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Re: Henry Update

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That is great news! I bet you're totally excited to get things

underway and get some answers & opinions.

If you would like a good list of questions to ask the dr. go to

www.plagiocephaly.org/support the " questions for the Dr " ...this

might help at your appt.

Let us know how it goes.

Debbie Abby'smom DOCGrad

MI

> Hi Everyone!

>

> Good News, the ped's office faxed the referral to Geisinger

Hospital

> on Tuesday, and we have made our appointment for Friday, August

9th!

> Thankfully, she did not need to see Henry before she would give us

a

> referral. For all their faults, they are certainly plagio

friendly.

> I am a little anxious about going to the neurologist, only because

we

> don't know these doctors, and know of people with bad experiences

at

> this hospital. So, we will see. Gotta run, Henry's hungry AGAIN!

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Good luck at your appointment next Friday, it'll be here before you

know it! Be sure to let us know how it goes!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi Everyone!

>

> Good News, the ped's office faxed the referral to Geisinger

Hospital

> on Tuesday, and we have made our appointment for Friday, August

9th!

> Thankfully, she did not need to see Henry before she would give us

a

> referral. For all their faults, they are certainly plagio

friendly.

> I am a little anxious about going to the neurologist, only because

we

> don't know these doctors, and know of people with bad experiences

at

> this hospital. So, we will see. Gotta run, Henry's hungry AGAIN!

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  • 3 years later...
Guest guest

Margaret what reports are you having done?

Are they saying he is more LD than Autism?

's dx from Nottingham Early Yrs said his LD's were severe and over and above his autism, yet he is definitely progressing, I haven't given up the hope that with less autism I will also see better cognitive thinking and lifting of the fogginess.

Vicky

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Margaret what reports are you having done?

Are they saying he is more LD than Autism?

's dx from Nottingham Early Yrs said his LD's were severe and over and above his autism, yet he is definitely progressing, I haven't given up the hope that with less autism I will also see better cognitive thinking and lifting of the fogginess.

Vicky

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Hi Margaret.

I have no idea of your situation, but I refuse to believe in " autistic

mental retardation " . It may be that I am in denial, but my core belief

is in pathogen damage that hopefully is reversible.

Miles.

Margaret wrote:

> We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So while

> it is worth going down the biomed route to help him, there will be no

> cure, but I have known that for years anyway. They are all saying he

> is very high need and we may need to think of boarding school along

> the line. (we don't want this.) I am posting this just to share the

> information in case it helps others whose child's autism is also

> linked to some other problem - we all know all our children are

> different, but it's only human to hope that what works for one child

> will work for another. Anyone know any cures for mental retardation?

> - perhaps some day...

> margaret

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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Hi Margaret.

I have no idea of your situation, but I refuse to believe in " autistic

mental retardation " . It may be that I am in denial, but my core belief

is in pathogen damage that hopefully is reversible.

Miles.

Margaret wrote:

> We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So while

> it is worth going down the biomed route to help him, there will be no

> cure, but I have known that for years anyway. They are all saying he

> is very high need and we may need to think of boarding school along

> the line. (we don't want this.) I am posting this just to share the

> information in case it helps others whose child's autism is also

> linked to some other problem - we all know all our children are

> different, but it's only human to hope that what works for one child

> will work for another. Anyone know any cures for mental retardation?

> - perhaps some day...

> margaret

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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What does mental retardation mean, Margaret? Does it mean brain damage? Sara

Re: Henry update

Hi Margaret.

I have no idea of your situation, but I refuse to believe in " autistic

mental retardation " . It may be that I am in denial, but my core belief

is in pathogen damage that hopefully is reversible.

Miles.

Margaret wrote:

> We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So while

> it is worth going down the biomed route to help him, there will be no

> cure, but I have known that for years anyway. They are all saying he

> is very high need and we may need to think of boarding school along

> the line. (we don't want this.) I am posting this just to share the

> information in case it helps others whose child's autism is also

> linked to some other problem - we all know all our children are

> different, but it's only human to hope that what works for one child

> will work for another. Anyone know any cures for mental retardation?

> - perhaps some day...

> margaret

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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What does mental retardation mean, Margaret? Does it mean brain damage? Sara

Re: Henry update

Hi Margaret.

