Re: I updated matthew's web site.

[Guest guest]

Any medical professional that works with children with disabilities still

use the " retarded " word should be shot. I would find a Dr. with more

compassion first of all, and second of all, Carly has had seven surgeries and

has

never had a problem. One surgery was and eye surgery.

Christy (mom to Carly 2 year old. PMG, Nissenx3, g-tube, Duanes syndrome

type II, COPD- but a smile that lights my life and cheeks that make me feel

like

I am the luckiest mom in the world)

[Guest guest]

Charlotte,

That is crazy!!!! And I would not continue to see a Dr. who soo mildly put

it.... retarded. He needs a better bed side manner! na had strabismus

surgery when she was 1 and a g tube placement. What kind of surgery are you

needing? All I can say is it is better to be safe than sorry but I am sure you

have read a lot of children on this site end up with one kind of surgery or

another. Good luck and I will keep you in my prayers.

Kristie

wendy hansen wrote:

hi , i came from the doctor today and was told that in order for my son to have

eye surgury that he would have to have more test so that we know for sure that

Poly microgyria won't cause him any problems during the procedure, i was angry

and sad because he called my son retarded, he is anything but... chroason

testing is required and a x something. Help any advice?

" Charlotte, 's Ganny " wrote:

http://littleoddyssey.blogspot.com/

Please dont for get to visit the google ads!

Charlotte

http://littleoddyssey.blogspot.com/ Age 2 years to present:

http://babiesonline.com/babies/m/matthewsothercribb/ Age 4 mos. to 2 years

http://www.babiesonline.com/babies/m/matthewscrib/

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

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[Guest guest]

When I had Trevor tested at the South Carolina Autism clinic they wrote in

the report mentally retarded. I was astonished that in this day and age

that professionals still use that word. I lost total respect for them.

Donna

[Guest guest]

I don't know why this is posted under my ID???? I didn't email anything about a

surgery for matthew! lol

charlotte

Kristie ORouke wrote:

Charlotte,

That is crazy!!!! And I would not continue to see a Dr. who soo mildly put

it.... retarded. He needs a better bed side manner! na had strabismus

surgery when she was 1 and a g tube placement. What kind of surgery are you

needing? All I can say is it is better to be safe than sorry but I am sure you

have read a lot of children on this site end up with one kind of surgery or

another. Good luck and I will keep you in my prayers.

Kristie

wendy hansen wrote:

hi , i came from the doctor today and was told that in order for my son to have

eye surgury that he would have to have more test so that we know for sure that

Poly microgyria won't cause him any problems during the procedure, i was angry

and sad because he called my son retarded, he is anything but... chroason

testing is required and a x something. Help any advice?

" Charlotte, 's Ganny " wrote:

http://littleoddyssey.blogspot.com/

Please dont for get to visit the google ads!

Charlotte

http://littleoddyssey.blogspot.com/ Age 2 years to present:

http://babiesonline.com/babies/m/matthewsothercribb/ Age 4 mos. to 2 years

http://www.babiesonline.com/babies/m/matthewscrib/

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

Do you Yahoo!?

Make Yahoo! your home page

[Guest guest]

hi , i don't know why but i thought it would go to the group i apploigize, the

type of surgury is for strabiuma, He has asked my husband and i for MRi,

Nourolologist and now this time he want us to had chromusion testing done before

the eye surgury, to make sure that nothing happends during the surgury, i am

angry and confused and i want to know if hes just tryng to get out of it , Cirey

is able to walk talk and is learning at a rapid rate and i want to knwo if kids

with poly Microgyria can be phyically unimpaired and if it could hit him later

in life, like suizures an or more impairment? do you have any clue?

" Charlotte, 's Ganny " wrote:

I don't know why this is posted under my ID???? I didn't email anything about a

surgery for matthew! lol

charlotte

Kristie ORouke wrote:

Charlotte,

That is crazy!!!! And I would not continue to see a Dr. who soo mildly put

it.... retarded. He needs a better bed side manner! na had strabismus

surgery when she was 1 and a g tube placement. What kind of surgery are you

needing? All I can say is it is better to be safe than sorry but I am sure you

have read a lot of children on this site end up with one kind of surgery or

another. Good luck and I will keep you in my prayers.

Kristie

wendy hansen wrote:

hi , i came from the doctor today and was told that in order for my son to have

eye surgury that he would have to have more test so that we know for sure that

Poly microgyria won't cause him any problems during the procedure, i was angry

and sad because he called my son retarded, he is anything but... chroason

testing is required and a x something. Help any advice?

" Charlotte, 's Ganny " wrote:

http://littleoddyssey.blogspot.com/

Please dont for get to visit the google ads!

Charlotte

http://littleoddyssey.blogspot.com/ Age 2 years to present:

http://babiesonline.com/babies/m/matthewsothercribb/ Age 4 mos. to 2 years

http://www.babiesonline.com/babies/m/matthewscrib/

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

Do you Yahoo!?

Make Yahoo! your home page

[Guest guest]

Could you tell me more about the x recessive gene?

Trish Gustafson wrote::

We just had the same thing happen with Owen. We received a letter from Dr.

