New Member

[Guest guest]

Welcome to the group, .

My name is and my daughter, Kaitlyn is 19 and has autism. I also have

an incredible 22 year old son who really helps us with his sister (:

I do have a hubby, whom I always forget to mention. His name is Bob.

_____

From: Autism_in_Girls

[mailto:Autism_in_Girls ] On Behalf Of TBrown@...

Sent: Wednesday, May 07, 2008 3:22 AM

To: Autism_in_Girls

Subject: Re: Re: New Member

HI

I am Tony mum to two girls aged 8 and almost two, the elder has recently

been diagnosed with autism. i am in the UK

Tony

[Guest guest]

My daughter was identified with ASD when my son was 2 months old. I spent

days, months, what seems like forever worrying about what would happen to my

son since the rates classically are higher in boys than girls. My son is now

16 months old and I am confident he is neuro-normal. The only difference,

that I can think of, is that I was very stressed during my pregnancy with

Kaylin. My dad had had a stroke and lived in a nursing home and I was his

conservator for 2 years while I was trying to get pregnant. He died when I

was 6

months pregnant. After his passing, I was in charge of his estate all while

working full-time. I had very little sickness with her, she was VERY active

during the whole pregnancy and feel as though she had signs since birth (she

could turn on the music in her crib at 11 weeks old and lull herself to

sleep). My advice to you is not to stress out about it because I feel stress

may

have been the most logical cause in my mind.

I also have a brother 12 years older than me who has never been diagnosed,

but is definitely on the spectrum, so I say genes were part of it as well.

Angie (mom to Kaylin, 4 ( " autistic-like " on the E2 scale) and Nate, 16 mo.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

My daughter was identified with ASD when my son was 2 months old. I spent

days, months, what seems like forever worrying about what would happen to my

son since the rates classically are higher in boys than girls. My son is now

16 months old and I am confident he is neuro-normal. The only difference,

that I can think of, is that I was very stressed during my pregnancy with

Kaylin. My dad had had a stroke and lived in a nursing home and I was his

conservator for 2 years while I was trying to get pregnant. He died when I

was 6

months pregnant. After his passing, I was in charge of his estate all while

working full-time. I had very little sickness with her, she was VERY active

during the whole pregnancy and feel as though she had signs since birth (she

could turn on the music in her crib at 11 weeks old and lull herself to

sleep). My advice to you is not to stress out about it because I feel stress

may

have been the most logical cause in my mind.

I also have a brother 12 years older than me who has never been diagnosed,

but is definitely on the spectrum, so I say genes were part of it as well.

Angie (mom to Kaylin, 4 ( " autistic-like " on the E2 scale) and Nate, 16 mo.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Debi and others,

For those of you who have one child with autism and one without, did

you do anything differently in the pregnancies? I have a 3 year old

girl with classic autism and am now 17 weeks pregnant. Any input or

encouragement would be appreciated. obviously, I am terrified, but I

know I will catch it and intervene early if this child is autistic as

well.

Thanks,

>

> Welcome . I am mom to three girls, 11, almost 9, and 5. My almost

> 9 yr old has autism.

>

> Debi

>

[Guest guest]

Debi and others,

For those of you who have one child with autism and one without, did

you do anything differently in the pregnancies? I have a 3 year old

girl with classic autism and am now 17 weeks pregnant. Any input or

encouragement would be appreciated. obviously, I am terrified, but I

know I will catch it and intervene early if this child is autistic as

well.

Thanks,

>

> Welcome . I am mom to three girls, 11, almost 9, and 5. My almost

> 9 yr old has autism.

>

> Debi

>

[Guest guest]

Hi ,

I have 2 girls, 17 mos apart, & my youngest has autism. I wonder, in my

case, if Kim didn't become autistic b/c after Becky's c-section birth, I

couldn't get out of bed for a whole month & I got pregnant too soon before

my body was fully recovered from Becky's birth. Your daughter is already 3,

so that shouldn't be an issue for this pregnancy. I've heard that you

should be on a gfcf diet yourself to lessen the burden on your body. I

would also have a clean environment in your home, especially your bedroom,

use safe household cleaning products. I'm sure there's other thoughts that

others will respond with. Congrats on your pregnancy.

