Re: Neuro AutonomicDisturbances

[Guest guest]

Ps no clammy skin but cold feet oftenReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:36:15 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Yes POTS causes disturbances on autonomic reading....like your ds had too Natasa!

2 weeks ago he walked 50 feet from car to Paed's room....he laid down on the couch for the whole appointment...people think he is lazy, but he cannot cope! Even queing in the shop it is 'I am going to find a seat!'. When I was 7 years old I had loads of energy all day long!

I can see the exercise intol and also becomes very agitated almost aggressive and meltdowns when tired...I call them triggers and tiredness and hunger are the main meltdown causes these days!

Ds would sit down in a busy shop it used to be a nightmare...he can't walk fast as complains he is tired...he can't do anything physical fast.

He craves salt foods all the time...so this may be good then!

What antihistermine did your ds have Natasa? Do you think this may have caused mass cells hence improvement. My ds been on Ketofin(sp) for 5 months...if anything it causes stuffy nose symptoms (so does opposite). So the stamina etc improved before the propanalol then! Sounds like the salts and antihists?

Does your ds have a high ESR? Ds has this and Dr G wants to get to the bottom of what infection is causing this (hence Paed will do Glandular Fever test next)...don't know if their is a specific CFS test I could add on?Does your son have weird skin too... clamy? It is like his thermostat is broke?

> > > >

> > > > 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]

Ps no clammy skin but cold feet oftenReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:36:15 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Yes POTS causes disturbances on autonomic reading....like your ds had too Natasa!

2 weeks ago he walked 50 feet from car to Paed's room....he laid down on the couch for the whole appointment...people think he is lazy, but he cannot cope! Even queing in the shop it is 'I am going to find a seat!'. When I was 7 years old I had loads of energy all day long!

I can see the exercise intol and also becomes very agitated almost aggressive and meltdowns when tired...I call them triggers and tiredness and hunger are the main meltdown causes these days!

Ds would sit down in a busy shop it used to be a nightmare...he can't walk fast as complains he is tired...he can't do anything physical fast.

He craves salt foods all the time...so this may be good then!

What antihistermine did your ds have Natasa? Do you think this may have caused mass cells hence improvement. My ds been on Ketofin(sp) for 5 months...if anything it causes stuffy nose symptoms (so does opposite). So the stamina etc improved before the propanalol then! Sounds like the salts and antihists?

Does your ds have a high ESR? Ds has this and Dr G wants to get to the bottom of what infection is causing this (hence Paed will do Glandular Fever test next)...don't know if their is a specific CFS test I could add on?Does your son have weird skin too... clamy? It is like his thermostat is broke?

> > > >

> > > > 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]

Ps no clammy skin but cold feet oftenReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:36:15 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Yes POTS causes disturbances on autonomic reading....like your ds had too Natasa!

2 weeks ago he walked 50 feet from car to Paed's room....he laid down on the couch for the whole appointment...people think he is lazy, but he cannot cope! Even queing in the shop it is 'I am going to find a seat!'. When I was 7 years old I had loads of energy all day long!

I can see the exercise intol and also becomes very agitated almost aggressive and meltdowns when tired...I call them triggers and tiredness and hunger are the main meltdown causes these days!

Ds would sit down in a busy shop it used to be a nightmare...he can't walk fast as complains he is tired...he can't do anything physical fast.

He craves salt foods all the time...so this may be good then!

What antihistermine did your ds have Natasa? Do you think this may have caused mass cells hence improvement. My ds been on Ketofin(sp) for 5 months...if anything it causes stuffy nose symptoms (so does opposite). So the stamina etc improved before the propanalol then! Sounds like the salts and antihists?

Does your ds have a high ESR? Ds has this and Dr G wants to get to the bottom of what infection is causing this (hence Paed will do Glandular Fever test next)...don't know if their is a specific CFS test I could add on?Does your son have weird skin too... clamy? It is like his thermostat is broke?

> > > >

> > > > 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]

Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

Mx

I am shocked as his calcium was in high end of normal! Considering Vit D so low? He hasn't had dairy products at all for over 4 years. So where calcium has come from I do not know?

