Hello

[Guest guest]

So nice to hear from you, as a old timer on this list I sometime feel

disconnected. Hope that Crystal is doing well.

and Kennedy(7yrs.,pmg)

http://www.geocities.com/kenjenjennings/

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Re: Hello

>Date: Mon, 29 Jan 2007 18:51:56 -0000

>

>, I just looked at the photo of Kennedy & her sister. The

>girls have gotten so big. They're both beautiul little girls !

>

>With love to you all...

>

> & Crystal Aquielle...

>

>

> >

> > Annette,

> >

> > All that any of us can do is try and give our little ones the best

>quality

> > of like possible. To me that means getting all the therapies and

>attention

> > possible. I will not have a doctor or therapist that does not

>believe in

> > Kennedy, if they have a bad additude they get kicked to the curb.

>NO ONE is

> > going to tell me what my little girl will or will not do. She use

>to see a

> > so called " developement specialist " but he was an idiot and never

>had

> > anything good to say so I got rid of him quick.

> >

> >

> >

> > and Kennedy(7yrs.,pmg)

> > http://www.geocities.com/kenjenjennings/

> >

> >

> >

> >

> >

> > >

> > >Reply-To: polymicrogyria

> > >To: polymicrogyria

> > >Subject: Hello

> > >Date: Sat, 27 Jan 2007 13:35:23 -0000

> > >

> > >My son was diagnosised in early Oct. 2006 with PMG. He is

>almost 15

> > >months old.

> > >I found this group shortly after his diagnosis and have found it

>comforting

> > >to know there

> > >are others out there dealing with this diagnosis on a daily basis

>and

> > >thriving which gives

> > >me hope and also knowing there are others out there struggling

>with this

> > >diagnosis as it

> > >allows me to know I am not alone. I want to thank all of you for

>sharing

> > >your stories and

> > >your information, as we have gotten little info on PMG from any of

>our

> > >doctors. You are

> > >truly amazing people.

> > >

> > >Here is our story. was born at 38 weeks after a normal,

>uneventful

> > >pregnancy. He

> > >is a wonderful little guy who is very tolerant of most things and

>his

> > >smiles are contagious.

> > >I suspected something was wrong with his development at around 6

>months.

> > >Although his

> > >ped. thought he was just a lazy baby, she made referrals based on

>my

> > >concerns. We had a

> > >head xray done that came back normally and then an MRI which gave

>us our

> > >dreaded label

> > >of PMG. I have searched for info on PMG and found very little. I

>have

> > >been in contact with

> > >the Walsh lab in Boston and am waiting to hear back from them.

>Has anyone

> > >been to the

> > >brain malformation clinic in Boston? We are currently petitioning

>our

> > >insurance to pay for

> > >a visit there. My main hope has been to find where in the

>spectrum of PMG

> > >that 's

> > >condition lays, so that I can be realistic about his development

>and

> > >progress.

> > >

> > >Throughout our barrage of appointments the only doctor we have

>seen thus

> > >far with any

> > >experience with PMG has been the geneticist. We saw him right

>around

> > >'s first

> > >birthday and they order many tests that all came back normal, so

>they have

> > >found no

> > >underlying etiology for the PMG. Because he has seemed the only

>one with

> > >info on PMG, I

> > >was anxious for the 15 month follow up visit that we had

>yesterday. At

> > >that appointment,

> > >the Dr. told me pretty matter-of-factly that would not be

>high

> > >functioning and

> > >that he probably wouldn't progress much more than he has. I was

> > >devastated. We have

> > >received nothing but good reports from our therapists and EI

>teacher (who

> > >wrote in large

> > >letters across her most recent report " A lot of Progress!! " ).

>

> > >currently does not

> > >consistently roll over or roll over on his own. His head control

>and

> > >reaching abilities have

> > >improved greatly over the last few months. has never had

>feeding

> > >troubles. He

> > >eats stage 2 and 3 baby foods and many mashed table foods. He

>does not

> > >feed himself

> > >with his fingers, but has occasionally wrestled his spoon away

>from

> > >whomever is feeding

> > >him and has put it into his mouth to try to get off whatever is

>stuck to

> > >it. He sits in a

> > >tripod and tries to lift his arms to reach while sitting. He

>doesn't talk

> > >or say consonants,

> > >but he does try to " aaaah " back and forth with myself or my

>husband when we

> > >talk with

> > >him. loves to watch other kids and is very interested in

>what

> > >others are doing. He

> > >can pass objects back and forth between hands, can bang two

>objects and

> > >shakes his

> > >maracas. He can pick objects out of a bowl or container.

> > >

> > >My question for you the experts is, what are real expectations for

>a 15

> > >month old with

> > >PMG and his current accomplishments? I refuse to believe I am

>wasting my

> > >time with the

> > >therapy appts. and all the work we do with him at home. I

>understand that

> > >he probably

> > >won't go to college or play sports, but there has to be something

>in

> > >between. My

> > >husband believes that this Dr. made his prediction based only on

>seeing

> > > for 10

> > >minutes, not by working with for 10 minutes. I too put

>more weight

> > >in what his

> > >therapists say because they work with him more often and have

>developed a

> > >relationship

> > >with him. However, I feel I need some realistic advice based on

>his

> > >diagnosis as well and

> > >they do not look at diagnosis when working with the kids. I'll

>admit that

> > >is probably a

> > >good thing, but still would like to hear some input from the

>experts in

> > >this area - you the

> > >parents that work with these special kids everyday.

