Re: Autonomic Testing Q please

[Guest guest]

That would be the Full Autonomic Test, full version and expensive. We did the basic version of that – called Baseline autonomic profile or something similar. This baseline costs around £200 - is this what you should be having?They don't do any tilt tables or maneuvers in Baseline version, it only involves lying or sitting very still for 20–30 minutes, with bits (small suction cups) attached to stomach, shoulder, and one clip on middle finger, feeding the monitor. So not really easy or possible if child won't sit still, but they are not asked to 'do' anything. Helps to bring a portable DVD, but if watching something exciting that can mess up readings so they ask you to switch off or turn volume down… Is there anything else that would help sit still you think, something to listen to on headphones? Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Sat, 4 Feb 2012 17:50:54 -0500 (EST)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Autonomic Testing Q please

head still in a spin from telephone consult with DG this morning, wants us to do the basic autonomic testing when we go in March, found this on another site - is this the same type of thing? How is it performed? To see if a disease is affecting the autonomic nervous system, several tests are done to monitor blood pressure, blood flow, heart rate, skin temperature, and sweating. By measuring these functions, it is possible to discover whether or not the autonomic nervous system is functioning normally.Tests to measure blood pressure and heart rate include the tilt table test, a deep breathing test and the Valsalva maneuver. The tilt table test requires that the patient lie on a table that is then raised. The deep breathing test requires the patient to take deep breaths for a minute. The Valsalva maneuver requires that the patient blow into a tube to increase pressure in the chest. While these simple tests are performed, blood pressure and heart rate are monitored.

[Guest guest]

That would be the Full Autonomic Test, full version and expensive. We did the basic version of that – called Baseline autonomic profile or something similar. This baseline costs around £200 - is this what you should be having?They don't do any tilt tables or maneuvers in Baseline version, it only involves lying or sitting very still for 20–30 minutes, with bits (small suction cups) attached to stomach, shoulder, and one clip on middle finger, feeding the monitor. So not really easy or possible if child won't sit still, but they are not asked to 'do' anything. Helps to bring a portable DVD, but if watching something exciting that can mess up readings so they ask you to switch off or turn volume down… Is there anything else that would help sit still you think, something to listen to on headphones? Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Sat, 4 Feb 2012 17:50:54 -0500 (EST)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Autonomic Testing Q please

head still in a spin from telephone consult with DG this morning, wants us to do the basic autonomic testing when we go in March, found this on another site - is this the same type of thing? How is it performed? To see if a disease is affecting the autonomic nervous system, several tests are done to monitor blood pressure, blood flow, heart rate, skin temperature, and sweating. By measuring these functions, it is possible to discover whether or not the autonomic nervous system is functioning normally.Tests to measure blood pressure and heart rate include the tilt table test, a deep breathing test and the Valsalva maneuver. The tilt table test requires that the patient lie on a table that is then raised. The deep breathing test requires the patient to take deep breaths for a minute. The Valsalva maneuver requires that the patient blow into a tube to increase pressure in the chest. While these simple tests are performed, blood pressure and heart rate are monitored.

[Guest guest]

That would be the Full Autonomic Test, full version and expensive. We did the basic version of that – called Baseline autonomic profile or something similar. This baseline costs around £200 - is this what you should be having?They don't do any tilt tables or maneuvers in Baseline version, it only involves lying or sitting very still for 20–30 minutes, with bits (small suction cups) attached to stomach, shoulder, and one clip on middle finger, feeding the monitor. So not really easy or possible if child won't sit still, but they are not asked to 'do' anything. Helps to bring a portable DVD, but if watching something exciting that can mess up readings so they ask you to switch off or turn volume down… Is there anything else that would help sit still you think, something to listen to on headphones? Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Sat, 4 Feb 2012 17:50:54 -0500 (EST)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Autonomic Testing Q please

head still in a spin from telephone consult with DG this morning, wants us to do the basic autonomic testing when we go in March, found this on another site - is this the same type of thing? How is it performed? To see if a disease is affecting the autonomic nervous system, several tests are done to monitor blood pressure, blood flow, heart rate, skin temperature, and sweating. By measuring these functions, it is possible to discover whether or not the autonomic nervous system is functioning normally.Tests to measure blood pressure and heart rate include the tilt table test, a deep breathing test and the Valsalva maneuver. The tilt table test requires that the patient lie on a table that is then raised. The deep breathing test requires the patient to take deep breaths for a minute. The Valsalva maneuver requires that the patient blow into a tube to increase pressure in the chest. While these simple tests are performed, blood pressure and heart rate are monitored.

