Re: New Member

Report post · November 14, 2001

Welcome and family,

Our almost 10 month old son also has bilateral perisyvian

polymicrogyria......BPP for short. You will find many people

here with many ideas, stories, helpful hints, and a shoulder if you need it. We

have learned sooo much info here, it

really helped us come to terms with our sons disability and how to deal with it.

If we can be of help just let us know

what you need, we are here for you. Please write again soon an tell us more

about and the rest of your family.

We are.....

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still of 10 minutes,

and Carver almost 10 months with BPP, the happiest little guy in the world with

the bluest eyes EVER!

Hi,

our 6 month old son was just diagnosed with bilateral Polymicrogyria

post MRI.

we are trying to hook up with any support group which could help us through

this.

My email address is lndrn@...

Conce, Casey, &

Report post · November 14, 2001

Welcome and family,

Our almost 10 month old son also has bilateral perisyvian

polymicrogyria......BPP for short. You will find many people

here with many ideas, stories, helpful hints, and a shoulder if you need it. We

have learned sooo much info here, it

really helped us come to terms with our sons disability and how to deal with it.

If we can be of help just let us know

what you need, we are here for you. Please write again soon an tell us more

about and the rest of your family.

We are.....

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still of 10 minutes,

and Carver almost 10 months with BPP, the happiest little guy in the world with

the bluest eyes EVER!

Hi,

our 6 month old son was just diagnosed with bilateral Polymicrogyria

post MRI.

we are trying to hook up with any support group which could help us through

this.

My email address is lndrn@...

Conce, Casey, &

Report post · November 17, 2001

Please tell us about your nephew age, and delays good things and bad are

welcome and any question can be answered by someone here. Welcome.

Give your nephew hugs and kisses form the family

Jeni mommy to Dylan 19 months old

Lexington VA

Report post · November 17, 2001

Please tell us about your nephew age, and delays good things and bad are

welcome and any question can be answered by someone here. Welcome.

Give your nephew hugs and kisses form the family

Jeni mommy to Dylan 19 months old

Lexington VA

Report post · November 17, 2001

Please tell us about your nephew age, and delays good things and bad are

welcome and any question can be answered by someone here. Welcome.

Give your nephew hugs and kisses form the family

Jeni mommy to Dylan 19 months old

Lexington VA

Report post · January 3, 2002

Hello Judy and welcome to the group.

Our daughter was 4 months old when PMG was diagnosed (she will be 5yrs old in a

couple of weeks). It is wide spread and has caused multiple disabilities, but

she is a happy and delightful child with the most amazing smile. She has CP and

vision impairment, as well as seizures and developmental delays and, although

life is quite difficult at times, we have settled into a routine which works

well for us. Her curls and smile have a charming effect on people and she

wriggles her way into people's hearts very quickly.

We look forward to supporting you here on your journey with and Daphne,

and hope to hear more about soon.

Regards

(Hannah's mum, Australia)

----- Original Message -----

My name is Judy. My great niece has just been diagnosist with

polymicrogyria, she three years old.

In my search for more info on the topic I found your website. I was hoping

the group could help me with information, understanding, and help for my

niece, Daphne.

Report post · January 4, 2002

Hi ,

Welcome. My 7 month old also has PMG. His neurologist

offices at Texas Childrens Hospital. He is wonderful.

His name is Dr. and he has a particular

interest in PMG. My email is LSchott@.... If

you live in the Houston area, email me and maybe we

can talk. You'll find that each child is unique. Take

care.

Have the neurologist review the MRI. Don't rely on the

radiologist report as they can be wrong since it is

such a rare thing. Is he your first child?

--- Higgins wrote:

> Hello,

>

> My 14 month old was diagnosed with PMG last month.

> Along with Lateral

> Sulcus. My husband and I don't know much about this

> diagnosis at all since

> we just found out. We are to meet with a

> neurologist sometime this month,

> but likely we won't since the waiting list at Texas

> Children's is long. I

> wasn't really referred to you at all I just happened

> to stumble on to the

> site by searching for PMG. Thanks for your reply.

>

Report post · January 4, 2002

Hi ,

Welcome to our group. I'd say that this is the most caring group that I belong

to, and everyone here has been so thoughtful and supportive. Hope we can help

you along your journey with your child's condition, and look forward to your

contributions here. Ask lots of questions and we try our best to answer them.

PMG causes a wide variety of issues, and they range from mild to severe, but

each child is unique in the way they present, and it is often a gradual process

of discovering how your child is affected.

