Re: Neuro AutonomicDisturbances

[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]

Some of those meds are highly dose dependent, ie will give different (sometimes contrasting) effects depending on dosingReply-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.

> > >

> >

>

[Guest guest]

Some of those meds are highly dose dependent, ie will give different (sometimes contrasting) effects depending on dosingReply-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.

> > >

> >

>

[Guest guest]

Some of those meds are highly dose dependent, ie will give different (sometimes contrasting) effects depending on dosingReply-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.

> > >

> >

>

[Guest guest]

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]

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]

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]

Yes but low hormones can easily be downstream of something else. Sometimes supplementing will help, sometimes it won't. But yes agree when things like thyroid are low best to supplement. Adrenal more tricky – if you mean cortisol? Supplementing it can further dysregulate body's own production, imo only ok to give if pulsing. As for other adrenals I don't think it would be wise to play with unless abs certain. Lowering cholesterol could be body's reaction in some types of chronic infections.Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:26:50 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

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]

Yes but low hormones can easily be downstream of something else. Sometimes supplementing will help, sometimes it won't. But yes agree when things like thyroid are low best to supplement. Adrenal more tricky – if you mean cortisol? Supplementing it can further dysregulate body's own production, imo only ok to give if pulsing. As for other adrenals I don't think it would be wise to play with unless abs certain. Lowering cholesterol could be body's reaction in some types of chronic infections.Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:26:50 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

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]

Yes but low hormones can easily be downstream of something else. Sometimes supplementing will help, sometimes it won't. But yes agree when things like thyroid are low best to supplement. Adrenal more tricky – if you mean cortisol? Supplementing it can further dysregulate body's own production, imo only ok to give if pulsing. As for other adrenals I don't think it would be wise to play with unless abs certain. Lowering cholesterol could be body's reaction in some types of chronic infections.Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 22:26:50 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

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]

He needs that test or at least a ECG at hospital to find out what is going

on...as that'll pick up too at hospital and quicker.

Can you get the gel pads and try them on Sam and bribe him with something

massive?

They hurt going on too I think as my boy ended up with purple bruise circles

with the pads as they were on tight...nearly died next day when I saw them!!

> >

> > 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]

He needs that test or at least a ECG at hospital to find out what is going

on...as that'll pick up too at hospital and quicker.

Can you get the gel pads and try them on Sam and bribe him with something

massive?

They hurt going on too I think as my boy ended up with purple bruise circles

with the pads as they were on tight...nearly died next day when I saw them!!

> >

> > 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]

He needs that test or at least a ECG at hospital to find out what is going

on...as that'll pick up too at hospital and quicker.

Can you get the gel pads and try them on Sam and bribe him with something

massive?

They hurt going on too I think as my boy ended up with purple bruise circles

with the pads as they were on tight...nearly died next day when I saw them!!

> >

> > 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]

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

When they get to 15 and are 2 inches taller than you, man sized everywhere else, lots of things are difficult, he has genetic stubbornness too...............

Mx

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

When they get to 15 and are 2 inches taller than you, man sized everywhere else, lots of things are difficult, he has genetic stubbornness too...............

Mx

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

When they get to 15 and are 2 inches taller than you, man sized everywhere else, lots of things are difficult, he has genetic stubbornness too...............

Mx

No way he would sit still for ECG or EEG.....................

He hates sticky in all forms

Mx

He needs that test or at least a ECG at hospital to find out what is going on...as that'll pick up too at hospital and quicker.Can you get the gel pads and try them on Sam and bribe him with something massive?They hurt going on too I think as my boy ended up with purple bruise circles with the pads as they were on tight...nearly died next day when I saw them!!> >> > 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]

Thank you for that will add to list:)

Ds I know adrenals messed up and always in flight mode!

Dr G said re hormones with vit D being so low too so will ask!

Dr G said there is a type of autism that comes from low cholesterol called SLPS

I think? and the child improves with it language cognitive function etc...he has

not improved...but maybe it is still very low?

Thyroid I will ask for as it is in my family also amongst nearly every

autoimmunie condtion!

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?

> > > > >

> > > > > 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]

Thank you for that will add to list:)

Ds I know adrenals messed up and always in flight mode!

Dr G said re hormones with vit D being so low too so will ask!

Dr G said there is a type of autism that comes from low cholesterol called SLPS

I think? and the child improves with it language cognitive function etc...he has

not improved...but maybe it is still very low?

Thyroid I will ask for as it is in my family also amongst nearly every

autoimmunie condtion!

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?

> > > > >

> > > > > 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]

Thank you for that will add to list:)

Ds I know adrenals messed up and always in flight mode!

Dr G said re hormones with vit D being so low too so will ask!

Dr G said there is a type of autism that comes from low cholesterol called SLPS

I think? and the child improves with it language cognitive function etc...he has

not improved...but maybe it is still very low?

Thyroid I will ask for as it is in my family also amongst nearly every

autoimmunie condtion!

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?

> > > > >

> > > > > 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]

We did ketotifen for a few months, good improvements overall but only slight improvements in stamina. Neuroprotek now as well as rotating loratidine, cetirizine and chlorpheniramine. Also h2 blockers (with breaks) - ranitidine rotated with famotidine. Again most antihistamines are NOT tolerated by adults with CFS (including neuroprotek) so god knows how/why this works here (not on me though - I tried ketotifen and was floored!).But as I said pnl at 10mg AND 5–htp seems to be doing the trick as well, as had another big jump recently. 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. I also supplement mineral salts more religiously nowdays and let him have almost as much salty stuff as wants, so that could be playing a role. HthReply-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]

We did ketotifen for a few months, good improvements overall but only slight improvements in stamina. Neuroprotek now as well as rotating loratidine, cetirizine and chlorpheniramine. Also h2 blockers (with breaks) - ranitidine rotated with famotidine. Again most antihistamines are NOT tolerated by adults with CFS (including neuroprotek) so god knows how/why this works here (not on me though - I tried ketotifen and was floored!).But as I said pnl at 10mg AND 5–htp seems to be doing the trick as well, as had another big jump recently. 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. I also supplement mineral salts more religiously nowdays and let him have almost as much salty stuff as wants, so that could be playing a role. HthReply-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]

We did ketotifen for a few months, good improvements overall but only slight improvements in stamina. Neuroprotek now as well as rotating loratidine, cetirizine and chlorpheniramine. Also h2 blockers (with breaks) - ranitidine rotated with famotidine. Again most antihistamines are NOT tolerated by adults with CFS (including neuroprotek) so god knows how/why this works here (not on me though - I tried ketotifen and was floored!).But as I said pnl at 10mg AND 5–htp seems to be doing the trick as well, as had another big jump recently. 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. I also supplement mineral salts more religiously nowdays and let him have almost as much salty stuff as wants, so that could be playing a role. HthReply-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.

> > > >

> > >

> >

>