On Wed, May 7, 2008 at 4:55 PM, misscrna1

wrote:

> Debi and others,

>

> For those of you who have one child with autism and one without, did

> you do anything differently in the pregnancies? I have a 3 year old

> girl with classic autism and am now 17 weeks pregnant. Any input or

> encouragement would be appreciated. obviously, I am terrified, but I

> know I will catch it and intervene early if this child is autistic as

> well.

>

> Thanks,

>

>

>

>

>

> >

> > Welcome . I am mom to three girls, 11, almost 9, and 5. My almost

> > 9 yr old has autism.

> >

> > Debi

> >

>

>

>

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

>

> Autism_in_Girls-subscribe

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

> Autism_in_Girls-unsubscribe@...! Groups Links

>

>

>

>

--

Marie A. (mom to Kim, 16 on 2-29-92 & Becky, a senior & gets the best

sibling award)

[Guest guest]

Hi ,

I have 2 girls, 17 mos apart, & my youngest has autism. I wonder, in my

case, if Kim didn't become autistic b/c after Becky's c-section birth, I

couldn't get out of bed for a whole month & I got pregnant too soon before

my body was fully recovered from Becky's birth. Your daughter is already 3,

so that shouldn't be an issue for this pregnancy. I've heard that you

should be on a gfcf diet yourself to lessen the burden on your body. I

would also have a clean environment in your home, especially your bedroom,

use safe household cleaning products. I'm sure there's other thoughts that

others will respond with. Congrats on your pregnancy.

On Wed, May 7, 2008 at 4:55 PM, misscrna1

wrote:

> Debi and others,

>

> For those of you who have one child with autism and one without, did

> you do anything differently in the pregnancies? I have a 3 year old

> girl with classic autism and am now 17 weeks pregnant. Any input or

> encouragement would be appreciated. obviously, I am terrified, but I

> know I will catch it and intervene early if this child is autistic as

> well.

>

> Thanks,

>

>

>

>

>

> >

> > Welcome . I am mom to three girls, 11, almost 9, and 5. My almost

> > 9 yr old has autism.

> >

> > Debi

> >

>

>

>

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

>

> Autism_in_Girls-subscribe

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

> Autism_in_Girls-unsubscribe@...! Groups Links

>

>

>

>

--

Marie A. (mom to Kim, 16 on 2-29-92 & Becky, a senior & gets the best

sibling award)

[Guest guest]

I am glad to see some autistic girls on here writing. My biggest wish

would be that one day hannah would take an interest in wanting to

communicate with people on the net. she loves computers and games..but

to communicate would be such a huge step...........i envy you girls, i

really do.

>

> > Hello,

> >

> > My name is Jessie and I am a 30 y/o autistic woman.

> > I am also a

> > college student studing early childhood education

> > with a focus on

> > special needs children and I want to work with

> > autistic children.

> >

> > I resently started my own blog where I am telling my

> > unique story. I

> > hope that it will be to the benefit of many.

> >

> > I was not diagnosed with autism as a child, they

> > told my parents

> > that I had a failure to thrive. However, as I

> > continue on my path of

> > discovery I have found more insight into things I

> > never could

> > understand the how's or why I was so " different. "

> >

> > The symptoms have always been there, but the

> > diagnosis has always

> > been different. Brain damage, failure to thrive,

> > manic depression,

> > and even psychosis. None of which were likely.

> >

> > Many different types of treatments were tried as I

> > progressed into

> > adulthood. It was here that self discovery and

> > couriosity have led

> > me down a path of familiarity. Finally I have found

> > people who can

> > relate to me. I hope my story will help those like

> > me and their

> > famlies.

> >

> > http://speakup.today.com

> >

> > Please feel free to tell your own story and to write

> > about your

> > causes and fund raisers. Ask me questions if you

> > like. Being new to

> > the online autism community I could also use advise

> > on good links to

> > add to my resourse page.

> >

> > Again, the blog is where I am telling my story.

> >

> > Thanks,

> >

> > Jessie

> >

> >

>

>

>

>

________________________________________________________________________\

____________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

,

Welcome to the group! I am a mom of a 4-1/2 year old wiith Autism, but I

have a brother who is 51 who has never been diagnosed, but I am sure he is...I

am just not sure if I should mention it to him. He is very concerned for my

daughter and asks what I am doing for her regularly so I suspect maybe he has

an idea he may be on the spectrum. I just never knew whether telling him my

feelings would really help anything.

It is a very active and wonderful group, I have learned a lot since I have

joined. I hope you do too!