[Guest guest]

Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

Mx

I am shocked as his calcium was in high end of normal! Considering Vit D so low? He hasn't had dairy products at all for over 4 years. So where calcium has come from I do not know?

[Guest guest]

Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

Mx

I am shocked as his calcium was in high end of normal! Considering Vit D so low? He hasn't had dairy products at all for over 4 years. So where calcium has come from I do not know?

[Guest guest]

How totally awesome!

Mx

Suddenly started to LOVE football, asking to go to holiday camps where spent 3 mornings in a row running or standing upright. On the first day I went to pick him up 3pm expecting to find him sitting in a corner complaining or looking dazed but he was up there running length of field back and forth, no sign of fatigue.

[Guest guest]

How totally awesome!

Mx

Suddenly started to LOVE football, asking to go to holiday camps where spent 3 mornings in a row running or standing upright. On the first day I went to pick him up 3pm expecting to find him sitting in a corner complaining or looking dazed but he was up there running length of field back and forth, no sign of fatigue.

[Guest guest]

How totally awesome!

Mx

Suddenly started to LOVE football, asking to go to holiday camps where spent 3 mornings in a row running or standing upright. On the first day I went to pick him up 3pm expecting to find him sitting in a corner complaining or looking dazed but he was up there running length of field back and forth, no sign of fatigue.

[Guest guest]

oh I didn't realise that about cholesterol. Dr G has tested for measels, CMV,

Herpies, and next Glandular...what other infection can he test for...so I can

ask!

When I asked could the endocrine system cause ds autism I was basically laughed

at couple years ago, maybe they know more now?

> > > > >

> > > > > 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]

oh I didn't realise that about cholesterol. Dr G has tested for measels, CMV,

Herpies, and next Glandular...what other infection can he test for...so I can

ask!

When I asked could the endocrine system cause ds autism I was basically laughed

at couple years ago, maybe they know more now?

> > > > >

> > > > > 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]

oh I didn't realise that about cholesterol. Dr G has tested for measels, CMV,

Herpies, and next Glandular...what other infection can he test for...so I can

ask!

When I asked could the endocrine system cause ds autism I was basically laughed

at couple years ago, maybe they know more now?

> > > > >

> > > > > 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]

oh dear and you don't want to go down general anest route as you would have to

do hospital etc.

Will BS still charge you if Sam can't tolerate the test?

> > >

> > > 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]

oh dear and you don't want to go down general anest route as you would have to

do hospital etc.

Will BS still charge you if Sam can't tolerate the test?

> > >

> > > 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]

oh dear and you don't want to go down general anest route as you would have to

do hospital etc.

Will BS still charge you if Sam can't tolerate the test?

> > >

> > > 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]

I will be starting Neuroprotek too on him after I get vits started. There has

been gross motor improvements in school doing PE and balance has improved. Can

climb high box and jump now, his 1:1 was lifting the lump on and carrying him

off at first (ouch back!). But independent doing it now. He doesnt get sleepy on

ketof at all.

Wow soccer clubs...that is a dream:)

I am going to ask about low dose propanalol and 5-HTP never heard of ths will

look it up.

Thank you all so much to look at overwelmed a bit but grateful:)

> > > > >

> > > > > 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]

I will be starting Neuroprotek too on him after I get vits started. There has

been gross motor improvements in school doing PE and balance has improved. Can

climb high box and jump now, his 1:1 was lifting the lump on and carrying him

off at first (ouch back!). But independent doing it now. He doesnt get sleepy on

ketof at all.

Wow soccer clubs...that is a dream:)

I am going to ask about low dose propanalol and 5-HTP never heard of ths will

look it up.

Thank you all so much to look at overwelmed a bit but grateful:)

> > > > >

> > > > > 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]

he had higher outer calcium levels than inner cellular when 3 yrs old! But we

didn't do that test this time just 'calcium' not inner/outer test. never tested

K.

>

> Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

> Mx

>

>

> In a message dated 20/02/2012 22:50:03 GMT Standard Time,

> ru345mins@... writes:

>

> I am shocked as his calcium was in high end of normal! Considering Vit D

> so low? He hasn't had dairy products at all for over 4 years. So where

> calcium has come from I do not know?

