Re: URGENT! Question about recent MRI

[Guest guest]

I have never heard of that! What are they going to do next? Have

there been any studies on the other autistic children that they've

seen this with? Maybe it's a sub-set of autism, or maybe it should

be a different dx all together???

I can understand how scary that would be to learn! But hopefully

she'll be fine, or at least not getting any worse...

Let us know if you find out anything else!

Amnesty

> Recently my granddaughter had an MRI of the head. The finding was

as

> follows, in a very simplified format, which is the way it was

explained to

> us:

>

> " The center of her brain is empty, except for fluid. "

>

> The Dr. who read the MRI and who called the ordering DAN Dr. told

him he had

> never seen anything like this before. The MRI was done at a large,

hospital

> in Suffolk County NY, Stonybrook. They see a large number of

people and have

> quite a few " out of the ordinary " conditions referred to them.

>

> We are all very concerned about this, to put it mildly. Was this

present

> from birth or did it develop later? Will the space remain the same

or will

> it change? Is the fluid spinal fluid or something else? None of us

have

> slept very well since we first got the news.

>

> The ordering DAN Dr. brought the CD with the images on them along

with the

> report, to the recent DAN conference in Boston. He told us he was

unable to

> find anyone who had seen this before.

>

> This Friday, he met with several Drs from Columbia Presbyterian

Hospital in

> NY. They said they have seen this before in autistic children, and

that was

> about all that was said.

>

> I am asking if anyone has heard of this before and if so, what

information

> you might have about this. Also if you have not heard of this, but

think you

> know someone who has, please pass along my email and ask them to

reply to me

> privately @

>

> mailto:jn516@o...

>

> Thank you in advance.

>

> June Guerin-Najdek

> mailto:jn516@o...

[Guest guest]

Amnesty,

unfortunately right now I don't have any answers. I will be sure to

keep the list updated.

I also wonder if there have been studies on other autistic children

and if it might be a sub-set of autism?

> > Recently my granddaughter had an MRI of the head. The finding

was

> as

> > follows, in a very simplified format, which is the way it was

> explained to

> > us:

> >

> > " The center of her brain is empty, except for fluid. "

> >

> > The Dr. who read the MRI and who called the ordering DAN Dr.

told

> him he had

> > never seen anything like this before. The MRI was done at a

large,

> hospital

> > in Suffolk County NY, Stonybrook. They see a large number of

> people and have

> > quite a few " out of the ordinary " conditions referred to them.

> >

> > We are all very concerned about this, to put it mildly. Was this

> present

> > from birth or did it develop later? Will the space remain the

same

> or will

> > it change? Is the fluid spinal fluid or something else? None of

us

> have

> > slept very well since we first got the news.

> >

> > The ordering DAN Dr. brought the CD with the images on them

along

> with the

> > report, to the recent DAN conference in Boston. He told us he

was

> unable to

> > find anyone who had seen this before.

> >

> > This Friday, he met with several Drs from Columbia Presbyterian

> Hospital in

> > NY. They said they have seen this before in autistic children,

and

> that was

> > about all that was said.

> >

> > I am asking if anyone has heard of this before and if so, what

> information

> > you might have about this. Also if you have not heard of this,

but

> think you

> > know someone who has, please pass along my email and ask them to

> reply to me

> > privately @

> >

> > mailto:jn516@o...

> >

> > Thank you in advance.

> >

> > June Guerin-Najdek

> > mailto:jn516@o...

[Guest guest]

Amnesty,

unfortunately right now I don't have any answers. I will be sure to

keep the list updated.

I also wonder if there have been studies on other autistic children

and if it might be a sub-set of autism?