Angie

Mom to Kaylin and Nate (1-1/2)

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

,

Welcome to the group! I am a mom of a 4-1/2 year old wiith Autism, but I

have a brother who is 51 who has never been diagnosed, but I am sure he is...I

am just not sure if I should mention it to him. He is very concerned for my

daughter and asks what I am doing for her regularly so I suspect maybe he has

an idea he may be on the spectrum. I just never knew whether telling him my

feelings would really help anything.

It is a very active and wonderful group, I have learned a lot since I have

joined. I hope you do too!

Angie

Mom to Kaylin and Nate (1-1/2)

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

anna there is of several adult females here with dx of spectrum here. I

to be of adult female with dx of autism in the USA state of Ohio. have

been of active member here for many years. while this list is specific

to females it might not help much for you in regards to you son but you

are of welcome to join in here and learn of spectrum from female

versions of it.

I to also have a much good friend from sweden who is of an author and

speaker on a variety of autism issues, she is of named Gunnel. I to

only shared of her name because she is of a published author of you

country and is of a known speaker.

Sondra

[Guest guest]

anna there is of several adult females here with dx of spectrum here. I

to be of adult female with dx of autism in the USA state of Ohio. have

been of active member here for many years. while this list is specific

to females it might not help much for you in regards to you son but you

are of welcome to join in here and learn of spectrum from female

versions of it.

I to also have a much good friend from sweden who is of an author and

speaker on a variety of autism issues, she is of named Gunnel. I to

only shared of her name because she is of a published author of you

country and is of a known speaker.

Sondra

[Guest guest]

Hi Maggie

My daughter is 12. She is mostly non-verbal (but improving) and has

always responded well to visual instructions. We often found that her

behaviour was different for different people and never really tried

ABA. She is also expert at hiding her real reaction to a situation. She

may appear not to have noticed something (eg another child pushing her)

and then a few days later I can find her hiding in a cupboard crying

and mumbling a few key words (like the childs name) about the incident.

I have read many suggestions that autistic children don't show emotion

but I have noticed with my daughter that she feels very deeply but

hides her reactions until she has some privacy. That includes fear.

Anyway, we have found that the most successful approach for our

daughter is one on one teaching with people her have high expectations

of success. She has become expert at picking those that expect little

and will behave accordingly. It's been very interesting to watch her

behaviour change for different people. People who expect little from

her see a non-verbal child with concentration and behavioural problems.

People who know her and expect more, see a child with autism trying

hard to talk and learn.

I hope this helps a little.

>

> Hi

>

> I just joined the list.My 7yo dd (Kassie) is autistic.

>

> I'm looking for ideas to teach her things without resorting to formal

ABA,

> which, so far, has been the only way we know she can learn things.

>

> Many thanks for any ideas you can offer.

>

> Maggie

> San Ramon

>

[Guest guest]

Hi Maggie

My daughter is 12. She is mostly non-verbal (but improving) and has

always responded well to visual instructions. We often found that her

behaviour was different for different people and never really tried

ABA. She is also expert at hiding her real reaction to a situation. She

may appear not to have noticed something (eg another child pushing her)

and then a few days later I can find her hiding in a cupboard crying

and mumbling a few key words (like the childs name) about the incident.

I have read many suggestions that autistic children don't show emotion

but I have noticed with my daughter that she feels very deeply but

hides her reactions until she has some privacy. That includes fear.

Anyway, we have found that the most successful approach for our

daughter is one on one teaching with people her have high expectations

of success. She has become expert at picking those that expect little

and will behave accordingly. It's been very interesting to watch her

behaviour change for different people. People who expect little from

her see a non-verbal child with concentration and behavioural problems.

People who know her and expect more, see a child with autism trying

hard to talk and learn.

I hope this helps a little.

>

> Hi

>

> I just joined the list.My 7yo dd (Kassie) is autistic.

>

> I'm looking for ideas to teach her things without resorting to formal

ABA,

> which, so far, has been the only way we know she can learn things.

>

> Many thanks for any ideas you can offer.

>

> Maggie

> San Ramon

>

[Guest guest]

Hello ,

I am Sandi. It is nice to meet you. My brother Ron is a photographer who

lives near Göteborg with his fiancé Jeanette. He is just completing the

process to become a permanent resident of Sweden.