[Guest guest]

That would be the Full Autonomic Test, full version and expensive. We did the basic version of that – called Baseline autonomic profile or something similar. This baseline costs around £200 - is this what you should be having?

>>Just the baseline one

They don't do any tilt tables or maneuvers in Baseline version, it only involves lying or sitting very still for 20–30 minutes, with bits (small suction cups) attached to stomach, shoulder, and one clip on middle finger, feeding the monitor. So not really easy or possible if child won't sit still, but they are not asked to 'do' anything. Helps to bring a portable DVD, but if watching something exciting that can mess up readings so they ask you to switch off or turn volume down… Is there anything else that would help sit still you think, something to listen to on headphones?

>>Watching DVD's does make him kinda excited, jolly and thought when it was suggested that if I bring who does his TST, he would lay down still for her but whether she wants to get up at 6.00am and come with me on a Saturday is another thing................hmmmmmmmmmmmm

Thanks for help

Mandi x

[Guest guest]

Its very similar to having a chest ECG if you know what that is like? Its leads

on sticky pads on the chest and the finger monitor. gets upset by the

sticky pads coming off and by having to stop talking (he talks incessantly) and

by having to keep still. But it is not painful at all and not frightening. I

think Dr Goyal is trying to assess how irritable the brain is, will be

having his third in 6 months during half term as he wants to see if removing

strep has helped.

>

>

>

> In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> neno@... writes:

>

> That would be the Full Autonomic Test, full version and expensive. We did

> the basic version of that †" called Baseline autonomic profile or something

> similar. This baseline costs around £200 - is this what you should be

> having?

>

> >>Just the baseline one

>

>

>

> They don't do any tilt tables or maneuvers in Baseline version, it only

> involves lying or sitting very still for 20†" 30 minutes, with bits (small

> suction cups) attached to stomach, shoulder, and one clip on middle finger,

> feeding the monitor. So not really easy or possible if child won't sit still,

> but they are not asked to 'do' anything. Helps to bring a portable DVD, but

> if watching something exciting that can mess up readings so they ask you

> to switch off or turn volume down… Is there anything else that would help

> sit still you think, something to listen to on headphones?

>

> >>Watching DVD's does make him kinda excited, jolly and thought when it

> was suggested that if I bring who does his TST, he would lay down still

> for her but whether she wants to get up at 6.00am and come with me on a

> Saturday is another thing................hmmmmmmmmmmmm

> Thanks for help

> Mandi x

>

[Guest guest]

Its very similar to having a chest ECG if you know what that is like? Its leads

on sticky pads on the chest and the finger monitor. gets upset by the

sticky pads coming off and by having to stop talking (he talks incessantly) and

by having to keep still. But it is not painful at all and not frightening. I

think Dr Goyal is trying to assess how irritable the brain is, will be

having his third in 6 months during half term as he wants to see if removing

strep has helped.

>

>

>

> In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> neno@... writes:

>

> That would be the Full Autonomic Test, full version and expensive. We did

> the basic version of that †" called Baseline autonomic profile or something

> similar. This baseline costs around £200 - is this what you should be

> having?

>

> >>Just the baseline one

>

>

>

> They don't do any tilt tables or maneuvers in Baseline version, it only

> involves lying or sitting very still for 20†" 30 minutes, with bits (small

> suction cups) attached to stomach, shoulder, and one clip on middle finger,

> feeding the monitor. So not really easy or possible if child won't sit still,

> but they are not asked to 'do' anything. Helps to bring a portable DVD, but

> if watching something exciting that can mess up readings so they ask you

> to switch off or turn volume down… Is there anything else that would help

> sit still you think, something to listen to on headphones?