Our third child, Hannah, is nearly 5yo, and was diagnosed at 4 months by MRI

scan, when seizures remained uncontrolled from soon after birth. Her PMG is wide

spread and has caused the issues seen in my signature line. She enjoys sounds

and movement and responds very well to tactile input. Her smile is deadly and

she melts hearts with it in an instant.

Please tell us more about your child - name, age, symptoms, treatments etc

Looking forward to hearing from you.

– from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, variety

of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic

quad.CP and orthopedic issues that go with it, non-mobile, cortical vision

impairment, possible conductive hearing loss, swallowing and respiratory issues,

non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant

smile)

----- Original Message -----

My 14 month old was diagnosed with PMG last month. Along with Lateral

Sulcus. My husband and I don't know much about this diagnosis at all since

we just found out. We are to meet with a neurologist sometime this month,

but likely we won't since the waiting list at Texas Children's is long. I

wasn't really referred to you at all I just happened to stumble on to the

site by searching for PMG. Thanks for your reply.

Report post · January 5, 2002

Re: New Member

> Hello Judy and welcome to the group.

>

> Our daughter was 4 months old when PMG was diagnosed (she will be 5yrs old

in a couple of weeks). It is wide spread and has caused multiple

disabilities, but she is a happy and delightful child with the most amazing

smile. She has CP and vision impairment, as well as seizures and

developmental delays and, although life is quite difficult at times, we have

settled into a routine which works well for us. Her curls and smile have a

charming effect on people and she wriggles her way into people's hearts very

quickly.

>

> We look forward to supporting you here on your journey with and

Daphne, and hope to hear more about soon.

> Regards

> (Hannah's mum, Australia)

> ----- Original Message -----

> My name is Judy. My great niece has just been diagnosist with

> polymicrogyria, she three years old.

> In my search for more info on the topic I found your website. I was

hoping

> the group could help me with information, understanding, and help for my

> niece, Daphne.

>

Report post · January 5, 2002

----- Original Message -----

From: josepe

> When is Hannahs Birthday,my son will be two in a few weeks.a mom

to

a,

Hannah's birthday is on 26th January.

The 26th Jan is a national holiday here in Australia, to celebrate Federation.

The funny thing is that our son was born on Christmas Eve, and our older

daughter's birthday falls at Easter every few years.

With my birthday on 20th Jan, Hannah was almost a birthday present to me, and we

sometimes have a joint celebration.

When is 's? I'm sure we'll get a reminder from the list.

(Hannah's mum, Australia)

Report post · January 6, 2002

Re: New Member

> ----- Original Message -----

> From: josepe

> > When is Hannahs Birthday,my son will be two in a few weeks.a mom

> to

>

> a,

> Hannah's birthday is on 26th January.

> The 26th Jan is a national holiday here in Australia, to celebrate

Federation.

> The funny thing is that our son was born on Christmas Eve, and our older

daughter's birthday falls at Easter every few years.

> With my birthday on 20th Jan, Hannah was almost a birthday present to me,

and we sometimes have a joint celebration.

>

> When is 's? I'm sure we'll get a reminder from the list.

> (Hannah's mum, Australia)

>

Report post · January 6, 2002

Re: New Member

> ----- Original Message -----

> From: josepe

> > When is Hannahs Birthday,my son will be two in a few weeks.a mom

> to

>

> a,

> Hannah's birthday is on 26th January.

> The 26th Jan is a national holiday here in Australia, to celebrate

Federation.

> The funny thing is that our son was born on Christmas Eve, and our older

daughter's birthday falls at Easter every few years.

> With my birthday on 20th Jan, Hannah was almost a birthday present to me,

and we sometimes have a joint celebration.

>

> When is 's? I'm sure we'll get a reminder from the list.

> (Hannah's mum, Australia)

>

Report post · January 6, 2002

Re: New Member

> ----- Original Message -----

> From: josepe

> > When is Hannahs Birthday,my son will be two in a few weeks.a mom

> to

>

> a,

> Hannah's birthday is on 26th January.

> The 26th Jan is a national holiday here in Australia, to celebrate

Federation.

> The funny thing is that our son was born on Christmas Eve, and our older

daughter's birthday falls at Easter every few years.

> With my birthday on 20th Jan, Hannah was almost a birthday present to me,

and we sometimes have a joint celebration.

>

> When is 's? I'm sure we'll get a reminder from the list.

> (Hannah's mum, Australia)

>

Report post · January 6, 2002

In a message dated 1/6/02 4:17:37 PM Central Standard Time, josepe@...

writes:

> ..