> > Recently my granddaughter had an MRI of the head. The finding

was

> as

> > follows, in a very simplified format, which is the way it was

> explained to

> > us:

> >

> > " The center of her brain is empty, except for fluid. "

> >

> > The Dr. who read the MRI and who called the ordering DAN Dr.

told

> him he had

> > never seen anything like this before. The MRI was done at a

large,

> hospital

> > in Suffolk County NY, Stonybrook. They see a large number of

> people and have

> > quite a few " out of the ordinary " conditions referred to them.

> >

> > We are all very concerned about this, to put it mildly. Was this

> present

> > from birth or did it develop later? Will the space remain the

same

> or will

> > it change? Is the fluid spinal fluid or something else? None of

us

> have

> > slept very well since we first got the news.

> >

> > The ordering DAN Dr. brought the CD with the images on them

along

> with the

> > report, to the recent DAN conference in Boston. He told us he

was

> unable to

> > find anyone who had seen this before.

> >

> > This Friday, he met with several Drs from Columbia Presbyterian

> Hospital in

> > NY. They said they have seen this before in autistic children,

and

> that was

> > about all that was said.

> >

> > I am asking if anyone has heard of this before and if so, what

> information

> > you might have about this. Also if you have not heard of this,

but

> think you

> > know someone who has, please pass along my email and ask them to

> reply to me

> > privately @

> >

> > mailto:jn516@o...

> >

> > Thank you in advance.

> >

> > June Guerin-Najdek

> > mailto:jn516@o...

[Guest guest]

Amnesty,

unfortunately right now I don't have any answers. I will be sure to

keep the list updated.

I also wonder if there have been studies on other autistic children

and if it might be a sub-set of autism?

> > Recently my granddaughter had an MRI of the head. The finding

was

> as

> > follows, in a very simplified format, which is the way it was

> explained to

> > us:

> >

> > " The center of her brain is empty, except for fluid. "

> >

> > The Dr. who read the MRI and who called the ordering DAN Dr.

told

> him he had

> > never seen anything like this before. The MRI was done at a

large,

> hospital

> > in Suffolk County NY, Stonybrook. They see a large number of

> people and have

> > quite a few " out of the ordinary " conditions referred to them.

> >

> > We are all very concerned about this, to put it mildly. Was this

> present

> > from birth or did it develop later? Will the space remain the

same

> or will

> > it change? Is the fluid spinal fluid or something else? None of

us

> have

> > slept very well since we first got the news.

> >

> > The ordering DAN Dr. brought the CD with the images on them

along

> with the

> > report, to the recent DAN conference in Boston. He told us he

was

> unable to

> > find anyone who had seen this before.

> >

> > This Friday, he met with several Drs from Columbia Presbyterian

> Hospital in

> > NY. They said they have seen this before in autistic children,

and

> that was

> > about all that was said.

> >

> > I am asking if anyone has heard of this before and if so, what

> information

> > you might have about this. Also if you have not heard of this,

but

> think you

> > know someone who has, please pass along my email and ask them to

> reply to me

> > privately @

> >

> > mailto:jn516@o...

> >

> > Thank you in advance.

> >

> > June Guerin-Najdek

> > mailto:jn516@o...

[Guest guest]

I have not heard of this but please, please keep us posted on your findings.

You are in our thoughts.

URGENT! Question about recent MRI

Recently my granddaughter had an MRI of the head. The finding was as

follows, in a very simplified format, which is the way it was explained to

us:

" The center of her brain is empty, except for fluid. "

The Dr. who read the MRI and who called the ordering DAN Dr. told him he had

never seen anything like this before. The MRI was done at a large, hospital

in Suffolk County NY, Stonybrook. They see a large number of people and have

quite a few " out of the ordinary " conditions referred to them.

We are all very concerned about this, to put it mildly. Was this present

from birth or did it develop later? Will the space remain the same or will

it change? Is the fluid spinal fluid or something else? None of us have

slept very well since we first got the news.

The ordering DAN Dr. brought the CD with the images on them along with the

report, to the recent DAN conference in Boston. He told us he was unable to

find anyone who had seen this before.