>

> >>Watching DVD's does make him kinda excited, jolly and thought when it

> was suggested that if I bring who does his TST, he would lay down still

> for her but whether she wants to get up at 6.00am and come with me on a

> Saturday is another thing................hmmmmmmmmmmmm

> Thanks for help

> Mandi x

>

[Guest guest]

Its very similar to having a chest ECG if you know what that is like? Its leads

on sticky pads on the chest and the finger monitor. gets upset by the

sticky pads coming off and by having to stop talking (he talks incessantly) and

by having to keep still. But it is not painful at all and not frightening. I

think Dr Goyal is trying to assess how irritable the brain is, will be

having his third in 6 months during half term as he wants to see if removing

strep has helped.

>

>

>

> In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> neno@... writes:

>

> That would be the Full Autonomic Test, full version and expensive. We did

> the basic version of that †" called Baseline autonomic profile or something

> similar. This baseline costs around £200 - is this what you should be

> having?

>

> >>Just the baseline one

>

>

>

> They don't do any tilt tables or maneuvers in Baseline version, it only

> involves lying or sitting very still for 20†" 30 minutes, with bits (small

> suction cups) attached to stomach, shoulder, and one clip on middle finger,

> feeding the monitor. So not really easy or possible if child won't sit still,

> but they are not asked to 'do' anything. Helps to bring a portable DVD, but

> if watching something exciting that can mess up readings so they ask you

> to switch off or turn volume down… Is there anything else that would help

> sit still you think, something to listen to on headphones?

>

> >>Watching DVD's does make him kinda excited, jolly and thought when it

> was suggested that if I bring who does his TST, he would lay down still

> for her but whether she wants to get up at 6.00am and come with me on a

> Saturday is another thing................hmmmmmmmmmmmm

> Thanks for help

> Mandi x

>

[Guest guest]

Do they have proper resuscitation facilities if something goes wrong? Do they

have a Consultant anaesthetist present?

Margaret

> >> >

> >> >

> >> >

> >> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> >> > neno@ writes:

> >> >

> >> > That would be the Full Autonomic Test, full version and expensive. We

did

> >> > the basic version of that †" called Baseline autonomic profile or

> >> something

> >> > similar. This baseline costs around £200 - is this what you should be

> >> > having?

> >> >

> >>>> > >>Just the baseline one

> >> >

> >> >

> >> >

> >> > They don't do any tilt tables or maneuvers in Baseline version, it only

> >> > involves lying or sitting very still for 20†" 30 minutes, with bits

(small

> >> > suction cups) attached to stomach, shoulder, and one clip on middle

> >> finger,

> >> > feeding the monitor. So not really easy or possible if child won't sit

> >> still,

> >> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> >> but

> >> > if watching something exciting that can mess up readings so they ask you

> >> > to switch off or turn volume down… Is there anything else that

would

> >> help

> >> > sit still you think, something to listen to on headphones?

> >> >

> >>>> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> >> > was suggested that if I bring who does his TST, he would lay down

> >> still

> >> > for her but whether she wants to get up at 6.00am and come with me on a

> >> > Saturday is another thing................hmmmmmmmmmmmm

> >> > Thanks for help

> >> > Mandi x

> >> >

> >

> >

> >

>

[Guest guest]

Do they have proper resuscitation facilities if something goes wrong? Do they

have a Consultant anaesthetist present?

Margaret

> >> >

> >> >

> >> >

> >> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> >> > neno@ writes:

> >> >

> >> > That would be the Full Autonomic Test, full version and expensive. We

did

> >> > the basic version of that †" called Baseline autonomic profile or

> >> something

> >> > similar. This baseline costs around £200 - is this what you should be

> >> > having?

> >> >

> >>>> > >>Just the baseline one

> >> >

> >> >

> >> >

> >> > They don't do any tilt tables or maneuvers in Baseline version, it only

> >> > involves lying or sitting very still for 20†" 30 minutes, with bits

(small

> >> > suction cups) attached to stomach, shoulder, and one clip on middle

> >> finger,

> >> > feeding the monitor. So not really easy or possible if child won't sit

> >> still,

> >> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> >> but

> >> > if watching something exciting that can mess up readings so they ask you

> >> > to switch off or turn volume down… Is there anything else that

would

> >> help

> >> > sit still you think, something to listen to on headphones?

