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]

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]

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]

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?

> 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]

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?

> 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]

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?

> 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]

Almost half of autistic children have enlarged VR spaces, but for now,

the origin and significance of this is still unknown. I doubt if a

second opinion would be of much help.

> 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]

thanks, I'd appreciate it.

Sue

>

> > 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?