I have no idea of your situation, but I refuse to believe in " autistic

mental retardation " . It may be that I am in denial, but my core belief

is in pathogen damage that hopefully is reversible.

Miles.

Margaret wrote:

> We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So while

> it is worth going down the biomed route to help him, there will be no

> cure, but I have known that for years anyway. They are all saying he

> is very high need and we may need to think of boarding school along

> the line. (we don't want this.) I am posting this just to share the

> information in case it helps others whose child's autism is also

> linked to some other problem - we all know all our children are

> different, but it's only human to hope that what works for one child

> will work for another. Anyone know any cures for mental retardation?

> - perhaps some day...

> margaret

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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In a message dated 19/05/2006 09:05:53 GMT Daylight Time, m.collins9@... writes:

Basically it's a medical label and it refers to low IQ - not in itself much use. very low IQ can be caused by genetic conditions, structural brain abnormalities etc

>>>and of course the stupid testing that they do - Sam comes out minus 10 on an IQ test but he is smart for sure

Mandi x

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In a message dated 19/05/2006 09:05:53 GMT Daylight Time, m.collins9@... writes:

Basically it's a medical label and it refers to low IQ - not in itself much use. very low IQ can be caused by genetic conditions, structural brain abnormalities etc

>>>and of course the stupid testing that they do - Sam comes out minus 10 on an IQ test but he is smart for sure

Mandi x

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In a message dated 19/05/2006 09:05:54 GMT Standard Time, m.collins9@... writes:

On the plus side, H is disposed to happiness and has made enormous improvements from where he was, but he is still from an objective point of view very very damaged and very high need.

Dear Margaret

I wish I had something fabulously comforting, impressive or useful to say to you but I dont... I just wanted to say that I am thinking of you and we all know that our hearts have been broken to some extent by autism... If Henry has happiness thats wonderful cos really at the end of the day thats what we all aspire to. And as others have said if he has made improvemnts we really dont know how far he can go, I know you will always hope and do what you can to further that improvemnet.

He has a fabulous mum who is looking out for him and loving him deeply and thats another thing that too few kids in our world experience too.

Better go but wisjing you hugs and love and good things for both of you cos that can still happen even through the tears, its just changing the way we think sometimes.

Lotsa Love Caroline

xxx

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On 18/5/06 23:08, " Margaret " <m.collins9@...> wrote:

We are seeing independent professsionals and getting reports for Tribunal. It is bringing home how very damaged he is, and that a lot of this can probably be laid at the door of the Infantile Spasms he had in infancy. They cause brain damage and lead to autism in a very high percentage of cases, also to severe mental retardation. So while it is worth going down the biomed route to help him, there will be no cure, but I have known that for years anyway. They are all saying he is very high need and we may need to think of boarding school along the line. (we don't want this.) I am posting this just to share the information in case it helps others whose child's autism is also linked to some other problem - we all know all our children are different, but it's only human to hope that what works for one child will work for another. Anyone know any cures for mental retardation? - perhaps some day...

margaret

DISCLAIMER

No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

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On 18/5/06 23:08, " Margaret " <m.collins9@...> wrote:

We are seeing independent professsionals and getting reports for Tribunal. It is bringing home how very damaged he is, and that a lot of this can probably be laid at the door of the Infantile Spasms he had in infancy. They cause brain damage and lead to autism in a very high percentage of cases, also to severe mental retardation. So while it is worth going down the biomed route to help him, there will be no cure, but I have known that for years anyway. They are all saying he is very high need and we may need to think of boarding school along the line. (we don't want this.) I am posting this just to share the information in case it helps others whose child's autism is also linked to some other problem - we all know all our children are different, but it's only human to hope that what works for one child will work for another. Anyone know any cures for mental retardation? - perhaps some day...

margaret

DISCLAIMER

No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

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I don't want to sound trite but you just never know what the brain

is capable of. My friends son had his brain scanned - and it was

smooth! That was when he was two. Clearly he was going to be a

vegetable, it was incredibly upsetting for everyone. Nine years

later he is verbal, friendly, intelligent, has friends. He's in

special education but he's great company and nothing like the child

that medicine told us he SHOULD be. I have no idea for TOm -

somedays I think he's a normal little boy with autism and others I

think " wow, that was a deeply dim thing to do TOm " and that he must

be very retarded. I do really believe that it's hard to learn

anything when your system is fighting off or dealing with other

stuff. And that retardation can't be accurately measured if you're

effectively living in a bubble of toxins or even in pain. I'm not

suggesting that you shouldn't be realistic or delude yourself that

everything will be ok. Just that titles like retarded or low

functioning can be lost - we've all known children like that.