> >> >

> >>>> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> >> > was suggested that if I bring who does his TST, he would lay down

> >> still

> >> > for her but whether she wants to get up at 6.00am and come with me on a

> >> > Saturday is another thing................hmmmmmmmmmmmm

> >> > Thanks for help

> >> > Mandi x

> >> >

> >

> >

> >

>

[Guest guest]

Do they have proper resuscitation facilities if something goes wrong? Do they

have a Consultant anaesthetist present?

Margaret

> >> >

> >> >

> >> >

> >> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> >> > neno@ writes:

> >> >

> >> > That would be the Full Autonomic Test, full version and expensive. We

did

> >> > the basic version of that †" called Baseline autonomic profile or

> >> something

> >> > similar. This baseline costs around £200 - is this what you should be

> >> > having?

> >> >

> >>>> > >>Just the baseline one

> >> >

> >> >

> >> >

> >> > They don't do any tilt tables or maneuvers in Baseline version, it only

> >> > involves lying or sitting very still for 20†" 30 minutes, with bits

(small

> >> > suction cups) attached to stomach, shoulder, and one clip on middle

> >> finger,

> >> > feeding the monitor. So not really easy or possible if child won't sit

> >> still,

> >> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> >> but

> >> > if watching something exciting that can mess up readings so they ask you

> >> > to switch off or turn volume down… Is there anything else that

would

> >> help

> >> > sit still you think, something to listen to on headphones?

> >> >

> >>>> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> >> > was suggested that if I bring who does his TST, he would lay down

> >> still

> >> > for her but whether she wants to get up at 6.00am and come with me on a

> >> > Saturday is another thing................hmmmmmmmmmmmm

> >> > Thanks for help

> >> > Mandi x

> >> >

> >

> >

> >

>

[Guest guest]

get them to do an EEG before you have seen the neuro. The paed might be able to

order one.

Margaret

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive. We

> did

> > the basic version of that †" called Baseline autonomic profile or

> something

> > similar. This baseline costs around £200 - is this what you should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it only

> > involves lying or sitting very still for 20†" 30 minutes, with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> but

> > if watching something exciting that can mess up readings so they ask you

> > to switch off or turn volume down… Is there anything else that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when it

> > was suggested that if I bring who does his TST, he would lay down

> still

> > for her but whether she wants to get up at 6.00am and come with me on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

get them to do an EEG before you have seen the neuro. The paed might be able to

order one.

Margaret

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive. We

> did

> > the basic version of that †" called Baseline autonomic profile or

> something

> > similar. This baseline costs around £200 - is this what you should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it only

> > involves lying or sitting very still for 20†" 30 minutes, with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> but

> > if watching something exciting that can mess up readings so they ask you

> > to switch off or turn volume down… Is there anything else that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when it

> > was suggested that if I bring who does his TST, he would lay down

> still

> > for her but whether she wants to get up at 6.00am and come with me on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

get them to do an EEG before you have seen the neuro. The paed might be able to

order one.

Margaret

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive. We

> did

> > the basic version of that †" called Baseline autonomic profile or

> something

> > similar. This baseline costs around £200 - is this what you should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it only

> > involves lying or sitting very still for 20†" 30 minutes, with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> but

> > if watching something exciting that can mess up readings so they ask you

> > to switch off or turn volume down… Is there anything else that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when it

> > was suggested that if I bring who does his TST, he would lay down

> still

> > for her but whether she wants to get up at 6.00am and come with me on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

'Ouch', so sorry to hear this Mandi, hope the Lamotrigine does the job

for Sam. I really understand how it pains to see your child bruised and

hurt. We had lots of these falls in the early years but after gaining a

permanent helmet for him, it reduced the injuries from the falls.

Thinking of you both.

emily x

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive.

We

> did

> > the basic version of that †" called Baseline autonomic

profile or

> something

> > similar. This baseline costs around £200 - is this what you

should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it

only

> > involves lying or sitting very still for 20†" 30 minutes,

with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't

sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable

DVD,

> but

> > if watching something exciting that can mess up readings so they ask

you

> > to switch off or turn volume down… Is there anything else

that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> > was suggested that if I bring who does his TST, he would lay

down

> still

> > for her but whether she wants to get up at 6.00am and come with me

on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

'Ouch', so sorry to hear this Mandi, hope the Lamotrigine does the job

for Sam. I really understand how it pains to see your child bruised and

hurt. We had lots of these falls in the early years but after gaining a

permanent helmet for him, it reduced the injuries from the falls.