This Friday, he met with several Drs from Columbia Presbyterian Hospital in

NY. They said they have seen this before in autistic children, and that was

about all that was said.

I am asking if anyone has heard of this before and if so, what information

you might have about this. Also if you have not heard of this, but think you

know someone who has, please pass along my email and ask them to reply to me

privately @

mailto:jn516@...

Thank you in advance.

June Guerin-Najdek

mailto:jn516@...

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

------------------------------------------------------------------------------

[Guest guest]

June,

I realize they were trying to simplify things for you, but " the center

of her brain " has a lot of structures in it. Did they tell you what

was missing and what was still there? I know of children who have been

born without a corpus callosum or septum pellucidum, which separate the

two sides of the brain.

[Guest guest]

Hi ,

thanks so much for your caring and concern. I will definitely keep

you and the list posted.

> I have not heard of this but please, please keep us posted on your

findings. You are in our thoughts.

> URGENT! Question about recent MRI

>

>

> Recently my granddaughter had an MRI of the head. The finding

was as

> follows, in a very simplified format, which is the way it was

explained to

> us:

>

> " The center of her brain is empty, except for fluid. "

>

> The Dr. who read the MRI and who called the ordering DAN Dr.

told him he had

> never seen anything like this before. The MRI was done at a

large, hospital

> in Suffolk County NY, Stonybrook. They see a large number of

people and have

> quite a few " out of the ordinary " conditions referred to them.

>

> We are all very concerned about this, to put it mildly. Was this

present

> from birth or did it develop later? Will the space remain the

same or will

> it change? Is the fluid spinal fluid or something else? None of

us have

> slept very well since we first got the news.

>

> The ordering DAN Dr. brought the CD with the images on them

along with the

> report, to the recent DAN conference in Boston. He told us he

was unable to

> find anyone who had seen this before.

>

> This Friday, he met with several Drs from Columbia Presbyterian

Hospital in

> NY. They said they have seen this before in autistic children,

and that was

> about all that was said.

>

> I am asking if anyone has heard of this before and if so, what

information

> you might have about this. Also if you have not heard of this,

but think you

> know someone who has, please pass along my email and ask them to

reply to me

> privately @

>

> mailto:jn516@o...

>

> Thank you in advance.

>

> June Guerin-Najdek

> mailto:jn516@o...

>

>

>

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Hi ,

thanks so much for your caring and concern. I will definitely keep

you and the list posted.

> I have not heard of this but please, please keep us posted on your

findings. You are in our thoughts.

> URGENT! Question about recent MRI

>

>

> Recently my granddaughter had an MRI of the head. The finding

was as

> follows, in a very simplified format, which is the way it was

explained to

> us:

>

> " The center of her brain is empty, except for fluid. "

>

> The Dr. who read the MRI and who called the ordering DAN Dr.

told him he had

> never seen anything like this before. The MRI was done at a

large, hospital

> in Suffolk County NY, Stonybrook. They see a large number of

people and have

> quite a few " out of the ordinary " conditions referred to them.

>

> We are all very concerned about this, to put it mildly. Was this

present

> from birth or did it develop later? Will the space remain the

same or will

> it change? Is the fluid spinal fluid or something else? None of

us have

> slept very well since we first got the news.

>

> The ordering DAN Dr. brought the CD with the images on them

along with the

> report, to the recent DAN conference in Boston. He told us he

was unable to

> find anyone who had seen this before.

>

> This Friday, he met with several Drs from Columbia Presbyterian

Hospital in

> NY. They said they have seen this before in autistic children,

and that was

> about all that was said.

>

> I am asking if anyone has heard of this before and if so, what

information

> you might have about this. Also if you have not heard of this,

but think you

> know someone who has, please pass along my email and ask them to

reply to me

> privately @

>

> mailto:jn516@o...

>

> Thank you in advance.

>

> June Guerin-Najdek

> mailto:jn516@o...