Steph xx

>

> We are seeing independent professsionals and getting reports for

Tribunal. It is bringing home how very damaged he is, and that a lot

of this can probably be laid at the door of the Infantile Spasms he

had in infancy. They cause brain damage and lead to autism in a very

high percentage of cases, also to severe mental retardation. So

while it is worth going down the biomed route to help him, there

will be no cure, but I have known that for years anyway. They are

all saying he is very high need and we may need to think of boarding

school along the line. (we don't want this.) I am posting this just

to share the information in case it helps others whose child's

autism is also linked to some other problem - we all know all our

children are different, but it's only human to hope that what works

for one child will work for another. Anyone know any cures for

mental retardation? - perhaps some day...

> margaret

>

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I don't want to sound trite but you just never know what the brain

is capable of. My friends son had his brain scanned - and it was

smooth! That was when he was two. Clearly he was going to be a

vegetable, it was incredibly upsetting for everyone. Nine years

later he is verbal, friendly, intelligent, has friends. He's in

special education but he's great company and nothing like the child

that medicine told us he SHOULD be. I have no idea for TOm -

somedays I think he's a normal little boy with autism and others I

think " wow, that was a deeply dim thing to do TOm " and that he must

be very retarded. I do really believe that it's hard to learn

anything when your system is fighting off or dealing with other

stuff. And that retardation can't be accurately measured if you're

effectively living in a bubble of toxins or even in pain. I'm not

suggesting that you shouldn't be realistic or delude yourself that

everything will be ok. Just that titles like retarded or low

functioning can be lost - we've all known children like that.

Steph xx

>

> We are seeing independent professsionals and getting reports for

Tribunal. It is bringing home how very damaged he is, and that a lot

of this can probably be laid at the door of the Infantile Spasms he

had in infancy. They cause brain damage and lead to autism in a very

high percentage of cases, also to severe mental retardation. So

while it is worth going down the biomed route to help him, there

will be no cure, but I have known that for years anyway. They are

all saying he is very high need and we may need to think of boarding

school along the line. (we don't want this.) I am posting this just

to share the information in case it helps others whose child's

autism is also linked to some other problem - we all know all our

children are different, but it's only human to hope that what works

for one child will work for another. Anyone know any cures for

mental retardation? - perhaps some day...

> margaret

>

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Basically it's a medical label and it refers to low IQ - not in itself much use. very low IQ can be caused by genetic conditions, structural brain abnormalities etc. I suppose I've had years and years now of seeing my son with other children with autism of his own age and there's always been the clutch at my stomach when I see that he always appears to be the least intelligent child there, by far. I would rather it wasn't like that, but it is. very likely he was damaged by the whooping cough vaccine. The Dr we saw yesterday says he's seen many children over the years with a similar pattern of difficulties that the parents have suspected were caused by the whooping cough vaccine. The Infantile Spasms (IS) which follwed themselves cause brain damage and are accompanied by a grossly disordered EEG - it was described as "scrambled egg" on one list. Cortical dysplasia is commonly found on brain imaging with IS ie structural anomalies in the brain. IS is not called "catastrophic" and "malignant" for nothing

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Basically it's a medical label and it refers to low IQ - not in itself much use. very low IQ can be caused by genetic conditions, structural brain abnormalities etc. I suppose I've had years and years now of seeing my son with other children with autism of his own age and there's always been the clutch at my stomach when I see that he always appears to be the least intelligent child there, by far. I would rather it wasn't like that, but it is. very likely he was damaged by the whooping cough vaccine. The Dr we saw yesterday says he's seen many children over the years with a similar pattern of difficulties that the parents have suspected were caused by the whooping cough vaccine. The Infantile Spasms (IS) which follwed themselves cause brain damage and are accompanied by a grossly disordered EEG - it was described as "scrambled egg" on one list. Cortical dysplasia is commonly found on brain imaging with IS ie structural anomalies in the brain. IS is not called "catastrophic" and "malignant" for nothing

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In a message dated 19/05/2006 09:23:56 GMT Standard Time, m.collins9@... writes:

How many of the normal population are "spending daily life with joy?"!