Thinking of you both.

emily x

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive.

We

> did

> > the basic version of that †" called Baseline autonomic

profile or

> something

> > similar. This baseline costs around £200 - is this what you

should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it

only

> > involves lying or sitting very still for 20†" 30 minutes,

with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't

sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable

DVD,

> but

> > if watching something exciting that can mess up readings so they ask

you

> > to switch off or turn volume down… Is there anything else

that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> > was suggested that if I bring who does his TST, he would lay

down

> still

> > for her but whether she wants to get up at 6.00am and come with me

on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

'Ouch', so sorry to hear this Mandi, hope the Lamotrigine does the job

for Sam. I really understand how it pains to see your child bruised and

hurt. We had lots of these falls in the early years but after gaining a

permanent helmet for him, it reduced the injuries from the falls.

Thinking of you both.

emily x

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive.

We

> did

> > the basic version of that †" called Baseline autonomic

profile or

> something

> > similar. This baseline costs around £200 - is this what you

should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it

only

> > involves lying or sitting very still for 20†" 30 minutes,

with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't

sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable

DVD,

> but

> > if watching something exciting that can mess up readings so they ask

you

> > to switch off or turn volume down… Is there anything else

that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when

it

> > was suggested that if I bring who does his TST, he would lay

down

> still

> > for her but whether she wants to get up at 6.00am and come with me

on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>

[Guest guest]

Mandi,

Sorry that you have to go through this. The Lamictal is what we're using here.

Children's dispersable, chewable which comes in 25mg is the only milk free

version. For us, excluding the milk and gluten is very critical for seizure

control. The Lamictal does not block seizures w a dietary infraction but does

seem to limit the number of seizures that follow. I hope you find some good

answers w neuro.

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive.

> We

> > did

> > > the basic version of that †" called Baseline autonomic

> profile or

> > something

> > > similar. This baseline costs around £200 - is this what you

> should be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes,

> with bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't

> sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

> that would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me

> on a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

Mandi,

Sorry that you have to go through this. The Lamictal is what we're using here.

Children's dispersable, chewable which comes in 25mg is the only milk free

version. For us, excluding the milk and gluten is very critical for seizure

control. The Lamictal does not block seizures w a dietary infraction but does

seem to limit the number of seizures that follow. I hope you find some good

answers w neuro.

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive.

> We

> > did

> > > the basic version of that †" called Baseline autonomic

> profile or

> > something

> > > similar. This baseline costs around £200 - is this what you

> should be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes,

> with bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't

> sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

> that would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me

> on a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

Mandi,

Sorry that you have to go through this. The Lamictal is what we're using here.

Children's dispersable, chewable which comes in 25mg is the only milk free

version. For us, excluding the milk and gluten is very critical for seizure

control. The Lamictal does not block seizures w a dietary infraction but does

seem to limit the number of seizures that follow. I hope you find some good

answers w neuro.

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive.

> We

> > did

> > > the basic version of that †" called Baseline autonomic

> profile or

> > something

> > > similar. This baseline costs around £200 - is this what you

> should be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes,

> with bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't

> sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

> that would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me

> on a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

I think we have the same problem of non co-operation. However, if they tried to

do a 24-hour or 48 hour EEG and had the patience to get him used to the leads,

cap and backpack, they might get him to wear it for long enough to find

something. The type of abnormal brain activity helps inform what sort of AED to

use.

Another very useful thing is to film the seizures.

The national centre for childhood epilepsy at Lingfield Surrey say that all the

children they do EEGs on have LDs, often autism, and are difficult to get to

co-operate - but they say they succeed in getting it. So if his seizures are

complex and you don't get good control wiht one drug I would ask for a referral

there for assessment.