>

I'm so glad to hear that, keep us up to date on that boy!

The family of Strawberry Plains, TN.

<A

HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\

</A>

Report post · January 7, 2002

a, I was pleased to hear the tear duct procedure was a success, and will

remember in our prayers on the 11th.

In your reply to Jim I think you meant to say how old would be on the 27th

but the age was missing, so how old will he be?

Cheers

Hannah's mum, Australia)

----- Original Message -----

From: josepe

KAREN, jOEYS BIRTHDAY IS ON THE 27,OF JANUARY.The funny thing is that my

daughter was almost a birthday present for me,my birthday is April 8,and

that is when I almost had her but she decided to wait until the 9th..

had his tear duct unblocked friday and everything went fine.He goes for to

have his testicales pulled down on on the 11th at 9;15.a mom to ph

Report post · January 9, 2002

Hi Marie and welcome to the group

Hope you get the info you're looking for in time for the IVF.

Regarding the CMV and PMG, I understand that the CMV is only a

problem if you contract the virus, for the first time, during

pregnancy. Just being a carrier is not a problem. It's the initial

outbreak that causes PMG. I'm pretty sure about this but check with

the experts for confirmation.

Good luck and keep in touch, ('s mom)

Report post · January 9, 2002

Hi Marie and welcome to the group

Hope you get the info you're looking for in time for the IVF.

Regarding the CMV and PMG, I understand that the CMV is only a

problem if you contract the virus, for the first time, during

pregnancy. Just being a carrier is not a problem. It's the initial

outbreak that causes PMG. I'm pretty sure about this but check with

the experts for confirmation.

Good luck and keep in touch, ('s mom)

Report post · January 9, 2002

Hi Marie and welcome to the group

Hope you get the info you're looking for in time for the IVF.

Regarding the CMV and PMG, I understand that the CMV is only a

problem if you contract the virus, for the first time, during

pregnancy. Just being a carrier is not a problem. It's the initial

outbreak that causes PMG. I'm pretty sure about this but check with

the experts for confirmation.

Good luck and keep in touch, ('s mom)

Report post · January 9, 2002

Hi,

Could someone tell me what CMV infection is? It is the first I heard about

this and I have been to many doctors, genetic testing etc. I have an appt at

Mt. Siani with Dr Sybyell Wallas on the 16th of this month. They say they

can answer all my questions ?! We'll see.

Thanks,

('s Mom)

Report post · January 9, 2002

Hi,

Could someone tell me what CMV infection is? It is the first I heard about

this and I have been to many doctors, genetic testing etc. I have an appt at

Mt. Siani with Dr Sybyell Wallas on the 16th of this month. They say they

can answer all my questions ?! We'll see.

Thanks,

('s Mom)

Report post · January 9, 2002

Hi,

Could someone tell me what CMV infection is? It is the first I heard about

this and I have been to many doctors, genetic testing etc. I have an appt at

Mt. Siani with Dr Sybyell Wallas on the 16th of this month. They say they

can answer all my questions ?! We'll see.

Thanks,

('s Mom)

Report post · January 10, 2002

Hi Marie,

Actually I have just been told that my daughter's PMG (or wathever it is)

probably came from a CMV infection during pregnancy. I thought that was

strange since I was supposed to be a carrier before -my husband and eldest

son are, and blood tests prior to pregnancy told that-. Nobody has given me

a clear explanation about that but apparently in very rare cases you can be

re-infected and it can still affect the baby even if the consequences are

milder than for a first infection. I asked then about future pregnancies and

they told me that I will be closely followed and get a pre-treatment to

reinforce my defenses before I get pregnant to prevent that from happening

again. My neuro has worked a lot on CMV and what he says is " as all things

in medecine, it's not black or white " . I have an appointment on the 25th to

speak more about all that. I guess it will be a bit too late for you but if

I get anything else before I'll come to you, OK? Good luck,

Angeles, mom to Guillaume (almost 4), and Ines (10 months, supposed PMG,

left side does not work well, can't sit but rolls on both sides, grasps,

laughs, and is a very happy baby...)

Re: New Member

Hi Marie and welcome to the group

Hope you get the info you're looking for in time for the IVF.

Regarding the CMV and PMG, I understand that the CMV is only a

problem if you contract the virus, for the first time, during

pregnancy. Just being a carrier is not a problem. It's the initial

outbreak that causes PMG. I'm pretty sure about this but check with

the experts for confirmation.

Good luck and keep in touch, ('s mom)

Report post · January 10, 2002