> > >

> > >I am sorry that this message was so long, but appreciate you

>taking the

> > >time to read about

> > >our story and I welcome any advice you may have for us at this

>time.

> > >Thank you and God bless all of the children and families dealing

>with PMG

> > >and other

> > >disabilities.

> > >

> > >

> >

> > _________________________________________________________________

> > Laugh, share and connect with Windows Live Messenger

> > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?

>href=http://imagine-msn.com/messenger/launch80/default.aspx?locale=en-

>us & source=hmtagline

> >

>

>

_________________________________________________________________

FREE online classifieds from Windows Live Expo – buy and sell with people

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[Guest guest]

I know what you mean. I stayed away for awhile because I was

overwhelmed. I still am, but I've come to realize that it helps to be

in touch with others in the same boat.

Love to you & the girls...

& my Angel Crystal

> > >

> > > Annette,

> > >

> > > All that any of us can do is try and give our little ones the

best

> >quality

> > > of like possible. To me that means getting all the therapies

and

> >attention

> > > possible. I will not have a doctor or therapist that does not

> >believe in

> > > Kennedy, if they have a bad additude they get kicked to the

curb.

> >NO ONE is

> > > going to tell me what my little girl will or will not do. She

use

> >to see a

> > > so called " developement specialist " but he was an idiot and

never

> >had

> > > anything good to say so I got rid of him quick.

> > >

> > >

> > >

> > > and Kennedy(7yrs.,pmg)

> > > http://www.geocities.com/kenjenjennings/

> > >

> > >

> > >

> > >

> > >

> > > >From: " luvthebuckii " <luvthebuckii@>

> > > >Reply-To: polymicrogyria

> > > >To: polymicrogyria

> > > >Subject: Hello

> > > >Date: Sat, 27 Jan 2007 13:35:23 -0000

> > > >

> > > >My son was diagnosised in early Oct. 2006 with PMG. He

is

> >almost 15

> > > >months old.

> > > >I found this group shortly after his diagnosis and have found

it

> >comforting

> > > >to know there

> > > >are others out there dealing with this diagnosis on a daily

basis

> >and

> > > >thriving which gives

> > > >me hope and also knowing there are others out there struggling

> >with this

> > > >diagnosis as it

> > > >allows me to know I am not alone. I want to thank all of you

for

> >sharing

> > > >your stories and

> > > >your information, as we have gotten little info on PMG from

any of

> >our

> > > >doctors. You are

> > > >truly amazing people.

> > > >

> > > >Here is our story. was born at 38 weeks after a normal,

> >uneventful

> > > >pregnancy. He

> > > >is a wonderful little guy who is very tolerant of most things

and

> >his

> > > >smiles are contagious.

> > > >I suspected something was wrong with his development at around

6

> >months.

> > > >Although his

> > > >ped. thought he was just a lazy baby, she made referrals based

on

> >my

> > > >concerns. We had a

> > > >head xray done that came back normally and then an MRI which

gave

> >us our

> > > >dreaded label

> > > >of PMG. I have searched for info on PMG and found very

little. I

> >have

> > > >been in contact with

> > > >the Walsh lab in Boston and am waiting to hear back from them.

> >Has anyone

> > > >been to the

> > > >brain malformation clinic in Boston? We are currently

petitioning

> >our

> > > >insurance to pay for

> > > >a visit there. My main hope has been to find where in the

> >spectrum of PMG

> > > >that 's

> > > >condition lays, so that I can be realistic about his

development

> >and

> > > >progress.

> > > >

> > > >Throughout our barrage of appointments the only doctor we have

> >seen thus

> > > >far with any

> > > >experience with PMG has been the geneticist. We saw him right

> >around

> > > >'s first

> > > >birthday and they order many tests that all came back normal,

so

> >they have

> > > >found no

> > > >underlying etiology for the PMG. Because he has seemed the

only

> >one with

> > > >info on PMG, I

> > > >was anxious for the 15 month follow up visit that we had

> >yesterday. At

> > > >that appointment,

> > > >the Dr. told me pretty matter-of-factly that would not

be

> >high

> > > >functioning and

> > > >that he probably wouldn't progress much more than he has. I

was

> > > >devastated. We have

> > > >received nothing but good reports from our therapists and EI

> >teacher (who

> > > >wrote in large

> > > >letters across her most recent report " A lot of Progress!! " ).

> >

> > > >currently does not

> > > >consistently roll over or roll over on his own. His head

control

> >and

> > > >reaching abilities have

> > > >improved greatly over the last few months. has never

had

> >feeding

> > > >troubles. He

> > > >eats stage 2 and 3 baby foods and many mashed table foods. He

> >does not

> > > >feed himself

> > > >with his fingers, but has occasionally wrestled his spoon away

> >from

> > > >whomever is feeding

> > > >him and has put it into his mouth to try to get off whatever is

> >stuck to

> > > >it. He sits in a

> > > >tripod and tries to lift his arms to reach while sitting. He

> >doesn't talk

> > > >or say consonants,

> > > >but he does try to " aaaah " back and forth with myself or my

> >husband when we

> > > >talk with

> > > >him. loves to watch other kids and is very interested

in

> >what

> > > >others are doing. He

> > > >can pass objects back and forth between hands, can bang two

> >objects and

> > > >shakes his

> > > >maracas. He can pick objects out of a bowl or container.