I'm still trying to get the report from the EEG they did last April. All we have

been told is that no generalised activity was seen. Now that could mean the EEG

was a failure and that nothing abnormal was seen. I have asked for the report. I

have asked the epilepsy nurses to tell me what the report says. No result. They

say they aren't allowed to tell me over the phone. The Neuro now says if I want

results I have to go through the Access to Medical Records people - up to £50

and 40 days from the request. So I have sent off the form and said I want to

inspect the records first before they are copied and I want to go in this week.

(At the GP's if I ask they say " What do you want? " and print it out on the

spot.But the hospital doesn't share test results with the GP....)

Margaret

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive. We

> > did

> > > the basic version of that †" called Baseline autonomic profile

or

> > something

> > > similar. This baseline costs around £200 - is this what you

should

> be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes, with

bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

that

> would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me on

> a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

I think we have the same problem of non co-operation. However, if they tried to

do a 24-hour or 48 hour EEG and had the patience to get him used to the leads,

cap and backpack, they might get him to wear it for long enough to find

something. The type of abnormal brain activity helps inform what sort of AED to

use.

Another very useful thing is to film the seizures.

The national centre for childhood epilepsy at Lingfield Surrey say that all the

children they do EEGs on have LDs, often autism, and are difficult to get to

co-operate - but they say they succeed in getting it. So if his seizures are

complex and you don't get good control wiht one drug I would ask for a referral

there for assessment.

I'm still trying to get the report from the EEG they did last April. All we have

been told is that no generalised activity was seen. Now that could mean the EEG

was a failure and that nothing abnormal was seen. I have asked for the report. I

have asked the epilepsy nurses to tell me what the report says. No result. They

say they aren't allowed to tell me over the phone. The Neuro now says if I want

results I have to go through the Access to Medical Records people - up to £50

and 40 days from the request. So I have sent off the form and said I want to

inspect the records first before they are copied and I want to go in this week.

(At the GP's if I ask they say " What do you want? " and print it out on the

spot.But the hospital doesn't share test results with the GP....)

Margaret

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive. We

> > did

> > > the basic version of that †" called Baseline autonomic profile

or

> > something

> > > similar. This baseline costs around £200 - is this what you

should

> be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes, with

bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

that

> would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me on

> a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

I think we have the same problem of non co-operation. However, if they tried to

do a 24-hour or 48 hour EEG and had the patience to get him used to the leads,

cap and backpack, they might get him to wear it for long enough to find

something. The type of abnormal brain activity helps inform what sort of AED to

use.

Another very useful thing is to film the seizures.

The national centre for childhood epilepsy at Lingfield Surrey say that all the

children they do EEGs on have LDs, often autism, and are difficult to get to

co-operate - but they say they succeed in getting it. So if his seizures are

complex and you don't get good control wiht one drug I would ask for a referral

there for assessment.

I'm still trying to get the report from the EEG they did last April. All we have

been told is that no generalised activity was seen. Now that could mean the EEG

was a failure and that nothing abnormal was seen. I have asked for the report. I

have asked the epilepsy nurses to tell me what the report says. No result. They

say they aren't allowed to tell me over the phone. The Neuro now says if I want

results I have to go through the Access to Medical Records people - up to £50

and 40 days from the request. So I have sent off the form and said I want to

inspect the records first before they are copied and I want to go in this week.

(At the GP's if I ask they say " What do you want? " and print it out on the

spot.But the hospital doesn't share test results with the GP....)

Margaret

> > >

> > >

> > >

> > > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > > neno@ writes:

> > >

> > > That would be the Full Autonomic Test, full version and expensive. We

> > did

> > > the basic version of that †" called Baseline autonomic profile

or

> > something

> > > similar. This baseline costs around £200 - is this what you

should

> be

> > > having?

> > >

> > > >>Just the baseline one

> > >

> > >

> > >

> > > They don't do any tilt tables or maneuvers in Baseline version, it

> only

> > > involves lying or sitting very still for 20†" 30 minutes, with

bits

> > (small

> > > suction cups) attached to stomach, shoulder, and one clip on middle

> > finger,

> > > feeding the monitor. So not really easy or possible if child won't sit

> > still,

> > > but they are not asked to 'do' anything. Helps to bring a portable

> DVD,

> > but

> > > if watching something exciting that can mess up readings so they ask

> you

> > > to switch off or turn volume down… Is there anything else

that

> would

> > help

> > > sit still you think, something to listen to on headphones?