Margaret

Exactly honey just you keep doing what you are doing, its obviously right for your little one.

Lotsa Love Caroline

xxx

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In a message dated 19/05/2006 09:23:56 GMT Standard Time, m.collins9@... writes:

How many of the normal population are "spending daily life with joy?"!

Margaret

Exactly honey just you keep doing what you are doing, its obviously right for your little one.

Lotsa Love Caroline

xxx

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Caroline, there's a charming abstract via pub-med, written by Japanese researchers:

"Long-term social prognosis of 120 Japanese patients with West syndrome was surveyed using structured questionnaire at the age of 25.4 years in average. The survey revealed that ADL score remained null in one-fifth of cases; the majority entered in special education course for disabled children; only eleven cases were employed as a full-time worker. As to QOL, 60% of cases were spending daily life with joy. In summary, social prognosis of West syndrome is generally gloomy, but a proportion of patients can lead an independent social life, and an enriched social environment is the most influential factor for better prognosis"

How many of the normal population are "spending daily life with joy?"!

Margaret

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I second that and would like to add that you might want to look at hbot,

if you have not already. It is known to help with brain damage due to

lack of oxygen, don't know about mechanisms behind infantile spasms but

something worth considering.

Natasa

> >

> > We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So

> while it is worth going down the biomed route to help him, there

> will be no cure, but I have known that for years anyway. They are

> all saying he is very high need and we may need to think of boarding

> school along the line. (we don't want this.) I am posting this just

> to share the information in case it helps others whose child's

> autism is also linked to some other problem - we all know all our

> children are different, but it's only human to hope that what works

> for one child will work for another. Anyone know any cures for

> mental retardation? - perhaps some day...

> > margaret

> >

>

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I second that and would like to add that you might want to look at hbot,

if you have not already. It is known to help with brain damage due to

lack of oxygen, don't know about mechanisms behind infantile spasms but

something worth considering.

Natasa

> >

> > We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So

> while it is worth going down the biomed route to help him, there

> will be no cure, but I have known that for years anyway. They are

> all saying he is very high need and we may need to think of boarding

> school along the line. (we don't want this.) I am posting this just

> to share the information in case it helps others whose child's

> autism is also linked to some other problem - we all know all our

> children are different, but it's only human to hope that what works

> for one child will work for another. Anyone know any cures for

> mental retardation? - perhaps some day...

> > margaret

> >

>

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Hi Margaret

Just to let you know that you are not alone. My son Archie (aged 7) is

bottom of an SLD class. It has made me change the way I approach things

a bit over the years (can't fix something that is too damaged), and the

results from any intervention has to be worth the effort for us all now

(I suppose that's always been true, but some things are just too

difficult to continue for such limited improvements, and I'm not

seeking recovery anymore). What has made a huge difference to us is

Archie's school (PMLD/SLD). He moved there a year and a half ago, it is

absolutely perfect for him - as soon as he started there I kept being

told how much better I looked, and how I'd looked really ill before

(!!). I'm new here so I don't know your history, or what you are hoping

to get from tribunal, but just to say it really is worth going for the

right educational placement for your child. Having Archie at the right

school has made life a lot easier for the whole family. So although the

tribunal stuff must be hideous, it's definitely worth doing, and I have

all my fingers and toes crossed for you. They\re very good with the

diet and everything as well.

xx

On 19 May 2006, at 07:20, Sirr wrote:

> I don't want to sound trite but you just never know what the brain

> is capable of.  My friends son had his brain scanned - and it was

> smooth!  That was when he was two.  Clearly he was going to be a

> vegetable, it was incredibly upsetting for everyone.  Nine years

> later he is verbal, friendly, intelligent, has friends. He's in

> special education but he's great company and nothing like the child

> that medicine told us he SHOULD be. I have no idea for TOm -

> somedays I think he's a normal little boy with autism and others I

> think " wow, that was a deeply dim thing to do TOm " and that he must

> be very retarded. I do really believe that it's hard to learn

> anything when your system is fighting off or dealing with other

> stuff.  And that retardation can't be accurately measured if you're

> effectively living in a bubble of toxins or even in pain. I'm not

> suggesting that you shouldn't be realistic or delude yourself that

> everything will be ok.  Just that titles like retarded or low

> functioning can be lost - we've all known children like that.