My husband has never been evaluated or diagnosed with autism/AS, and neither

has his father, but they are both sure they could be. They had never been

exposed to the idea until our daughter came along and began our unexpected

education. They feel that what we have learned as a family about autism has

explained so many things. I think there must be many people who could get a

diagnosis, even as adults, if they chose.

Sandi (Allie's mom)

Houston, Texas, USA

In a message dated 6/20/2008 11:27:51 A.M. Central Daylight Time,

pettson39@... writes:

Hello!

I am from Sweden,42 yr and should like to know whether there are

some dx with AS in mature age? I have a son,12 yr in summer,recently

dx with AS and I strongly suspect I have it,too.

..

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Hi ,

 

First of all, welcome to the group!  My name is Robin Hudson and I have a two

and a half year old son with PMG.  I, too, just recently found out this

diagnosis.  When I was pregnant with my son, doctors informed me that has

Microcephaly (small head).  They told me when I was eight months pregnant to

terminate the pregnancy because they felt would not survive birth, let

alone, crawl, walk, talk or do anything that " normal " children do. My husband

and I could not go through with that so we went ahead with the pregnacy. 

fortanately survived birth and has been progressing ever since.  He walked at 13

months and cognitively understands everything we telll him.  He still can not

talk and does not even babble, but like I said, he understands everything.

 

I have been the California State Rep for the Foundation of Children with

Microcephaly and we just recently held our first annual convention in sdale

where I met with Dr. Dobyns from Chicago.  He is the one that read 's MRI

and informed me of the PMG.  I still do not know much about it either and I am

waiting for his written reports of the appointment.  He informed me that he most

likely would never speak and that he will most likely have epiletic seizures. 

Like you, I am horrifed of those.  To this day, he has not had one that I know

of.  I know they can come in many different types, but I dont believe he has had

one of any kind.  It terrifies me because I am constintley waiting for them to

happen.  I don't want to leave him alone for a second because I dont want to not

be there if he does have one.  I don't think that there is anything we can do

but wait and hope that they dont start.  I have had people tell me that I am

wasting away

my life just waiting and worrying.  But I cant help it.  He is my son and I am

his mother.  It is my job to protect him.  It is just a terrifying feeling that

there are other " monsters' out there that I can't protect him from no matter how

hard I try and I will never know when these " monsters' will show up.

 

Did you know something was wrong with your son from the beginning or did you

just start noticing things werent right?  What other issues does he have?  I

would love to talk to you more.  You will also find a ton of supportive people

on this site.  You have came to the right place!  Hope to hear from you soon.

 

Robin Hudson

Subject: New Member

To: polymicrogyria

Date: Saturday, August 16, 2008, 6:35 PM

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

[Guest guest]

Welcome to the group and Gage.

Just to offer a little hope here. just turned 7 and he has never

had a seizure(knock wood). Dr Dobyns told us that he remains at an 80%

chance of developing them, but so far, so good. His EEG is normal too,

however our neuro told us that because the bulk of the PMG is in the

frontal lobe, seizure activity be very difficult to detect(I don't

know why though). I think there are a few others on here that also

have not had to deal with seizures as yet, so it really does affect

the majority of our kids. I also hope that I will never have to deal

with seizures, but I know that if and when I do, the experts here in

this group will point me in the right direction.

Good luck!

Sue

Mom to Meghan(12), and (7)BFPP, microcephaly, moderate spastic quad CP

>

> Hi,

> My name is and my son Gage (18 months) was just diagnosed with

> PMG this last Thursday. We have been waiting for 11 months for someone

> to tell us what is going on and finally Dr. at Texas

> Childrens Hospital was able to see with his MRI what was going on. I

> of course have so many questions and concerns and I will spend a lot of

> time researching this. One question that is most likely one of the

> most common is about seizures. I was wondering if anyone knows if

> there is an average age that siezures start? He has not had one and it

> is one of my biggest fears.

> Thank you,

> and Gage

>

[Guest guest]

Hi ! 

 

I am glad you found this group.  My son, Ethan, is 3 1/2 and has not had a

seizure.  From what I have read and heard, seizures will continue to lurk as a

possiblity for Ethan all through elementary school.  This group has definitely

helped prepare me for what to do if it does happen.   He starts preschool on

Monday, and I have made his teachers aware of the possibility, so they will be

prepared, too.  The most important thing we found was to get Ethan as much

therapy as possible, as soon as possible.  He receives speech, occupational and

physical therapy, each twice a week.  The differences in him in the past year

are astounding!!  Please continue to use this group as a resource.  I have found

that the moms and dads on here are amazing parents to amazing kids. 

