Re: (unknown)

December 18, 2005

Wow! Kerry, this is really profound! I found myself reading it a couple of

times, and really thinking this one over a bit. Thanks so much for sharing it!!

Hugs, PJ

Kerry Standifur wrote: True words are not necessarily

beautiful.

Beautiful words are not necessarily truthful.

One who is achieved does not argue,

and one who argues is not achieved.

One who knows the deepest truth does not need segmented information.

One who knows vast amounts of information, may not know the truth.

http://health.groups.yahoo.com/group/AffirmationstoDe-Stress

A positive thinking, positive affirmations support group, discussing ways to

cope with the stresses of daily life. Come aboard! PJ and Gang

December 31, 2005

--- little_pain_intheass

wrote:

> Mt 9 month old son is also weak on the left side. He

> is able to roll.

> I would like to know when do kids with PMG start to

> want to walk.

Hello,

My granddaughter rolled until about a year, then

proceeded to crawl for about 6 months and then walked

at 18 months and now is getting around GREAT at 3.

She runs, walks, rides a trike and climbs stairs. We

have about 13 stairs and she loves going up and down,

She still holds the rails but recently on occasion she

lets go and feels very liberated doing it. The only

thing that seems to lacking is speech. She says very

few words but it's a start.

__________________________________________

Yahoo! DSL – Something to write home about.

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December 31, 2005

My son walked at 21 1/2 months old.

He has moderate Posterier PMG and BPNH

Donna

January 1, 2006

Hi,

I think it depends on how severe the PMG is.

My baby has severe PMG and it is devastating.

She is unable to do anything. She cannot roll over, sit up or even hold her

head up without assistance.

She is also non-verbal.

One thing that Leah has taught me is patience.

If your child can roll over, sit up, or even crawl, that is so wonderful.

Sincerely,

Elena, mom to beautiful Leah 3yrs with severe PMG, status post VNS placement,

G-tube dependant, spastic quadraplegia, on many meds, 18 yrs and Emilio

12yrs.

P.S. I have posted pictures of Leah on the Yahoo groups website.

(unknown)

Mt 9 month old son is also weak on the left side. He is able to roll.

I would like to know when do kids with PMG start to want to walk.

February 9, 2006

People who are not in your world and in your head are always apt to say " sorry "

about your child. We are so far beyond any feelings remotely close to sorry.

YOu are so right...they (your son and mine) are their own wonderful little

persons. They have qualities that are priceless in so many ways. I am not

sorry that my child " will NOT " do certain things. I am grateful to God in

Heaven that he is, who he is. That he can do what he can do..and we focus

simply on the things he CAN do.

Gosh...I wish people could understand that instead feeling sorry for him. Get

past it...greiving a child who " isnt " will never give glory to the child that

is.

Negativity only breeds depression. Be strong...be happy.....your son is an

angel. I am only " sorry " that I cant meet and hug all of the kids and families

I am hearing about on this message board.

Hasselberger

cheryl wrote:

I had someone tell me they were sorry that my son was delayed.He

would not be like a normal kid. He won't run,talk, or play sports like

there kid. That made me so mad i told them that he is his own person

he does things his way and on his time. She said it must be hard to

watch him unable to walk. I told them yes it is but his is the world

to me. I could not see myself with out him.

June 12, 2006

Hi. My so is 4.5 yrs old, and he still takes the bottle for his

Pediasure. He only uses it for that. For water, and anything eles

we try to use a cup. He can't drink from a cup independently. Sorry

can't really help you. Just adding our experience. )

Dianna

(unknown)

To: polymicrogyria

> My son Axel is 1 years old. I would like to start getting him off

> the

> bottle. But he can't use his left arm to hold the cup. His

> therapist

> never answered my question when i asked her what i should do. Can

> any

> one help me. Thanks for your time

>

> Cheryl and Axel

>

June 13, 2006

Cheryl,

We started out by holding the cup for Sam, then he used small, narrow cups

(juice cups are good) that he could hold with one hand.

Christie, mom to Sam (15 yrs old, BPP)

June 13, 2006

Date: Mon Jun 12 17:55:14 CDT 2006

To: polymicrogyria

Subject: (unknown)

Hi,

My daughter had the same problem, any sippy cup we bought she could not

effectively lift to her mouth. As a last resort we bought at the local

supermarket the rubbermaid cup that has a straw that reaches all the way to the

bottom of the cup. They are lightweight, square shaped, clear plastic with a

removable straw inside. they are also cheap. Lees than $3.00 each. Hope this

helps,

My son Axel is 1 years old. I would like to start getting him off the

bottle. But he can't use his left arm to hold the cup. His therapist

never answered my question when i asked her what i should do. Can any

one help me. Thanks for your time

Cheryl and Axel

June 13, 2006

My daughter is almost five and still has 3 bottles a day of Infatrini build up

milk. This is the only way to get any real quantity of liquid in her. She cannot

hold a cup at all, and has difficulty swallowing. We can hold a cup to her but a

lot of the contents either runs out her mouth or else causes her to gag. She

learnt the bottle feeding just after birth and seems to cope with this. As she

has not progressed beyond approx 5-6 months in abilities, I think she therefore

finds the cup a challenge. She does feed solids orally, but only if liquidised

and even this is a difficult. We have avoided having a G tube but only through

determination and perseverance.