>

>

>

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

I havent heard of fluid there...but i have a 15 year old autistic cousin ( not

blood related) who had an mri and they said it was " dark " in the middle...what

that means i am not sure. my 20 month old daughter hasent had an mri

yet...please keep us posted and stay strong!

aimee

mom2ella

June Najdek wrote:

Recently my granddaughter had an MRI of the head. The finding was as

follows, in a very simplified format, which is the way it was explained to

us:

" The center of her brain is empty, except for fluid. "

The Dr. who read the MRI and who called the ordering DAN Dr. told him he had

never seen anything like this before. The MRI was done at a large, hospital

in Suffolk County NY, Stonybrook. They see a large number of people and have

quite a few " out of the ordinary " conditions referred to them.

We are all very concerned about this, to put it mildly. Was this present

from birth or did it develop later? Will the space remain the same or will

it change? Is the fluid spinal fluid or something else? None of us have

slept very well since we first got the news.

The ordering DAN Dr. brought the CD with the images on them along with the

report, to the recent DAN conference in Boston. He told us he was unable to

find anyone who had seen this before.

This Friday, he met with several Drs from Columbia Presbyterian Hospital in

NY. They said they have seen this before in autistic children, and that was

about all that was said.

I am asking if anyone has heard of this before and if so, what information

you might have about this. Also if you have not heard of this, but think you

know someone who has, please pass along my email and ask them to reply to me

privately @

mailto:jn516@...

Thank you in advance.

June Guerin-Najdek

mailto:jn516@...

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

---------------------------------

[Guest guest]

I havent heard of fluid there...but i have a 15 year old autistic cousin ( not

blood related) who had an mri and they said it was " dark " in the middle...what

that means i am not sure. my 20 month old daughter hasent had an mri

yet...please keep us posted and stay strong!

aimee

mom2ella

June Najdek wrote:

Recently my granddaughter had an MRI of the head. The finding was as

follows, in a very simplified format, which is the way it was explained to

us:

" The center of her brain is empty, except for fluid. "

The Dr. who read the MRI and who called the ordering DAN Dr. told him he had

never seen anything like this before. The MRI was done at a large, hospital

in Suffolk County NY, Stonybrook. They see a large number of people and have

quite a few " out of the ordinary " conditions referred to them.

We are all very concerned about this, to put it mildly. Was this present

from birth or did it develop later? Will the space remain the same or will

it change? Is the fluid spinal fluid or something else? None of us have

slept very well since we first got the news.

The ordering DAN Dr. brought the CD with the images on them along with the

report, to the recent DAN conference in Boston. He told us he was unable to

find anyone who had seen this before.

This Friday, he met with several Drs from Columbia Presbyterian Hospital in

NY. They said they have seen this before in autistic children, and that was

about all that was said.

I am asking if anyone has heard of this before and if so, what information

you might have about this. Also if you have not heard of this, but think you

know someone who has, please pass along my email and ask them to reply to me

privately @

mailto:jn516@...

Thank you in advance.

June Guerin-Najdek

mailto:jn516@...

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

---------------------------------

[Guest guest]

I always wondered if the excess fluid in these spaces was somehow

blocking portions of the brain from normal development or synapse

connections, seems if so many kids with autism have it - it must

mean something, and research going into it that you know of?

>

> > There is a part of the brain called the Virchow-Robin spaces,

that is

> > filled with fluid. When my daughter had her last MRI one of the

> > findings was enlarged Virchow Robin spaces, which to me

ttranslates

> > into more fluid. How old is your grandaughter? they called

's

> > findings " non specific " - which of course meant they had no idea

what

> > it meant. Second opinion time?

[Guest guest]

None that I know of currently but I'll see what I can come up with.

> I always wondered if the excess fluid in these spaces was somehow

> blocking portions of the brain from normal development or synapse

> connections, seems if so many kids with autism have it - it must

> mean something, and research going into it that you know of?