> > > >

> > > >My question for you the experts is, what are real expectations

for

> >a 15

> > > >month old with

> > > >PMG and his current accomplishments? I refuse to believe I am

> >wasting my

> > > >time with the

> > > >therapy appts. and all the work we do with him at home. I

> >understand that

> > > >he probably

> > > >won't go to college or play sports, but there has to be

something

> >in

> > > >between. My

> > > >husband believes that this Dr. made his prediction based only

on

> >seeing

> > > > for 10

> > > >minutes, not by working with for 10 minutes. I too put

> >more weight

> > > >in what his

> > > >therapists say because they work with him more often and have

> >developed a

> > > >relationship

> > > >with him. However, I feel I need some realistic advice based

on

> >his

> > > >diagnosis as well and

> > > >they do not look at diagnosis when working with the kids. I'll

> >admit that

> > > >is probably a

> > > >good thing, but still would like to hear some input from the

> >experts in

> > > >this area - you the

> > > >parents that work with these special kids everyday.

> > > >

> > > >I am sorry that this message was so long, but appreciate you

> >taking the

> > > >time to read about

> > > >our story and I welcome any advice you may have for us at this

> >time.

> > > >Thank you and God bless all of the children and families

dealing

> >with PMG

> > > >and other

> > > >disabilities.

> > > >

> > > >

> > >

> > >

_________________________________________________________________

> > > Laugh, share and connect with Windows Live Messenger

> > > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?

> >href=http://imagine-msn.com/messenger/launch80/default.aspx?

locale=en-

> >us & source=hmtagline

> > >

> >

> >

>

> _________________________________________________________________

> FREE online classifieds from Windows Live Expo – buy and sell with

people

> you know

> http://clk.atdmt.com/MSN/go/msnnkwex0010000001msn/direct/01/?

href=http://expo.live.com?s_cid=Hotmail_tagline_12/06

>

[Guest guest]

,

That is great news. What kind of meds was she on. We

are still trying to control my son Aiden's seizure,

but no luck so far. He is currently on topomax and

valporic acid (depakene). His nuero wants to decrease

his topomax because he thought it was interferring

with the valporic acid. Aiden's seizure seems to be

increasing though. Has anyone's little one experience

seizure where he would jerk inward, like he was doing

crunches and having the breath knock out of him? I'm

trying to see what kind of seizure this is so that I

can relay it to his neuro.

Any help would be great.

a, mom to Aiden (18 months) w/PMG

--- wrote:

> Annette,

>

> Do not listen to the doctors!!! Jenna's doctors all

> told us the same thing about Jenna but she has made

> tremendous progress and her neurologist was VERY

> surprised to see her doing what she is doing now.

>

> Jenna is 4 and a half years old. She walks, she

> talks (delayed but getting better), she eats normal

> food and is not tube fed. However she is not too

> good with utensils yet, she is making progress there

> too. She had seizures for awhile but they were

> controlled by medicine and is now seizure free. She

> is not potty trained but we believe that she will be

> some day. Basically, Jenna is a 2 year old in a 4

> year old body. Jenna is in O.T., P.T. and on a

> waiting list to enter speech therapy again. She

> attends special needs preschool 4 days a week and

> will go to special needs Kindergarten next school

> year.

>

> All of our kids are different. Some are more

> severely affected than others but to look at Jenna's

> MRI, you would think she would be a vegetable. That

> is what her Neurologist said to us. Dr Dobyns said

> over 3/4 of her brain was affected with PMG and he

> even gave us a grim outlook but Jenna has defied

> them all. Our kids have strong spirits...do not let

> the doctors dictate your sons future...allow God to

> do that.

>

> I hope that helps and good luck with all the

> challenges that lie ahead. We will be here for your

> support.

>

> and Jenna

> Hello

>

>

> My son was diagnosised in early Oct. 2006

> with PMG. He is almost 15 months old.

> I found this group shortly after his diagnosis and

> have found it comforting to know there

> are others out there dealing with this diagnosis

> on a daily basis and thriving which gives

> me hope and also knowing there are others out

> there struggling with this diagnosis as it

> allows me to know I am not alone. I want to thank

> all of you for sharing your stories and

> your information, as we have gotten little info on

> PMG from any of our doctors. You are

> truly amazing people.

>

> Here is our story. was born at 38 weeks

> after a normal, uneventful pregnancy. He

> is a wonderful little guy who is very tolerant of

> most things and his smiles are contagious.

> I suspected something was wrong with his

> development at around 6 months. Although his

> ped. thought he was just a lazy baby, she made

> referrals based on my concerns. We had a

> head xray done that came back normally and then an

> MRI which gave us our dreaded label

> of PMG. I have searched for info on PMG and found

> very little. I have been in contact with

> the Walsh lab in Boston and am waiting to hear

> back from them. Has anyone been to the

> brain malformation clinic in Boston? We are

> currently petitioning our insurance to pay for

> a visit there. My main hope has been to find where

> in the spectrum of PMG that 's

> condition lays, so that I can be realistic about

> his development and progress.

