Re: Prozac/ piracetam and Natasa

[Guest guest]

Thank you for your thoughts, it really helps.

Sara, that's good to hear! How does it work? I think Paed would try something

else in a heart beat. But I don't want to muck about with him, if it's bad for

us I can't imagine what it's like for him.

Natasa he is in his own world but not in an autistic way, in a sensory

overload/pain/anxiety/hell way. So loss of eye contact - only in the sense that

he's in another place, not that he's more autistic if that makes sense.

Sally - he shuns his weighted blanket. Has to be a live human. Positioned at

just the right angle. Mark is his preference, if I'm lying with him and Mark

appears Tom pushes me away. I think because Mark is bigger, more secure. (or he

hates me. hopefully the former)

>

> Our Tom is doing really well on Piracetam - not confident enough to say

> how this is similar/ different to Prozac but please google.

> (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> Sara x

>

[Guest guest]

yes I get that Steph ...the pain/anxiety/overload etc did that start

before prozac (ie is that why paed got him on it?)? is he verbal enough

or able to pinpoint area of pain do you think, if there was one - say if

it was his head or gut bothering him would he communicate it?

> >

> > Our Tom is doing really well on Piracetam - not confident enough to

say

> > how this is similar/ different to Prozac but please google.

> > (or I can send the stuff Dr Goyal sent us if you dont' find

anything)

> > Sara x

> >

>

[Guest guest]

yes I get that Steph ...the pain/anxiety/overload etc did that start

before prozac (ie is that why paed got him on it?)? is he verbal enough

or able to pinpoint area of pain do you think, if there was one - say if

it was his head or gut bothering him would he communicate it?

> >

> > Our Tom is doing really well on Piracetam - not confident enough to

say

> > how this is similar/ different to Prozac but please google.

> > (or I can send the stuff Dr Goyal sent us if you dont' find

anything)

> > Sara x

> >

>

[Guest guest]

Steph - Sorry to jump in - just wondered - have you tried recently/would he tolerate Wilbarger protocol - brushing every 90mins - 2 hours waking day followed by joint compressions - It can be v. calming and can really help with aggression and sensory stuff - could be something to try at half term? The following demo would be difficult on a constantly moving child. I've never done it like this clip - always just downward strokes on back, arms, legs, and palms, never stomach, face, neck. Joint compressions can be standing press ups against the wall and jumping off a low box. It was really helpful for us. Are you getting help from an OT at the moment? We found Piracetam unhelpful. www.youtube.com/watch?v=t9LSbINc-y0 Subject:

Re: Prozac/ piracetam and NatasaTo: Autism-Biomedical-Europe Date: Sunday, 2 October, 2011, 10:50

Thank you for your thoughts, it really helps.

Sara, that's good to hear! How does it work? I think Paed would try something else in a heart beat. But I don't want to muck about with him, if it's bad for us I can't imagine what it's like for him.

Natasa he is in his own world but not in an autistic way, in a sensory overload/pain/anxiety/hell way. So loss of eye contact - only in the sense that he's in another place, not that he's more autistic if that makes sense.

Sally - he shuns his weighted blanket. Has to be a live human. Positioned at just the right angle. Mark is his preference, if I'm lying with him and Mark appears Tom pushes me away. I think because Mark is bigger, more secure. (or he hates me. hopefully the former)

>

> Our Tom is doing really well on Piracetam - not confident enough to say

> how this is similar/ different to Prozac but please google.

> (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> Sara x

>

[Guest guest]

Steph - Sorry to jump in - just wondered - have you tried recently/would he tolerate Wilbarger protocol - brushing every 90mins - 2 hours waking day followed by joint compressions - It can be v. calming and can really help with aggression and sensory stuff - could be something to try at half term? The following demo would be difficult on a constantly moving child. I've never done it like this clip - always just downward strokes on back, arms, legs, and palms, never stomach, face, neck. Joint compressions can be standing press ups against the wall and jumping off a low box. It was really helpful for us. Are you getting help from an OT at the moment? We found Piracetam unhelpful. www.youtube.com/watch?v=t9LSbINc-y0 Subject:

Re: Prozac/ piracetam and NatasaTo: Autism-Biomedical-Europe Date: Sunday, 2 October, 2011, 10:50

Thank you for your thoughts, it really helps.

Sara, that's good to hear! How does it work? I think Paed would try something else in a heart beat. But I don't want to muck about with him, if it's bad for us I can't imagine what it's like for him.

Natasa he is in his own world but not in an autistic way, in a sensory overload/pain/anxiety/hell way. So loss of eye contact - only in the sense that he's in another place, not that he's more autistic if that makes sense.

Sally - he shuns his weighted blanket. Has to be a live human. Positioned at just the right angle. Mark is his preference, if I'm lying with him and Mark appears Tom pushes me away. I think because Mark is bigger, more secure. (or he hates me. hopefully the former)

>

> Our Tom is doing really well on Piracetam - not confident enough to say

> how this is similar/ different to Prozac but please google.

