have ASD too? Sorry to ask but wondering if this is a classic

> reaction to ASD or not?

>

[Guest guest]

Yes all done properly but experienced ad qualified nurse, my paed said no worries they go up and down all the time Dr G said much the same thing.............but said to do Autonomic test, we go in 2 weeks, trying to be positive but not holding much hope of Sam complying

Mx

Ghosh those reading are from here to China apart! Are sure the second one wasn't standing up? You can get BP machines that have a memory and therefore you can check later;)Was the person qualified to take BP's or was it a machine? Was cuff size correct each time? There can be a lot of factors that could cause BP read so different besides physical.TBH, I would consult a GP first before trying these as the second reading is very high for a child. It is boardering on needing meds for high Blood pressure!Are they still monitoring his BP? Maybe you should if they are not anymore.>> Nope but my reaction was making me wonder if Sam would do well on it. I had > school take his BP several times and it ranged from about 89/59 to 149/95 > even resting at same time of day.................> > Mx> > > > > Mandi do you have ASD too? Sorry to ask but wondering if this is a classic > reaction to ASD or not?>

[Guest guest]

Yes all done properly but experienced ad qualified nurse, my paed said no worries they go up and down all the time Dr G said much the same thing.............but said to do Autonomic test, we go in 2 weeks, trying to be positive but not holding much hope of Sam complying

Mx

Ghosh those reading are from here to China apart! Are sure the second one wasn't standing up? You can get BP machines that have a memory and therefore you can check later;)Was the person qualified to take BP's or was it a machine? Was cuff size correct each time? There can be a lot of factors that could cause BP read so different besides physical.TBH, I would consult a GP first before trying these as the second reading is very high for a child. It is boardering on needing meds for high Blood pressure!Are they still monitoring his BP? Maybe you should if they are not anymore.>> Nope but my reaction was making me wonder if Sam would do well on it. I had > school take his BP several times and it ranged from about 89/59 to 149/95 > even resting at same time of day.................> > Mx> > > > > Mandi do you have ASD too? Sorry to ask but wondering if this is a classic > reaction to ASD or not?>

[Guest guest]

Salt loading made me better

Mx

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.

I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time.

Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.

Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)

"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…I cut my beta-blocker into very tiny pieces and take them as needed now. I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?

http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKING

A general link

http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm

Hth

Natasa

Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Eur ope >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first! This will be a query now for Dr G?It is like BiPolar can't take antidepressents makes them worse if I remember?Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?I have gone off subject sorry great at doing that!I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!> > >> > > 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.> > >> >>

[Guest guest]

Salt loading made me better

Mx

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.

I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time.

Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.

Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)

"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…I cut my beta-blocker into very tiny pieces and take them as needed now. I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?

http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKING

A general link

http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm

Hth

Natasa

Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Eur ope >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first! This will be a query now for Dr G?It is like BiPolar can't take antidepressents makes them worse if I remember?Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?I have gone off subject sorry great at doing that!I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!> > >> > > 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.> > >> >>

[Guest guest]

Salt loading made me better

Mx

See attached re that trial – POTS much better at 20mg, worse in higher doses. Several CFS docs use beta blockers, always in low doses. Dysautonomia/POTS almost always present in CFS.

I think in children it is difficult to pinpoint as will present slightly differently. Here we went mostly by symptoms: very low stamina, getting dizzy easily, exercise intolerance (used to bring on irritability and aggression! - suspecting hyperadrenergic state), sometimes asking to sit down in the middle of walking etc. BP on the low side but not too bad. Abnormal brain stem activation on Basal Testing (don't know how relevant to OI/POTS, probably is). We are on 10mg propranolol only, once or twice a day, but when started it was at 40mg once a day and he was ok with it. We started in in October but few months prior to starting we saw noticable improvement in stamina and energy. Not sure what exactly was behind it but my bet is combination antihistamines and a regular mineral salts supplementation. Also a prolonged course of penicillin V around that time.

Recently we had a big jump again in physical stamina, able to be active for very long periods of time (unimaginable before), and best of all does not get irritable and aggressive when tired. I can still see slight irritability but is able to control and contain it easily, knock on wood. Again not sure if this is thanks to low dose propranolol – the other thing we introduced recently that I think is helping is 5-HTP.

Here is aninteresting discussion on POTS and beta blockers, mentions saline solutions for OI (also used a lot by CFS docs)

"Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."…I cut my beta-blocker into very tiny pieces and take them as needed now. I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?

http://www.phoenixrising.me/forums/showthread.php?4711-Low-dose-beta-blocker-for-P-O-T-S-is-WORKING

A general link

http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm

Hth

Natasa

Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Eur ope >Date: Mon, 20 Feb 2012 21:07:39 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

ahhh there is a thought! Yes I will question POTS as Dr G expected ds to be better but was far worse! Natasa can you list some of the other symptoms or blood results that were abnormal when ds had POTS at it's worse please to see if I recognise any in ds?Mandi do you have ASD too? Sorry to ask but wondering if this is a classic reaction to ASD or not?I wonder if Dr G knows that Natasa re propanolol and POTS? As ds neuroautonomic result was abnormal at first! This will be a query now for Dr G?It is like BiPolar can't take antidepressents makes them worse if I remember?Is there also a another drug that makes a person with Autism worse....is it Ritalin or something? Can't remember but read something ages ago about either Ritalin of ADs making person with ASD worse/or more depressed?I have gone off subject sorry great at doing that!I was hoping the chloestorel would have seen results in 4 weeks as level so low...but nothing!Wait 2 months now to see if the vits will help...I remember trying all the vits when ds was 3yrs for 9 months....nothing so stopped.Iwould like to see the muscle weakness improve though maybe I should visit the other Dr G lol! I always believed the NIDS was fitting for ds but never did that either!> > >> > > 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.> > >> >>

[Guest guest]

It would be a good idea to get a bunch of hormone tests done - thyroid, adrenal,

sex hormones. Cholesterol is the precursor to pregnenolone from which many

hormones are made in the body. Lack of these hormones leads to so many issues I

can't list them here - but, muscle weakness is one of them.

I really do feel that not enough attention is paid to our children's hormone

levels, especially with the stress that they are under.

There has to be a reason for the low cholesterol - no-one seems to pay much

attention to this other than trying to supplement. This does not seem to work.

Cholesterol is also essential for Vit D synthesis and in order for cholesterol

to be used ATP is needed.

There seem to be alot of our kids are low in cholesterol - does anyone know why?

> > > >

> > > > 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.

> > > >

> > >

> >

>

[Guest guest]

It would be a good idea to get a bunch of hormone tests done - thyroid, adrenal,

sex hormones. Cholesterol is the precursor to pregnenolone from which many

hormones are made in the body. Lack of these hormones leads to so many issues I

can't list them here - but, muscle weakness is one of them.

I really do feel that not enough attention is paid to our children's hormone

levels, especially with the stress that they are under.

There has to be a reason for the low cholesterol - no-one seems to pay much

attention to this other than trying to supplement. This does not seem to work.

Cholesterol is also essential for Vit D synthesis and in order for cholesterol

to be used ATP is needed.

There seem to be alot of our kids are low in cholesterol - does anyone know why?

> > > >

> > > > 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.

> > > >

> > >

> >

>