>

> Throughout our barrage of appointments the only

> doctor we have seen thus far with any

> experience with PMG has been the geneticist. We

> saw him right around 's first

> birthday and they order many tests that all came

> back normal, so they have found no

> underlying etiology for the PMG. Because he has

> seemed the only one with info on PMG, I

> was anxious for the 15 month follow up visit that

> we had yesterday. At that appointment,

> the Dr. told me pretty matter-of-factly that

> would not be high functioning and

> that he probably wouldn't progress much more than

> he has. I was devastated. We have

> received nothing but good reports from our

> therapists and EI teacher (who wrote in large

> letters across her most recent report " A lot of

> Progress!! " ). currently does not

> consistently roll over or roll over on his own.

> His head control and reaching abilities have

> improved greatly over the last few months.

> has never had feeding troubles. He

> eats stage 2 and 3 baby foods and many mashed

> table foods. He does not feed himself

> with his fingers, but has occasionally wrestled

> his spoon away from whomever is feeding

> him and has put it into his mouth to try to get

> off whatever is stuck to it. He sits in a

> tripod and tries to lift his arms to reach while

> sitting. He doesn't talk or say consonants,

> but he does try to " aaaah " back and forth with

> myself or my husband when we talk with

> him. loves to watch other kids and is very

> interested in what others are doing. He

> can pass objects back and forth between hands, can

> bang two objects and shakes his

> maracas. He can pick objects out of a bowl or

> container.

>

> My question for you the experts is, what are real

> expectations for a 15 month old with

> PMG and his current accomplishments? I refuse to

> believe I am wasting my time with the

> therapy appts. and all the work we do with him at

> home. I understand that he probably

> won't go to college or play sports, but there has

> to be something in between. My

> husband believes that this Dr. made his prediction

> based only on seeing for 10

> minutes, not by working with for 10

> minutes. I too put more weight in what his

> therapists say because they work with him more

> often and have developed a relationship

> with him. However, I feel I need some realistic

> advice based on his diagnosis as well and

> they do not look at diagnosis when working with

> the kids. I'll admit that is probably a

> good thing, but still would like to hear some

> input from the experts in this area - you the

> parents that work with these special kids

> everyday.

>

> I am sorry that this message was so long, but

> appreciate you taking the time to read about

> our story and I welcome any advice you may have

> for us at this time.

> Thank you and God bless all of the children and

> families dealing with PMG and other

> disabilities.

> Annette

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

a

Savannah was in a Topamax study and was removed due to side effects (irregular

bowels and no decrease in seizures) Do those seizures favor one side? Savannah

would jerk inward and to the left. She was given two doses of Cerebex and they

slowed down. We are now weining her from the Topamax and introducing Tegretal.

Sounds like your little guy is aspirating during seizures. Not uncommon for our

little bundles of joy but I would get a swallow study done to make sure he does

not have a problem with reflux (usually a problem with aspirators). You'd be

surprised at how some things are precursers for others.

a Tanaka wrote:

,

That is great news. What kind of meds was she on. We

are still trying to control my son Aiden's seizure,

but no luck so far. He is currently on topomax and

valporic acid (depakene). His nuero wants to decrease

his topomax because he thought it was interferring

with the valporic acid. Aiden's seizure seems to be

increasing though. Has anyone's little one experience

seizure where he would jerk inward, like he was doing

crunches and having the breath knock out of him? I'm

trying to see what kind of seizure this is so that I

can relay it to his neuro.

Any help would be great.

a, mom to Aiden (18 months) w/PMG

--- wrote:

> Annette,

>

> Do not listen to the doctors!!! Jenna's doctors all

> told us the same thing about Jenna but she has made

> tremendous progress and her neurologist was VERY

> surprised to see her doing what she is doing now.

>

> Jenna is 4 and a half years old. She walks, she

> talks (delayed but getting better), she eats normal

> food and is not tube fed. However she is not too

> good with utensils yet, she is making progress there

> too. She had seizures for awhile but they were

> controlled by medicine and is now seizure free. She

> is not potty trained but we believe that she will be

> some day. Basically, Jenna is a 2 year old in a 4

> year old body. Jenna is in O.T., P.T. and on a

> waiting list to enter speech therapy again. She

> attends special needs preschool 4 days a week and

> will go to special needs Kindergarten next school

> year.

>

> All of our kids are different. Some are more

> severely affected than others but to look at Jenna's

> MRI, you would think she would be a vegetable. That

> is what her Neurologist said to us. Dr Dobyns said

> over 3/4 of her brain was affected with PMG and he

> even gave us a grim outlook but Jenna has defied

> them all. Our kids have strong spirits...do not let

> the doctors dictate your sons future...allow God to

> do that.

>

> I hope that helps and good luck with all the

> challenges that lie ahead. We will be here for your

> support.

>

> and Jenna

> Hello

>

>

> My son was diagnosised in early Oct. 2006

> with PMG. He is almost 15 months old.

> I found this group shortly after his diagnosis and

> have found it comforting to know there

> are others out there dealing with this diagnosis

> on a daily basis and thriving which gives

> me hope and also knowing there are others out

> there struggling with this diagnosis as it

> allows me to know I am not alone. I want to thank

> all of you for sharing your stories and

> your information, as we have gotten little info on

> PMG from any of our doctors. You are

> truly amazing people.

>

> Here is our story. was born at 38 weeks

> after a normal, uneventful pregnancy. He

> is a wonderful little guy who is very tolerant of

> most things and his smiles are contagious.