> (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> Sara x

>

[Guest guest]

,

Have you thought of trying to get him investigated physically on the NHS?

I know you have been abroad and had lots of private investigations in the past,

but maybe he has a new problem.

As you say he is in physical pain then it may be worth trying the GP again, not

mentioning autism, and perhaps try to get standard investigations underway, as

they would for any other child not with a label of autism, but who was showing

the same symptoms. If not helpful,then perhaps it would do no harm to mention

" diagnostic overshadowing " . There is increasing awareness of the risk of a

poorer quality of health care being offered to people with disabilities. IN some

quarters it has been proposed that disabled people should have full health check

up every year. (I know someone who insisted on it for her disabled 19 year old

and testicular cancer was found - and treated. Had he not had the checkup,

no-one would have known.)

Does he have access to a helpful NHS gastroenterologist? I can't remember what

part of the country you are in.

Hope you get to the bottom of this soon and find some effective help for him.

Margaret

> >

> > Our Tom is doing really well on Piracetam - not confident enough to say

> > how this is similar/ different to Prozac but please google.

> > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > Sara x

> >

>

[Guest guest]

,

Have you thought of trying to get him investigated physically on the NHS?

I know you have been abroad and had lots of private investigations in the past,

but maybe he has a new problem.

As you say he is in physical pain then it may be worth trying the GP again, not

mentioning autism, and perhaps try to get standard investigations underway, as

they would for any other child not with a label of autism, but who was showing

the same symptoms. If not helpful,then perhaps it would do no harm to mention

" diagnostic overshadowing " . There is increasing awareness of the risk of a

poorer quality of health care being offered to people with disabilities. IN some

quarters it has been proposed that disabled people should have full health check

up every year. (I know someone who insisted on it for her disabled 19 year old

and testicular cancer was found - and treated. Had he not had the checkup,

no-one would have known.)

Does he have access to a helpful NHS gastroenterologist? I can't remember what

part of the country you are in.

Hope you get to the bottom of this soon and find some effective help for him.

Margaret

> >

> > Our Tom is doing really well on Piracetam - not confident enough to say

> > how this is similar/ different to Prozac but please google.

> > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > Sara x

> >

>

[Guest guest]

PS Personally I would perhaps be thinking on the lines of blood tests, gastro

investigations and abdominal ultrasound (or even MRI?), making sure his vision

and hearing were okay and that his teeth were fine. But as you know, I'm not a

doctor, just a mum.

Margaret

> > >

> > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > how this is similar/ different to Prozac but please google.

> > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > Sara x

> > >

> >

>

[Guest guest]

PS Personally I would perhaps be thinking on the lines of blood tests, gastro

investigations and abdominal ultrasound (or even MRI?), making sure his vision

and hearing were okay and that his teeth were fine. But as you know, I'm not a

doctor, just a mum.

Margaret

> > >

> > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > how this is similar/ different to Prozac but please google.

> > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > Sara x

> > >

> >

>

[Guest guest]

Hi Margaret,

Sorry to butt in on this but i was just wondering about the term you used:

'diagnostic overshadowing' and where you got it from? Is it another way of

telling the NHS officially (ie in terms they understand) that they're not doing

their job properly or what...? Just wondering whether it could be a useful a

term to adopt by those of us whose children are getting sub-optimal care from

the nhs (most on this list i would guess!!!)....

tia, Nikki x

> > >

> > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > how this is similar/ different to Prozac but please google.

> > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > Sara x

> > >

> >

>

[Guest guest]

Hi Margaret,

Sorry to butt in on this but i was just wondering about the term you used:

'diagnostic overshadowing' and where you got it from? Is it another way of

telling the NHS officially (ie in terms they understand) that they're not doing

their job properly or what...? Just wondering whether it could be a useful a

term to adopt by those of us whose children are getting sub-optimal care from

the nhs (most on this list i would guess!!!)....

tia, Nikki x

> > >

> > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > how this is similar/ different to Prozac but please google.

> > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > Sara x

> > >

> >

>

[Guest guest]

It's bit of jargon that has been used in various papers and articles: basically

it means that if you have one label, there's a risk that there will be a

tendency to attribute problems to it.

Here's a useful short extratc from this website

http://www.knowledge.scot.nhs.uk/home/portals-and-topics/learning-disabilities-p\

ortal/topics--glossary/managing-physical-health--well-being/diagnostic-overshado\

wing.aspx

" What do we mean by Diagnostic Overshadowing?

Diagnostic overshadowing is when a person's presenting symptoms are put down to

their learning disability, rather than seeking another potentially treatable

cause.

When a person presents with a new behaviour or existing ones escalate the health

practitioner should consider:

• Physical problems: pain or discomfort, e.g. from ear infection, toothache,

constipation, reflux oesophagitis, deterioration in vision or hearing

• Psychiatric causes: depression, anxiety, psychosis, dementia

• Social causes: change in carers, bereavement, abuse.