Dobyns that indicated that he believes that Owen has Congenital Muscular

Dystrophy-Mental Retardation syndrome. This was not mentioned during our

appointment, in fact he said the opposite to us in person. I am still fuming

and feel for you since you had someone say this right in front of you. I just

don't get how this type of determination can be made during a 35 minute

appointment. Plus, Owen uses 6 signs, speaks around 20 words and knows 10

different animal sounds so this really doesn't make sense. I spoke to Owen's

neurologist about this and he indicated that he NEVER uses that term. He stated

that in small children, who won't sit through an IQ test, you need to observe

them and talk to the parents. He stated that many physicians look to whether

the child has proper motor skills on top of how they interact to determine their

level of cognition, but in kids like ours this isn't a fair assessment

since their motor skills are usually behind. Dr. Franz further stated that he

does not believe that Owen is mentally retarded, he said that he is bright and

very observant, and that you never know how well these kids will do in the end.

Try not to listen to this statement about your child. I know how hard it is to

have someone say this when it is not true. But you know your child better than

anyone. If I were you, I would find another doctor.

As for the testing, I had to have an MRI to determine if the reason Owen has

issues is because of an X linked recessive gene. It came back fine. He also

had to have an extensive eye exam because many X linked problems cause problems

with the Optic nerve. We haven't had chromosome testing yet. Owen has to have

a muscle biopsis soon as much as I hate the thought, and once that is done we

will all have additional testing to try to determine what is really going on.

Good luck with the testing and keep us posted.

Love,

Trish and Owen

wendy hansen wrote:

hi , i came from the doctor today and was told that in order for my son to have

eye surgury that he would have to have more test so that we know for sure that

Poly microgyria won't cause him any problems during the procedure, i was angry

and sad because he called my son retarded, he is anything but... chroason

testing is required and a x something. Help any advice?

" Charlotte, 's Ganny " wrote:

http://littleoddyssey.blogspot.com/

Please dont for get to visit the google ads!

Charlotte

http://littleoddyssey.blogspot.com/ Age 2 years to present:

http://babiesonline.com/babies/m/matthewsothercribb/ Age 4 mos. to 2 years

http://www.babiesonline.com/babies/m/matthewscrib/

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

Do you Yahoo!?

Make Yahoo! your home page

[Guest guest]

Hi,

The doctor is just being careful.

Yes, you can have polymicrogyria without symptoms. PMG

just shows up on the MRI, usually on only one side of

the brain.

50% have seizures,most as children. As more people are

diagnosed that statistic may go down.

Pat

--- wendy hansen wrote:

> hi , i don't know why but i thought it would go to

> the group i apploigize, the type of surgury is for

> strabiuma, He has asked my husband and i for MRi,

> Nourolologist and now this time he want us to had

> chromusion testing done before the eye surgury, to

> make sure that nothing happends during the surgury,

> i am angry and confused and i want to know if hes

> just tryng to get out of it , Cirey is able to walk

> talk and is learning at a rapid rate and i want to

> knwo if kids with poly Microgyria can be phyically

> unimpaired and if it could hit him later in life,

> like suizures an or more impairment? do you have any

> clue?

>

> " Charlotte, 's Ganny "

> wrote:

> I don't know why this is posted under my ID???? I

> didn't email anything about a surgery for matthew!

> lol

> charlotte

>

> Kristie ORouke wrote:

> Charlotte,

> That is crazy!!!! And I would not continue to see

> a Dr. who soo mildly put it.... retarded. He needs a

> better bed side manner! na had strabismus

> surgery when she was 1 and a g tube placement. What

> kind of surgery are you needing? All I can say is it

> is better to be safe than sorry but I am sure you

> have read a lot of children on this site end up with

> one kind of surgery or another. Good luck and I will

> keep you in my prayers.

> Kristie

>

> wendy hansen wrote:

> hi , i came from the doctor today and was told that

> in order for my son to have eye surgury that he

> would have to have more test so that we know for

> sure that Poly microgyria won't cause him any

> problems during the procedure, i was angry and sad

> because he called my son retarded, he is anything

> but... chroason testing is required and a x

> something. Help any advice?

>

>

> " Charlotte, 's Ganny "

> wrote:

> http://littleoddyssey.blogspot.com/

> Please dont for get to visit the google ads!

> Charlotte

>

>

>

>

>

> http://littleoddyssey.blogspot.com/ Age 2 years to

> present:

> http://babiesonline.com/babies/m/matthewsothercribb/

> Age 4 mos. to 2 years

> http://www.babiesonline.com/babies/m/matthewscrib/

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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

> Do you Yahoo!?

> Make Yahoo! your home page

>

> [Non-text portions of this message have been

> removed]

>

>

>

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

>

[Guest guest]

We just went to see Dr. Dobyns and he indicated that 80% of children with PMG

have seizures at some point and 50% become epileptic. I don't know if this is a

new statistic or not, but just thought I would share!

pat oneill wrote:Hi,

The doctor is just being careful.

Yes, you can have polymicrogyria without symptoms. PMG

just shows up on the MRI, usually on only one side of

the brain.