 

Kate

 

mom to (5) and Ethan (3,) diagnosed with BPP

Subject: New Member

To: polymicrogyria

Date: Saturday, August 16, 2008, 8:35 PM

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

[Guest guest]

Thank you all for responding to my post regarding Gage.  I guess it is just wait

and see when seizures may come.  We were told he has a 70% probablity of having

them.

 

Robin-

When we had Gage he looked normal and there were no signs that there was

anything out of the ordinary.  He does have a large head, but I think it is

mostly due to genetics (Dad and brother had large head circ.)  I did have

concerns around the time he was 5 months.  He was not reaching for toys or

making good eye contact.  We were referred to a pediatric opthomoligist and he

sent him to get an MRI because he thought he may have something wrong with the

optic nerve.  The optice nerve was fine, but they found other parts of the brain

abnormal.  He was seen by two neuroligist here (New Orleans area) and no one

could figure out what they were seeing.  He had another MRI last month and we

were referred to Dr. in Houston and he was able to tell us what he has. 

 

Other than PMG he may have one of two types of metabolic disorders that they are

testing for right now.  If he does, they can treat it with medication and

treating it will help prevent him from having a stroke.  He also has poor

eyesight and wears glasses.  His eyes do not align and wears a patch to help

correct this.  Otherwise, he does not have any other types of diagnosis now.  He

does babble and says a few words, just started crawling a month ago and just

started waving.  He is making good progress and his therapies have definately

been a big help.

 

I am happy to hear that you made a good decision in not ending the pregnancy. 

He made it through delivery and is with you now so he definatley has a place is

this world.  Each child is such a gift.  Gage and your son will have some

obstacles in life, but the joy they brings us out weighs those.

 

and Gage

From: mkatie76 <mkatie76yahoo (DOT) com>

Subject: New Member

To: polymicrogyria@ yahoogroups. com

Date: Saturday, August 16, 2008, 6:35 PM

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

[Guest guest]

was much like Gage. Appeared perfectly normal as an infant, but about 5

months he was not developing the age appropriate motor skills... holding things,

etc. had his first seizure around his 4th birthday. Up until then, we

had not seen anything seizure related, except for maybe staring spells etc.

He is 10 now, and his seizures are controlled...knock on wood.. and his stomach

and breathing and orthopedic problems keep us busy... Awareness is the most

important thing about the seizures. When had his first major one, we

were freaked out...but not surprised...because they said he had a high liklihood

of eventually developing them.

Best of luck to you all. , Mom to darling ... age 10...

bilateral diffuse PMG 80% affected.

Brown wrote:

Thank you all for responding to my post regarding Gage. I guess it is

just wait and see when seizures may come. We were told he has a 70% probablity

of having them.

Robin-

When we had Gage he looked normal and there were no signs that there was

anything out of the ordinary. He does have a large head, but I think it is

mostly due to genetics (Dad and brother had large head circ.) I did have

concerns around the time he was 5 months. He was not reaching for toys or

making good eye contact. We were referred to a pediatric opthomoligist and he

sent him to get an MRI because he thought he may have something wrong with the

optic nerve. The optice nerve was fine, but they found other parts of the brain

abnormal. He was seen by two neuroligist here (New Orleans area) and no one

could figure out what they were seeing. He had another MRI last month and we

were referred to Dr. in Houston and he was able to tell us what he has.

Other than PMG he may have one of two types of metabolic disorders that they are

testing for right now. If he does, they can treat it with medication and

treating it will help prevent him from having a stroke. He also has poor

eyesight and wears glasses. His eyes do not align and wears a patch to help

correct this. Otherwise, he does not have any other types of diagnosis now. He

does babble and says a few words, just started crawling a month ago and just

started waving. He is making good progress and his therapies have definately

been a big help.

I am happy to hear that you made a good decision in not ending the pregnancy.

He made it through delivery and is with you now so he definatley has a place is

this world. Each child is such a gift. Gage and your son will have some

obstacles in life, but the joy they brings us out weighs those.

and Gage

From: mkatie76 <mkatie76yahoo (DOT) com>

Subject: New Member

To: polymicrogyria@ yahoogroups. com

Date: Saturday, August 16, 2008, 6:35 PM

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

[Guest guest]

, I would think about taking him to see Dr. Dobyns... in Chicago.... he is

the national expert on PMG...and runs a clinic just for these types of

malformations.