>

> Steph xx

>

>

> >

> > We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So

> while it is worth going down the biomed route to help him, there

> will be no cure, but I have known that for years anyway. They are

> all saying he is very high need and we may need to think of boarding

> school along the line. (we don't want this.) I am posting this just

> to share the information in case it helps others whose child's

> autism is also linked to some other problem - we all know all our

> children are different, but it's only human to hope that what works

> for one child will work for another.  Anyone know any cures for

> mental retardation? - perhaps some day...

> > margaret

> >

>

>

>

>

>

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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Hi Margaret

Just to let you know that you are not alone. My son Archie (aged 7) is

bottom of an SLD class. It has made me change the way I approach things

a bit over the years (can't fix something that is too damaged), and the

results from any intervention has to be worth the effort for us all now

(I suppose that's always been true, but some things are just too

difficult to continue for such limited improvements, and I'm not

seeking recovery anymore). What has made a huge difference to us is

Archie's school (PMLD/SLD). He moved there a year and a half ago, it is

absolutely perfect for him - as soon as he started there I kept being

told how much better I looked, and how I'd looked really ill before

(!!). I'm new here so I don't know your history, or what you are hoping

to get from tribunal, but just to say it really is worth going for the

right educational placement for your child. Having Archie at the right

school has made life a lot easier for the whole family. So although the

tribunal stuff must be hideous, it's definitely worth doing, and I have

all my fingers and toes crossed for you. They\re very good with the

diet and everything as well.

xx

On 19 May 2006, at 07:20, Sirr wrote:

> I don't want to sound trite but you just never know what the brain

> is capable of.  My friends son had his brain scanned - and it was

> smooth!  That was when he was two.  Clearly he was going to be a

> vegetable, it was incredibly upsetting for everyone.  Nine years

> later he is verbal, friendly, intelligent, has friends. He's in

> special education but he's great company and nothing like the child

> that medicine told us he SHOULD be. I have no idea for TOm -

> somedays I think he's a normal little boy with autism and others I

> think " wow, that was a deeply dim thing to do TOm " and that he must

> be very retarded. I do really believe that it's hard to learn

> anything when your system is fighting off or dealing with other

> stuff.  And that retardation can't be accurately measured if you're

> effectively living in a bubble of toxins or even in pain. I'm not

> suggesting that you shouldn't be realistic or delude yourself that

> everything will be ok.  Just that titles like retarded or low

> functioning can be lost - we've all known children like that.

>

> Steph xx

>

>

> >

> > We are seeing independent professsionals and getting reports for

> Tribunal. It is bringing home how very damaged he is, and that a lot

> of this can probably be laid at the door of the Infantile Spasms he

> had in infancy. They cause brain damage and lead to autism in a very

> high percentage of cases, also to severe mental retardation. So

> while it is worth going down the biomed route to help him, there

> will be no cure, but I have known that for years anyway. They are

> all saying he is very high need and we may need to think of boarding

> school along the line. (we don't want this.) I am posting this just

> to share the information in case it helps others whose child's

> autism is also linked to some other problem - we all know all our

> children are different, but it's only human to hope that what works

> for one child will work for another.  Anyone know any cures for

> mental retardation? - perhaps some day...

> > margaret

> >

>

>

>

>

>

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

>

>

>

>

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SALT, Ed Psych, Paediatric Psychiatrist and OT.

No-one's ever teased out the comparative effect of the learning difficulties and the autism - the Psychiatrist said he'd benefit from a very structured intensive programme in any event.

margaret

Re: Henry update

Margaret what reports are you having done?

Are they saying he is more LD than Autism?

's dx from Nottingham Early Yrs said his LD's were severe and over and above his autism, yet he is definitely progressing, I haven't given up the hope that with less autism I will also see better cognitive thinking and lifting of the fogginess.

Vicky__________ NOD32 1.1547 (20060518) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

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