> I suspected something was wrong with his

> development at around 6 months. Although his

> ped. thought he was just a lazy baby, she made

> referrals based on my concerns. We had a

> head xray done that came back normally and then an

> MRI which gave us our dreaded label

> of PMG. I have searched for info on PMG and found

> very little. I have been in contact with

> the Walsh lab in Boston and am waiting to hear

> back from them. Has anyone been to the

> brain malformation clinic in Boston? We are

> currently petitioning our insurance to pay for

> a visit there. My main hope has been to find where

> in the spectrum of PMG that 's

> condition lays, so that I can be realistic about

> his development and progress.

>

> Throughout our barrage of appointments the only

> doctor we have seen thus far with any

> experience with PMG has been the geneticist. We

> saw him right around 's first

> birthday and they order many tests that all came

> back normal, so they have found no

> underlying etiology for the PMG. Because he has

> seemed the only one with info on PMG, I

> was anxious for the 15 month follow up visit that

> we had yesterday. At that appointment,

> the Dr. told me pretty matter-of-factly that

> would not be high functioning and

> that he probably wouldn't progress much more than

> he has. I was devastated. We have

> received nothing but good reports from our

> therapists and EI teacher (who wrote in large

> letters across her most recent report " A lot of

> Progress!! " ). currently does not

> consistently roll over or roll over on his own.

> His head control and reaching abilities have

> improved greatly over the last few months.

> has never had feeding troubles. He

> eats stage 2 and 3 baby foods and many mashed

> table foods. He does not feed himself

> with his fingers, but has occasionally wrestled

> his spoon away from whomever is feeding

> him and has put it into his mouth to try to get

> off whatever is stuck to it. He sits in a

> tripod and tries to lift his arms to reach while

> sitting. He doesn't talk or say consonants,

> but he does try to " aaaah " back and forth with

> myself or my husband when we talk with

> him. loves to watch other kids and is very

> interested in what others are doing. He

> can pass objects back and forth between hands, can

> bang two objects and shakes his

> maracas. He can pick objects out of a bowl or

> container.

>

> My question for you the experts is, what are real

> expectations for a 15 month old with

> PMG and his current accomplishments? I refuse to

> believe I am wasting my time with the

> therapy appts. and all the work we do with him at

> home. I understand that he probably

> won't go to college or play sports, but there has

> to be something in between. My

> husband believes that this Dr. made his prediction

> based only on seeing for 10

> minutes, not by working with for 10

> minutes. I too put more weight in what his

> therapists say because they work with him more

> often and have developed a relationship

> with him. However, I feel I need some realistic

> advice based on his diagnosis as well and

> they do not look at diagnosis when working with

> the kids. I'll admit that is probably a

> good thing, but still would like to hear some

> input from the experts in this area - you the

> parents that work with these special kids

> everyday.

>

> I am sorry that this message was so long, but

> appreciate you taking the time to read about

> our story and I welcome any advice you may have

> for us at this time.

> Thank you and God bless all of the children and

> families dealing with PMG and other

> disabilities.

> Annette

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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

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[Guest guest]

hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have

two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

[Guest guest]

I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses.

Re: Hello

hi,

We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake....

juliemusicalpurplefish <jennydixon (DOT) net> wrote:

I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Fine... Dixon wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also

cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

Hi all, I've been out of the loop for waaay too long and need to get back to the group because I know I get good support here. I've been crazy busy with college classes and the grandbaby. I go back to school in a couple of weeks so I'm going to get busy again. I've been super lazy this summer and didn't mess with the computer much. This is my third major flareup along with several little ones with my asthma and I should have posted a long time ago for the support. I'm on prednisone again and this time it's really affected my diabetes more. I have started trying to eat better and lose some weight to help with both the asthma and diabetes. , was only trying to help. I do drink more liquids when I have flareups. It helps to thin the secretions and makes it easier to get them up. Most of us find that it helps, so that's why it's suggested that someone drink lots of liquids, preferably water. Stay indoors as much

as you can if there's a lot of air pollution or you live in a hot area like I do right now. It's been in the 90s here in Tennessee, with a heat index of up to 100+. The humidity keeps the air stale and ozone loaded. We hope and pray for rain soon. Take care all, julie ann martin wrote: Fine... Dixon <jennydixon (DOT) net> wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for

us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you!

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[Guest guest]

Dear , Tnx...lol...well im not that familiar with all the illnesses that asthma cud bring..but as a 26 years suffering from this I dont think I know less..compared to an 8 mos experienced.Im being offended..well cancers are so sentitive and I pity myself for being one...God BlessBill and Canter wrote: Hi all, I've been out of the loop for waaay too long and need to get back to the group because I know I get good support here. I've been crazy

busy with college classes and the grandbaby. I go back to school in a couple of weeks so I'm going to get busy again. I've been super lazy this summer and didn't mess with the computer much. This is my third major flareup along with several little ones with my asthma and I should have posted a long time ago for the support. I'm on prednisone again and this time it's really affected my diabetes more. I have started trying to eat better and lose some weight to help with both the asthma and diabetes. , was only trying to help. I do drink more liquids when I have flareups. It helps to thin the secretions and makes it easier to get them up. Most of us find that it helps, so that's why it's suggested that someone drink lots of liquids, preferably water. Stay indoors as much as you can if there's a lot of air pollution or you live in a hot area like I do right now. It's been in the 90s here in Tennessee,

with a heat index of up to 100+. The humidity keeps the air stale and ozone loaded. We hope and pray for rain soon. Take care all, julie ann martin <julie_bernardo18> wrote: Fine... Dixon <jennydixon (DOT) net> wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I

have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who

knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

[Guest guest]

I don't just have asthma I have SEVERAL extremely serious lifethreatening illnesses of which the details are NONE of your business

Re: Hello

hi,

We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake....

juliemusicalpurplefish <jennydixon (DOT) net> wrote:

I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you!