> > >

> > > >>Watching DVD's does make him kinda excited, jolly and thought when

> it

> > > was suggested that if I bring who does his TST, he would lay

> down

> > still

> > > for her but whether she wants to get up at 6.00am and come with me on

> a

> > > Saturday is another thing................hmmmmmmmmmmmm

> > > Thanks for help

> > > Mandi x

> > >

> >

>

[Guest guest]

Yes - they don't give details to the GP either. Blooming useless. i feel an

official complaint coming on... (That's after I've pushed CAMH for action re a

referral to the Maudsley.)

Margaret

>

> I don't understand why they are being so obstructive???? The GP should have

> a letter from them in H's records, maybe they just put the no generalised

> stuff in there too?

>

> Mx

>

>

> In a message dated 06/02/2012 05:04:51 GMT Standard Time,

> m.collins9@... writes:

>

> I'm still trying to get the report from the EEG they did last April. All

> we have been told is that no generalised activity was seen. Now that could

> mean the EEG was a failure and that nothing abnormal was seen. I have asked

> for the report. I have asked the epilepsy nurses to tell me what the report

> says. No result. They say they aren't allowed to tell me over the phone.

> The Neuro now says if I want results I have to go through the Access to

> Medical Records people - up to £50 and 40 days from the request. So I have

sent

> off the form and said I want to inspect the records first before they are

> copied and I want to go in this week. (At the GP's if I ask they say " What

> do you want? " and print it out on the spot.But the hospital doesn't share

> test results with the GP....)

>

[Guest guest]

Yes - they don't give details to the GP either. Blooming useless. i feel an

official complaint coming on... (That's after I've pushed CAMH for action re a

referral to the Maudsley.)

Margaret

>

> I don't understand why they are being so obstructive???? The GP should have

> a letter from them in H's records, maybe they just put the no generalised

> stuff in there too?

>

> Mx

>

>

> In a message dated 06/02/2012 05:04:51 GMT Standard Time,

> m.collins9@... writes:

>

> I'm still trying to get the report from the EEG they did last April. All

> we have been told is that no generalised activity was seen. Now that could

> mean the EEG was a failure and that nothing abnormal was seen. I have asked

> for the report. I have asked the epilepsy nurses to tell me what the report

> says. No result. They say they aren't allowed to tell me over the phone.

> The Neuro now says if I want results I have to go through the Access to

> Medical Records people - up to £50 and 40 days from the request. So I have

sent

> off the form and said I want to inspect the records first before they are

> copied and I want to go in this week. (At the GP's if I ask they say " What

> do you want? " and print it out on the spot.But the hospital doesn't share

> test results with the GP....)

>

[Guest guest]

We had the baseline one done, Joe took his ipad and was happy to play on that

throughout. Needed some persuasion to keep the finger probe thing on but

otherwise fine.

x

> >

> >

> >

> > In a message dated 04/02/2012 23:28:05 GMT Standard Time,

> > neno@ writes:

> >

> > That would be the Full Autonomic Test, full version and expensive. We

> did

> > the basic version of that †" called Baseline autonomic profile or

> something

> > similar. This baseline costs around £200 - is this what you should be

> > having?

> >

> > >>Just the baseline one

> >

> >

> >

> > They don't do any tilt tables or maneuvers in Baseline version, it only

> > involves lying or sitting very still for 20†" 30 minutes, with bits

> (small

> > suction cups) attached to stomach, shoulder, and one clip on middle

> finger,

> > feeding the monitor. So not really easy or possible if child won't sit

> still,

> > but they are not asked to 'do' anything. Helps to bring a portable DVD,

> but

> > if watching something exciting that can mess up readings so they ask you

> > to switch off or turn volume down… Is there anything else that would

> help

> > sit still you think, something to listen to on headphones?

> >

> > >>Watching DVD's does make him kinda excited, jolly and thought when it

> > was suggested that if I bring who does his TST, he would lay down

> still

> > for her but whether she wants to get up at 6.00am and come with me on a

> > Saturday is another thing................hmmmmmmmmmmmm

> > Thanks for help

> > Mandi x

> >

>