>

[Guest guest]

he had higher outer calcium levels than inner cellular when 3 yrs old! But we

didn't do that test this time just 'calcium' not inner/outer test. never tested

K.

>

> Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

> Mx

>

>

> In a message dated 20/02/2012 22:50:03 GMT Standard Time,

> ru345mins@... writes:

>

> I am shocked as his calcium was in high end of normal! Considering Vit D

> so low? He hasn't had dairy products at all for over 4 years. So where

> calcium has come from I do not know?

>

[Guest guest]

he had higher outer calcium levels than inner cellular when 3 yrs old! But we

didn't do that test this time just 'calcium' not inner/outer test. never tested

K.

>

> Calcium doesn't go where its supposed to when Vit D (and K) out of balance.

> Mx

>

>

> In a message dated 20/02/2012 22:50:03 GMT Standard Time,

> ru345mins@... writes:

>

> I am shocked as his calcium was in high end of normal! Considering Vit D

> so low? He hasn't had dairy products at all for over 4 years. So where

> calcium has come from I do not know?

>

[Guest guest]

Well, I think that the endocrine system can cause autism. If you had seen my dd

just a few years ago she was heading for residential - not speaking to anyone,

behaviour at home off the wall, diagnosed with ASD.

All gone now with hormone supplementation. Everyone is amazed at the difference.

The lack of hormones explain why she couldn't cope with TST, even though it

helped. It's a balancing act - but, life is completely different now. The

improvement in her cognitive skills are the most amazing.

We are left with the effects of the stroke that she had after the Vit K

overdose.

> > > > > >

> > > > > > 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]

Well, I think that the endocrine system can cause autism. If you had seen my dd

just a few years ago she was heading for residential - not speaking to anyone,

behaviour at home off the wall, diagnosed with ASD.

All gone now with hormone supplementation. Everyone is amazed at the difference.

The lack of hormones explain why she couldn't cope with TST, even though it

helped. It's a balancing act - but, life is completely different now. The

improvement in her cognitive skills are the most amazing.

We are left with the effects of the stroke that she had after the Vit K

overdose.

> > > > > >

> > > > > > 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]

Well, I think that the endocrine system can cause autism. If you had seen my dd

just a few years ago she was heading for residential - not speaking to anyone,

behaviour at home off the wall, diagnosed with ASD.

All gone now with hormone supplementation. Everyone is amazed at the difference.

The lack of hormones explain why she couldn't cope with TST, even though it

helped. It's a balancing act - but, life is completely different now. The

improvement in her cognitive skills are the most amazing.

We are left with the effects of the stroke that she had after the Vit K

overdose.

> > > > > >

> > > > > > 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]

Yes, thanks! We are still in shock here, not to mention the surprise of sudden interest in something so 'normal' LOL. He does look out of place there though, as motor skills/copying and coordination far from good, can't dribble or basic pass to save his life, gets outrun by toddlers half his size etc BUT doesn't seem to be bothered, at least for now, and talks about playing for Arsenal one day ) Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 17:52:19 -0500 (EST)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Re: Neuro AutonomicDisturbances

How totally awesome!Mx Suddenly started to LOVE football, asking to go to holiday camps where spent 3 mornings in a row running or standing upright. On the first day I went to pick him up 3pm expecting to find him sitting in a corner complaining or looking dazed but he was up there running length of field back and forth, no sign of fatigue.

[Guest guest]

Omg sorry to hear that. What was the dose? Which hormones are you supplementing now?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 23:22:42 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

Well, I think that the endocrine system can cause autism. If you had seen my dd just a few years ago she was heading for residential - not speaking to anyone, behaviour at home off the wall, diagnosed with ASD.

All gone now with hormone supplementation. Everyone is amazed at the difference. The lack of hormones explain why she couldn't cope with TST, even though it helped. It's a balancing act - but, life is completely different now. The improvement in her cognitive skills are the most amazing.

We are left with the effects of the stroke that she had after the Vit K overdose.

> > > > > >

> > > > > > 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.

> > > > > >

> > > > >

> > > >

> > >

> >

>