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

[Guest guest]

I have been suffering with asthma for 50 years and one thing I know is don't try for disability because Social Security Disability will not give it to you for anything in the world. Trust me I have been trying since 1993 or 94.julie ann martin wrote: Dear , Tnx...lol...well im not that familiar with all the illnesses that asthma cud bring..but as a 26 years suffering from this I dont think I know less..compared to

an 8 mos experienced.Im being offended..well cancers are so sentitive and I pity myself for being one...God BlessBill and Canter <cindyj4652> wrote: Hi all, I've been out of the loop for waaay too long and need to get back to the group because I know I get good support here. I've been crazy busy with college classes and the grandbaby. I go back to school in a couple of weeks so I'm going to get busy again. I've been super lazy this summer and didn't mess with the computer much. This is my third major flareup along with several little ones with my asthma and I should have posted a long time ago for the support. I'm on prednisone again and this time it's really affected my diabetes more. I have started trying to eat better and lose some weight to help with both the

asthma and diabetes. , was only trying to help. I do drink more liquids when I have flareups. It helps to thin the secretions and makes it easier to get them up. Most of us find that it helps, so that's why it's suggested that someone drink lots of liquids, preferably water. Stay indoors as much as you can if there's a lot of air pollution or you live in a hot area like I do right now. It's been in the 90s here in Tennessee, with a heat index of up to 100+. The humidity keeps the air stale and ozone loaded. We hope and pray for rain soon. Take care all, julie ann martin <julie_bernardo18> wrote: Fine... Dixon <jennydixon (DOT) net> wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've experienced...its very hard

to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

I have been suffering with asthma for 50 years and one thing I know is don't try for disability because Social Security Disability will not give it to you for anything in the world. Trust me I have been trying since 1993 or 94. I died three times and still they won't let me have it. Plus I have a doctor who wil not send any paper work to social security to help me get disability.julie ann martin wrote: Dear , Tnx...lol...well im not that familiar with all the illnesses that asthma cud bring..but as a 26 years suffering from this I dont think I know less..compared to an 8 mos experienced.Im being offended..well cancers are so sentitive and I pity myself for being one...God BlessBill and Canter <cindyj4652> wrote: Hi all, I've been out of the loop for waaay too long and need to get back to the group because I know I get good support here. I've been crazy busy with college classes and the grandbaby. I go back to school in a couple of weeks so I'm going to get busy again. I've been super lazy this summer and didn't mess with the computer much. This is my third major flareup along with several little ones with my asthma and I should have posted a

long time ago for the support. I'm on prednisone again and this time it's really affected my diabetes more. I have started trying to eat better and lose some weight to help with both the asthma and diabetes. , was only trying to help. I do drink more liquids when I have flareups. It helps to thin the secretions and makes it easier to get them up. Most of us find that it helps, so that's why it's suggested that someone drink lots of liquids, preferably water. Stay indoors as much as you can if there's a lot of air pollution or you live in a hot area like I do right now. It's been in the 90s here in Tennessee, with a heat index of up to 100+. The humidity keeps the air stale and ozone loaded. We hope and pray for rain soon. Take care all, julie ann martin <julie_bernardo18> wrote: Fine... Dixon <jennydixon (DOT) net> wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get

great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

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[Guest guest]

please dont fight this dosent help asthmatics every one has several things wrong josie Dixon wrote: I don't just have asthma I have SEVERAL extremely serious lifethreatening illnesses of which the details are NONE of your business Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel

answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Ok, but you don't have to be so rude. Asthma and diabetes can BOTH be extremely life threatening diseases and must be taken care of. If you don't want to talk about those other ailments, ok. However, you should try to understand that the group is trying to help. Dixon wrote: I don't just have asthma I have SEVERAL extremely serious lifethreatening illnesses of which the details are NONE of your business Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice

proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. God bless you!

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[Guest guest]

Keep trying. I had to fight for 2 years for mine. I wasn't diagnosed with diabetes until 2005, but I've had disability since 1994. I also have back and knee problems which won't let me stand on a job for hours on end. I go to college so, hopefully, I can find a decent job at a desk which won't compound everything. Don't give up. You have to show the SSA that some illnesses, like asthma, can't be taken lightly on some jobs. You would not be able to work in dusty, dirty environments or around fumes and such things. I take it you're older, and finding a job is harder with age. My hubby is 55 and if he lost his job now, he'd have a hard time finding another. He also has Tourettes Syndrome, which would compound the problem. As I said before, don't give up. Bourg wrote: I have been suffering with asthma for 50 years and one thing I know is don't try for disability because Social Security Disability will not give it to you for anything in the world. Trust me I have been trying since 1993 or 94.julie ann martin <julie_bernardo18> wrote: Dear , Tnx...lol...well im not that familiar with all the illnesses that asthma cud bring..but as a 26 years suffering from this I dont think I know