50% have seizures,most as children. As more people are

diagnosed that statistic may go down.

Pat

--- wendy hansen wrote:

> hi , i don't know why but i thought it would go to

> the group i apploigize, the type of surgury is for

> strabiuma, He has asked my husband and i for MRi,

> Nourolologist and now this time he want us to had

> chromusion testing done before the eye surgury, to

> make sure that nothing happends during the surgury,

> i am angry and confused and i want to know if hes

> just tryng to get out of it , Cirey is able to walk

> talk and is learning at a rapid rate and i want to

> knwo if kids with poly Microgyria can be phyically

> unimpaired and if it could hit him later in life,

> like suizures an or more impairment? do you have any

> clue?

>

> " Charlotte, 's Ganny "

> wrote:

> I don't know why this is posted under my ID???? I

> didn't email anything about a surgery for matthew!

> lol

> charlotte

>

> Kristie ORouke wrote:

> Charlotte,

> That is crazy!!!! And I would not continue to see

> a Dr. who soo mildly put it.... retarded. He needs a

> better bed side manner! na had strabismus

> surgery when she was 1 and a g tube placement. What

> kind of surgery are you needing? All I can say is it

> is better to be safe than sorry but I am sure you

> have read a lot of children on this site end up with

> one kind of surgery or another. Good luck and I will

> keep you in my prayers.

> Kristie

>

> wendy hansen wrote:

> hi , i came from the doctor today and was told that

> in order for my son to have eye surgury that he

> would have to have more test so that we know for

> sure that Poly microgyria won't cause him any

> problems during the procedure, i was angry and sad

> because he called my son retarded, he is anything

> but... chroason testing is required and a x

> something. Help any advice?

>

>

> " Charlotte, 's Ganny "

> wrote:

> http://littleoddyssey.blogspot.com/

> Please dont for get to visit the google ads!

> Charlotte

>

>

>

>

>

> http://littleoddyssey.blogspot.com/ Age 2 years to

> present:

> http://babiesonline.com/babies/m/matthewsothercribb/

> Age 4 mos. to 2 years

> http://www.babiesonline.com/babies/m/matthewscrib/

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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

> Do you Yahoo!?

> Make Yahoo! your home page

>

> [Non-text portions of this message have been

> removed]

>

>

>

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

>

[Guest guest]

I am no expert in genetics, but from what I recall from our two appointments

with different geneticists, testing has shown that PMG can be X linked in many

kids. If this is the case, then it comes from the mother who carries a

recessive gene. This can be shown on an MRI of the mother. I am not sure if

you have ever had an MRI, but they are not too bad. I have had two and am

extremely claustrophobic. The second went great because it was for kids so I

was able to watch Finding Nemo which took my mind off of the small space!

wendy hansen wrote:Could you tell me more about the x

recessive gene?

Trish Gustafson wrote::

We just had the same thing happen with Owen. We received a letter from Dr.

Dobyns that indicated that he believes that Owen has Congenital Muscular

Dystrophy-Mental Retardation syndrome. This was not mentioned during our

appointment, in fact he said the opposite to us in person. I am still fuming

and feel for you since you had someone say this right in front of you. I just

don't get how this type of determination can be made during a 35 minute

appointment. Plus, Owen uses 6 signs, speaks around 20 words and knows 10

different animal sounds so this really doesn't make sense. I spoke to Owen's

neurologist about this and he indicated that he NEVER uses that term. He stated

that in small children, who won't sit through an IQ test, you need to observe

them and talk to the parents. He stated that many physicians look to whether

the child has proper motor skills on top of how they interact to determine their

level of cognition, but in kids like ours this isn't a fair assessment

since their motor skills are usually behind. Dr. Franz further stated that he

does not believe that Owen is mentally retarded, he said that he is bright and

very observant, and that you never know how well these kids will do in the end.

Try not to listen to this statement about your child. I know how hard it is to

have someone say this when it is not true. But you know your child better than

anyone. If I were you, I would find another doctor.

As for the testing, I had to have an MRI to determine if the reason Owen has

issues is because of an X linked recessive gene. It came back fine. He also

had to have an extensive eye exam because many X linked problems cause problems

with the Optic nerve. We haven't had chromosome testing yet. Owen has to have

a muscle biopsis soon as much as I hate the thought, and once that is done we

will all have additional testing to try to determine what is really going on.

Good luck with the testing and keep us posted.

Love,

Trish and Owen

wendy hansen wrote:

hi , i came from the doctor today and was told that in order for my son to have

eye surgury that he would have to have more test so that we know for sure that

Poly microgyria won't cause him any problems during the procedure, i was angry

and sad because he called my son retarded, he is anything but... chroason

testing is required and a x something. Help any advice?

" Charlotte, 's Ganny " wrote:

http://littleoddyssey.blogspot.com/

Please dont for get to visit the google ads!

Charlotte

http://littleoddyssey.blogspot.com/ Age 2 years to present:

http://babiesonline.com/babies/m/matthewsothercribb/ Age 4 mos. to 2 years

http://www.babiesonline.com/babies/m/matthewscrib/

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

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Make Yahoo! your home page