Reasonable Adjustments

To enable people with learning disability to fully utilise generic health

services, they may need extra support. Carers, community learning disability

nurses and advocates may all play a role in this. Arranging longer clinic

appointments or preliminary visits to hospitals can give extra time to aid

communication, or reduce fear of the unknown.

Health Assessments

Some community learning disability teams carry out regular health screening and

books are available that use pictures to explain common health problems and

procedures, such as breast screening (`Books Beyond Words' series, Gaskell

Books).

Communication

Because 80% of diagnoses are based on what people tell doctors, diagnostic

overshadowing is most prevalent among those who are unable to communicate

verbally. Health professionals need to be more aware that they may need to

intervene earlier when someone can't communicate verbally, because often by the

time they're diagnosed it's too late. They also need to be more aware of

indications of distress.

" If someone is clawing at their face it's most likely that they're in pain and

has nothing to do with the fact that they have a learning disability, " (

Congdon, Mencap, in Community Care 04/12/2008). "

> > > >

> > > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > > how this is similar/ different to Prozac but please google.

> > > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > > Sara x

> > > >

> > >

> >

>

[Guest guest]

It's bit of jargon that has been used in various papers and articles: basically

it means that if you have one label, there's a risk that there will be a

tendency to attribute problems to it.

Here's a useful short extratc from this website

http://www.knowledge.scot.nhs.uk/home/portals-and-topics/learning-disabilities-p\

ortal/topics--glossary/managing-physical-health--well-being/diagnostic-overshado\

wing.aspx

" What do we mean by Diagnostic Overshadowing?

Diagnostic overshadowing is when a person's presenting symptoms are put down to

their learning disability, rather than seeking another potentially treatable

cause.

When a person presents with a new behaviour or existing ones escalate the health

practitioner should consider:

• Physical problems: pain or discomfort, e.g. from ear infection, toothache,

constipation, reflux oesophagitis, deterioration in vision or hearing

• Psychiatric causes: depression, anxiety, psychosis, dementia

• Social causes: change in carers, bereavement, abuse.

Reasonable Adjustments

To enable people with learning disability to fully utilise generic health

services, they may need extra support. Carers, community learning disability

nurses and advocates may all play a role in this. Arranging longer clinic

appointments or preliminary visits to hospitals can give extra time to aid

communication, or reduce fear of the unknown.

Health Assessments

Some community learning disability teams carry out regular health screening and

books are available that use pictures to explain common health problems and

procedures, such as breast screening (`Books Beyond Words' series, Gaskell

Books).

Communication

Because 80% of diagnoses are based on what people tell doctors, diagnostic

overshadowing is most prevalent among those who are unable to communicate

verbally. Health professionals need to be more aware that they may need to

intervene earlier when someone can't communicate verbally, because often by the

time they're diagnosed it's too late. They also need to be more aware of

indications of distress.

" If someone is clawing at their face it's most likely that they're in pain and

has nothing to do with the fact that they have a learning disability, " (

Congdon, Mencap, in Community Care 04/12/2008). "

> > > >

> > > > Our Tom is doing really well on Piracetam - not confident enough to say

> > > > how this is similar/ different to Prozac but please google.

> > > > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

> > > > Sara x

> > > >

> > >

> >

>

[Guest guest]

sending stuff Steph but google too for more info on how it works. (I

think I know but would probably come out with a load of gobbledygook if

I explained)

Sara x

[Guest guest]

sending stuff Steph but google too for more info on how it works. (I

think I know but would probably come out with a load of gobbledygook if

I explained)

Sara x

[Guest guest]

Thank you for this . He does love joint compressions - sometimes.

other times they make him scream. We've never tried the skin brushing. We're

just seeing our younger (NT?ish) through INPP which is helping his dyspraxia.

I'll take a look at this for Tom and perhaps for Ned too

>

> >

>

> > Our Tom is doing really well on Piracetam - not confident enough to say

>

> > how this is similar/ different to Prozac but please google.

>

> > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

>

> > Sara x

>

> >

>

[Guest guest]

Thank you for this . He does love joint compressions - sometimes.

other times they make him scream. We've never tried the skin brushing. We're

just seeing our younger (NT?ish) through INPP which is helping his dyspraxia.

I'll take a look at this for Tom and perhaps for Ned too

>

> >

>

> > Our Tom is doing really well on Piracetam - not confident enough to say

>

> > how this is similar/ different to Prozac but please google.

>

> > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

>

> > Sara x

>

> >

>

[Guest guest]

Thank you for this . He does love joint compressions - sometimes.

other times they make him scream. We've never tried the skin brushing. We're

just seeing our younger (NT?ish) through INPP which is helping his dyspraxia.

I'll take a look at this for Tom and perhaps for Ned too

>

> >

>

> > Our Tom is doing really well on Piracetam - not confident enough to say

>

> > how this is similar/ different to Prozac but please google.

>

> > (or I can send the stuff Dr Goyal sent us if you dont' find anything)

>

> > Sara x

>

> >

>