less..compared to an 8 mos experienced.Im being offended..well cancers are so sentitive and I pity myself for being one...God BlessBill and Canter <cindyj4652> wrote: Hi all, I've been out of the loop for waaay too long and need to get back to the group because I know I get good support here. I've been crazy busy with college classes and the grandbaby. I go back to school in a couple of weeks so I'm going to get busy again. I've been super lazy this summer and didn't mess with the computer much. This is my third major flareup along with several little ones with my asthma and I should have posted a long time ago for the support. I'm on prednisone again and this time it's really affected my diabetes more. I have started trying to eat better and lose some weight to

help with both the asthma and diabetes. , was only trying to help. I do drink more liquids when I have flareups. It helps to thin the secretions and makes it easier to get them up. Most of us find that it helps, so that's why it's suggested that someone drink lots of liquids, preferably water. Stay indoors as much as you can if there's a lot of air pollution or you live in a hot area like I do right now. It's been in the 90s here in Tennessee, with a heat index of up to 100+. The humidity keeps the air stale and ozone loaded. We hope and pray for rain soon. Take care all, julie ann martin <julie_bernardo18> wrote: Fine... Dixon <jennydixon (DOT) net> wrote: I don't need to double my liquid intake. Please don't make assumptions on what I need to do when you dont know anything about my illnesses. Re: Hello hi, We really can feel what u've

experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an

Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Shape Yahoo! in your own image. Join our Network Research Panel today! God bless you!

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

That is the confuseing part of SSA. I was just turn down again because they told me that I don't have enough work credit to get disability. I have worked 14 and 1/8 years can you please tellme how many work credit do you suppose to have. Now on the other hand my sister work a couple of years at a nursrey school at a church and my younger brother never worked and they never asked or looked to how much work credit they have if any. Plus both of them went all the way thru High School and my younger brother went to a bussiness college and all I went to is up to 2nd grade in reg school and then special education and St Agnes Evaluation Center for kids with disabilities. And I can't get a darn thing from SSA. Bourg McCollum wrote: This may be a stupid question, but Is disability only paid if you worked and paid into the system over the years??? Re: Hello hi, We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper

breathing...it could help a lot and double your liquid intake.... juliemusicalpurplefish <jennydixon (DOT) net> wrote: I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you! Need a vacation? Get great deals to amazing places on Yahoo! Travel. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Shape Yahoo! in your own image. Join our Network Research Panel today! God bless you! Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.11.19/956 - Release Date: 8/16/07 9:48 AM

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

This may be a stupid question, but Is disability only paid if you worked and paid into the system over the years???

Re: Hello

hi,

We really can feel what u've experienced...its very hard to breathe for us...just continue your medication...the best that we can give you..practice proper breathing...it could help a lot and double your liquid intake....

juliemusicalpurplefish <jennydixon (DOT) net> wrote:

I am new here. I have had asthma for 8 months now. I am on symbicort and salbutamol- also cetirizine.My normal pf is 350. at the moment on a night it drops to 290. I have two five day course of prednisolone in the last four weeks due to a severe lung infection.xxx

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. God bless you!

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

Shape Yahoo! in your own image. Join our Network Research Panel today! God bless you!

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

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[Guest guest]

Dear Ashish,

Dhananjay Deoskar from my batch ('84) should be in NY - I don't know if he is

still there. You could contact him at jaydeoskar@....

Take care, and have a great trip,

Prabha

Ashish Bhalla wrote:

hi

is there any one at New York or Philadelphia from

MGIMS, i would like to get in touch when i am there in

November first week.

Thanks

Ashish Bhalla

__________________________________________________________

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[Guest guest]

Hi Ashish and Prabha,

I lived in NY for about 5 years but moved to CLeveland

Ohio in June 2006.

Chetan Dhamne was closest to NY-he was located in

Philadelphia but I believe he moved to Chicago.

Sorry about that Ashish-but you are welcome to the

midwest.

Dhananjay Deoskar (84)

--- Prabha Desikan wrote:

> Dear Ashish,

>

> Dhananjay Deoskar from my batch ('84) should be in

> NY - I don't know if he is still there. You could

> contact him at jaydeoskar@....

>

> Take care, and have a great trip,

>

> Prabha

>

>

> Ashish Bhalla wrote:

> hi

> is there any one at New York or Philadelphia from

> MGIMS, i would like to get in touch when i am there

> in

> November first week.

>

> Thanks

>

> Ashish Bhalla

>

>

__________________________________________________________

> Fussy? Opinionated? Impossible to please? Perfect.

> Join Yahoo!'s user panel and lay it on us.

>

http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

>

>

>

>

>

>

>

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

> Yahoo! oneSearch: Finally, mobile search that gives

> answers, not web links.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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[Guest guest]

Dear Ruchi,

I can understand your plight and that you need help. You should have tried

losing the family on the airport itself. But never mind. You can always lose

them in some of the large malls or gardens that Hyderabad has.

My sympathies.

Kishore Shah 1974

Hello

> Hello Friends,

> I am Ruchi Dhall 1987 batch and have relocated to Hyderabad with my

> family. Is there someone who can help.

>

> Thanks

[Guest guest]

Hi Ruchi,

I am Rajiv Gambhir. I am presently in Hyderabad for

last 6 years. But I am leaving soon for Denmark this

30th. You can contact me at 09885079527 before 29th

and i shall try and help as much possible.