Dr. Dobyns has so much information on PMG...based on years and years of his

research...and he was the most informative person we have (to date) spoken with

regarding our sons prognosis.

If you are really concerned about Gage's potential for seizures, I would

suggest getting a good neurologist on his team, go to see them...maybe they will

do a baseline sleep study or EEG to see if anything strange is happening. Then

you can have some educational guidance on seizure rescue meds... just in case...

knowledge is powerful.. if he does ever have a seizure, stopping it quickly will

keep him safe. We didnt always know what to do in the beginning.... and we

started learning about PMG just about the same time you are.

I know its a alot....but has been through alot..and even with all of

his problems..he is sweet, healthy, and has made it through every seizure and

every surgery with a resiliency that blows my mind.

But seriously.. see if you can get him to Dr. Dobyns, or at least get his

films there.

Good luck.. Hasselberger, Mom to , age 10 bilateral diffuse PMG

80%

mkatie76 wrote:

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

To be come fully alive a person must have goals and aims that transcend

himself - Herbert A. Otto

[Guest guest]

Chloe, now 7 also appeared normal till 5 months like s . Seizures

started at around 3 years albeit she had had the brief staring spells we did

not/would not accept as seizures (they were) She is largely controlled with meds

now.

Dom

New Member

To: polymicrogyria@ yahoogroups. com

Date: Saturday, August 16, 2008, 6:35 PM

Hi,

My name is and my son Gage (18 months) was just diagnosed with

PMG this last Thursday. We have been waiting for 11 months for someone

to tell us what is going on and finally Dr. at Texas

Childrens Hospital was able to see with his MRI what was going on. I

of course have so many questions and concerns and I will spend a lot of

time researching this. One question that is most likely one of the

most common is about seizures. I was wondering if anyone knows if

there is an average age that siezures start? He has not had one and it

is one of my biggest fears.

Thank you,

and Gage

[Guest guest]

My irritation and anger has lessened some now that I'm off of it for a few

weeks. I feel numb to most things still. But I did almost get a DUI the other

weekend cause I was fighting with the ex on the phone on the way to my moms

house. Lucky I pulled over to calm down so not to hurt myself again. Then the

cops showed up. I was told to walk home.

It was getting pretty bad there at the end and right when I stopped taking them

or if I missed a day. The withdrawal set in quick so I'd have to make sure to

get home fast if I did not have them with me. My head hurts now as I type this

and does for most of the day. A dull constant ache. I stopped taking them more

then a few weeks ago. For the second time. I think that it's worse the second

time you get off of them.

I could not even be around my kids without freaking out on them and yelling. All

they wanted to do was have fun and laugh but it would drive me nuts. I felt that

this is not how I want to be. That had gone on and off for the time I was taking

them. The ex just thought I was crazy and still does. She did not help by having

phone sex with my best friend for months behind my back.

It's been rough and I just want to try and feel normal again. I should never

have taken these pills they have changed my life for the worse.

I'll check the FAQ out I'm wanting to know what vitimins I can take to bring

myself back to normal levels of whatever is missing.

Thanks

> >

> > I was taking Zoloft for a year for Generalized Anxiety and Panic

> disorders and noticed a

> > gradual decrease in libido, leading me to stop taking it. Towards

> the end I really had no

> > sex drive at all. This is very unusual for me because before I

> began taking it I thought

> > there was no way I would have this side effect...that's how strong

> my libido used to be. So

> > I've been off of the drug for 6 months and am still having the

> problem. Has anyone found

> > anything that seems to help..specific to absence of sex drive due

> to Zoloft? I'm only 24

> > years old and the thought that my brain is permanently damaged in

> this way is

> > devastating.

> >

>

[Guest guest]

Hang in there bro, I know the feeling. Coming off this sheet is just horrendous.