Rajiv

________________________________________________________________________________\

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[Guest guest]

Man Kishore you are funny...Good luck Ruchi!

Ashish

Shah wrote:

Dear Ruchi,

I can understand your plight and that you need help. You should have tried

losing the family on the airport itself. But never mind. You can always lose

them in some of the large malls or gardens that Hyderabad has.

My sympathies.

Kishore Shah 1974

Hello

> Hello Friends,

> I am Ruchi Dhall 1987 batch and have relocated to Hyderabad with my

> family. Is there someone who can help.

>

> Thanks

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

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[Guest guest]

Hi Maggie, This is ...I live in Connecticut. I have a little boy (age 10)

with PMG. We took him when he was 4 years old to see Dr. Dobyns in

Chicago... he is an expert in PMG and neuronal migration disorders...and he

provided so much information.

's seizures started at age 4...and we had a hard time controlling them

for the first few years, and still deal with recurrence. But over time, with a

really good neurology team... you can sometimes get them regulated.

doesnt have a VNS but I do know several kids that do...and it helps.

Welcome to the group. We are really from all over the world in here....but

share many of the same questions and concerns.

We are working on taking back to Dobyns this summer possibly....because

so much has changed and we have so many concerns too.

Good luck... glad to meet you.

H. Mom to , age 10, Sandy Hook, CT... has bi lateral

persylvian diffuse PMG, 80% of his brain is affected, he is non verbal,

seizures, extreme stomach problems, aspiration risks, g tube fed, has had double

hip osteotomy and hamstring lengthening surgery, nissen fundoplication, and

countless tests and procedures. He is sweet, attentive, loves to snuggle,

happy, giggles for hours, and does well in a HART walker, stander, and

absolutely totally loves fiber optic lights, and sensory/tactile toys. AND

swimming....love the water like crazy.

is just magic in my eyes.

Maggie wrote:

Wow, I'm so glad to have found this support group.

Just wanted to intro myself to everyone: I'm a single mom of 2. My

son, Marcus is 6 years old and has been diagnosed with PMG and BPP. He

is severe seizures many times a day and it's so frustrating. I have a

daughter that's 9 who helps out quite a bit.

I'm new to this and don't know much about PMG and BPP so any help

would be great.

I'm in Ontario Canada and the Neurologist is suggesting a VNS for

Marcus. Does anyone have any thoughts on this?

The question I get asked all the time about Marcus is " what's the

prognoses " and I don't know how to answer this.

You have no idea how happy I am to have found this site and have

people that know the struggles I'm going through.

Maggie

In the middle of a difficulty lies opportunity.

Einstein, Albert

[Guest guest]

Hi, Let me just start by saying welcome to the group! i'm sure you'll find it a

wealth of information just like us all, We all know how you feel! and feel each

others pain, simple because it's something that's so close to all of us's

hearts.

We are too struggling with the decision as wether or not to have the vns....it

is a very big decision! and one we need to keep researching until we are totally

happy that we have all the information available to make a (very) well informed

decision. How is Marcus's talking ect? can he tell you what he thinks? my

son(morgan) doesn't communicate very well and cannot give his opinion, so(oh

joy) another decision left to us!

have you tried looking on the web? there is alot of sites on here.

Again welcome and good luck with what ever decision you make and don't forget to

keep us updated with how it's all going.

Hugs to all our angels

mum to 7yrs pmg and lissencephaly

To: polymicrogyria@...: maggie01@...: Thu, 31 Jan

2008 14:20:53 +0000Subject: hello

Wow, I'm so glad to have found this support group.Just wanted to intro myself to

everyone: I'm a single mom of 2. Myson, Marcus is 6 years old and has been

diagnosed with PMG and BPP. Heis severe seizures many times a day and it's so

frustrating. I have adaughter that's 9 who helps out quite a bit.I'm new to this

and don't know much about PMG and BPP so any helpwould be great.I'm in Ontario

Canada and the Neurologist is suggesting a VNS forMarcus. Does anyone have any

thoughts on this?The question I get asked all the time about Marcus is " what's

theprognoses " and I don't know how to answer this.You have no idea how happy I

am to have found this site and havepeople that know the struggles I'm going

through.Maggie

_________________________________________________________________

Telly addicts unite!

http://www.searchgamesbox.com/tvtown.shtml

[Guest guest]

Welcome, Maggie.

My 12 yr old son has moderate BPNH-PMG. We have been struggling with seizures

since he was 6 months old. They are not as severe as many here on the list but

still affects our lives very much. We too struggle with should we go ahead with

the VNS or not. He has been on 7 different seizure meds so far in his life.

Right now he is on Trileptal and Lamictal but continues having seizures(that we

see) every 7-10 days. New neuro is admitting him for a 5 day video EEG in

March. We pretty much know seizure meds are not working. Next consideration is

KETO diet, VNS or surgery. I spoke to Dr. Dobyns about surgery and he gave me

the feeling that it wasn't such a good idea with the BPNH-PMG. He asked to

speak to neuro IF we decided to go this route. Right now, we do not believe his

seizures are severe enough to warrant surgery.

Anyway, just wanted to say hello and welcome.

Donna(mom to Trevor 12 yrs old BPNH-PMG, seizures, Septo Optic Dyplasia

Syndrome, Hydrocheylus(shunted), Cortical Visual Impairment, moderate cognitive

impairment

Rockville, land