It takes a little while to get past the withdrawal symptoms. Don't count on

sleeping real good. And you are going to be really irritable. Sorry to inform

you, but I have to be honest. Could of/should of, I know I wish I had never gone

on them myself, but I can't do anything about that now! It was suggested by my

doctor at the time in NY, to try them because of some mild anxiety due to a

situation in my life. I still remember just before getting off of the AD's, I

saw a new doctor here in NC, to renew the script. I told him, that I was

experiencing some sexual side effects, and the schmuck tells me about one of the

positive effects of prolonging ejaculation. I should have strangled the little

F* & ^ right then and there! It's been a little over a year since stopping cold

turkey, and I am still feeling some repercussions. Mental wise I feel fine. But

the sexual side effects linger on. I have good days, but just wish I could get

back to how I felt before stopping the AD's. Sometimes I have thoughts of going

back on them to see if this would reverse the effects. But then I have read on

here, that this doesn't help. I know on my good days, everything works just

fine, but it is not consistent. That's the frustrating part. I have tried all of

the remedies that I have read on here. I mean all of them, including most

recently, Dostinex. I think the problem with most of the cures are, that they

might effect one hormone/neurotransmitter positively, but at the same time

negatively effect another. Plus I am just guessing as to what the cause really

is, neurotransmitter/hormone. The guys on another forum told me that a total

Testosterone count of 382 was too low. And I am reading that low dopamine can

cause low testosterone. I know I tried L-Dopa on a few occasions, and this

seemed to have a very positive effect. L-Dopa increases dopamine. So this

confounds me more! Which came first, the chicken or the egg. I have decided

to give myself a break from the remedies, and just take the little orange pill

as needed. I have an appointment with an Endo in a week. I am going to ask

her for a full blood panel. Ya know, LH, FLH, Estradiol, total T, free T,

Prolactin and such. I have not gone without taking something since I got off the

AD. Maybe I just need to let my body balance itself out on it's own!

>

> I thought I'd say hi since I have a feeling I'll be on here a bit. I'm 35 I

was on SSRI's (Lexapro for 6 months then later on Zoloft 100mg for maybe over 2

years) For Depression, OCD and Anxiety. I was off them for about 3 months then

got back on them for about a month or two and I kind of weened off almost a

month ago.

>

> I have headaches, brain zaps all the time, my neck aches and I feel like I've

got a cold all the time. I've recently gone through a divorce and feel like I've

lost most everything that I thought was my life.

>

> I had the doctor switch me to something beside Lexapro cause I notice sexual

side effects like not able to get aroused, soft erections and or losing it

during sex and no interest in sex. I got put on Zoloft and thought all was

better but it just took me longer to climax and I never really cared much for

sex it lost it's feeling.

>

> I'm hoping that I can get back to normal cause this is making it hard to be

excited about the rest of my life. Now that I'm divorced and playing in a band

I'm afraid to get to know any girls cause so far I've only had bad experiences

so far. Let just say it was over before they knew what happen.

>

> So I'm gonna read everything on here and go back to the doctor and tell him

what has happen to me and hope he takes me serious. If not I'm going to find a

new doctor and try and get something to fix this. Has anyone tried Acupuncture?

>

> I'm not very happy about what these doctors and drug companies have done to so

many people it makes me very upset and I think that we need to get this to the

public. I hope to meet new friends and learn about what I can do to help me feel

male again.

>

> Thank you

>

[Guest guest]

Watch this video, and if you can, give your doctor this link too.

http://www.sexsmartfilms.com/free-videos/libido-lost/

Kaivey

>> I thought I'd say hi since I have a feeling I'll be on here a bit. I'm 35 I was on SSRI's (Lexapro for 6 months then later on Zoloft 100mg for maybe over 2 years) For Depression, OCD and Anxiety. I was off them for about 3 months then got back on them for about a month or two and I kind of weened off almost a month ago. > > I have headaches, brain zaps all the time, my neck aches and I feel like I've got a cold all the time. I've recently gone through a divorce and feel like I've lost most everything that I thought was my life. > > I had the doctor switch me to something beside Lexapro cause I notice sexual side effects like not able to get aroused, soft erections and or losing it during sex and no interest in sex. I got put on Zoloft and thought all was better but it just took me longer to climax and I never really cared much for sex it lost it's feeling.> > I'm hoping that I can get back to normal cause this is making it hard to be excited about the rest of my life. Now that I'm divorced and playing in a band I'm afraid to get to know any girls cause so far I've only had bad experiences so far. Let just say it was over before they knew what happen.> > So I'm gonna read everything on here and go back to the doctor and tell him what has happen to me and hope he takes me serious. If not I'm going to find a new doctor and try and get something to fix this. Has anyone tried Acupuncture? > > I'm not very happy about what these doctors and drug companies have done to so many people it makes me very upset and I think that we need to get this to the public. I hope to meet new friends and learn about what I can do to help me feel male again. > > Thank you>