Dom

(unknown)

My son Axel is 1 years old. I would like to start getting him off the

bottle. But he can't use his left arm to hold the cup. His therapist

never answered my question when i asked her what i should do. Can any

one help me. Thanks for your time

Cheryl and Axel

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

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Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 13/06/2006

June 13, 2006

My granddaughter, Lindsey was 4 in May. She also receives her total

nutrition from Pedisure in a bottle. Can't drink or hold a cup.

Who knows how long this will continue. She as well can't tollerate

much baby food. She either lets it run out of her mouth or gags.

Eventually they might be looking at a feeding tube but my daughter

is holding off for as long as possible.

Lindsey will be having her toncills and adnoids out June 27th and

be recovered in the ICU unit at Childrens Memorial in Chicago. It

is because of breathing issues she will be in ICU. The doctor said

1 to 2 days. Hopefully she will be able to sleep through the night

and possibly will have less drooling. Maybe it will make a

difference in her eating. But the most inportant thing is to get

those toncills out for the sake of her breathing. The doctor said

they were almost touching each other. I guess this is why she wakes

up almost every night. You can hear her breathing out in the

hallway. Then she's tired the next day and her therapy sessions are

comprimised. I believe this will make a positive difference in

everyones life around here.

Blessings,

Bonnie (grandmother to Lindsey - 4YO W/PMG/Microsephley

>

> My daughter is almost five and still has 3 bottles a day of

Infatrini build up milk. This is the only way to get any real

quantity of liquid in her. She cannot hold a cup at all, and has

difficulty swallowing. We can hold a cup to her but a lot of the

contents either runs out her mouth or else causes her to gag. She

learnt the bottle feeding just after birth and seems to cope with

this. As she has not progressed beyond approx 5-6 months in

abilities, I think she therefore finds the cup a challenge. She does

feed solids orally, but only if liquidised and even this is a

difficult. We have avoided having a G tube but only through

determination and perseverance.

> Dom

>

> (unknown)

>

> My son Axel is 1 years old. I would like to start getting him

off the

> bottle. But he can't use his left arm to hold the cup. His

therapist

> never answered my question when i asked her what i should do.

Can any

> one help me. Thanks for your time

>

> Cheryl and Axel

>

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

-----------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date:

13/06/2006

>

June 14, 2006

Cheryl,

We use a sippy cup with handles, Kennedy will only hold it with your right

hand and she does just fine,

and Kennedy (6yrs.,pmg)

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

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: (unknown)

>Date: Mon, 12 Jun 2006 22:55:14 -0000

>

>My son Axel is 1 years old. I would like to start getting him off the

>bottle. But he can't use his left arm to hold the cup. His therapist

>never answered my question when i asked her what i should do. Can any

>one help me. Thanks for your time

>

> Cheryl and Axel

>

August 30, 2006

I get the whole blaming yourself thing, I did that. But when it comes right

down to it it just doesn't

really matter what caused this. What does matter is how we handle the care

of our little ones. The most important thing is that surround our child

with positive doctors and therapiest in order to give them the best life

possible. I don't mean to sound like how you feel doesn't matter it just

that years of doing this has made it pretty clear to me that we can't go

back so it's best to just focus on today and future.

and Kennedy(7yrs,pmg)

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

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: (unknown)

>Date: Tue, 29 Aug 2006 02:37:13 -0000

>

>Hey everyone,

>

>Has any other mother get told by a Doctor, that you can be a resaon

>why you child has PMG. I was told that i'm having a hard time. I keep

>on blameing myself.

>

August 30, 2006

Yes, it does not matter how it was caused. It happened to our children for some

reason and we, as their parents, need to focus on growth and development and not

on the " why " . I know how it feels, trust me. We all do. Our children need our

full attention and focus on how we are to handle their care today. Keep your

chin up and remember, our little ones need us.

~

(unknown)

>Date: Tue, 29 Aug 2006 02:37:13 -0000

>

>Hey everyone,

>

>Has any other mother get told by a Doctor, that you can be a resaon

>why you child has PMG. I was told that i'm having a hard time. I keep

>on blameing myself.

>

August 30, 2006

When the doctor told you that you could be a cause of your child's PMG,

what did he say?

Christie, mom to Sam (15 yrs old, BPP)

> Hey everyone,

>

> Has any other mother get told by a Doctor, that you can be a resaon

> why you child has PMG. I was told that i'm having a hard time. I keep

> on blameing myself.

>

November 15, 2006

Hi! My son just turned 5 on Sat. He has Bilateral PMG. From

what I know, you are born with PMG. I have heard that because PMG spans

greatly, some people don't even know that they have it until they have a

scan done. Though, she could have had a seizure and that could have

stemmed from PMG.

Dianna

(unknown)

To: polymicrogyria

> I am trying to help a friend of mine who is involved in a lawsuit

> stemming from a motor vehicle accident that occured when she was

> 23. During the accident her head hit and broke the windshield.

> Following the accident she started having migraine headaches,

> dizziness, seizures, and blackouts. A CT of her head revealed

> " right cerebral polymicrogyria. "

>

> I am wondering if a traumatic head injury at 23 years old could

> cause this condition. If so, are these the symptoms that accompany

> this condition. If a traumatic head injury cannot cause the

> condition, can it cause the condition to become symptomatic if it

> has been previously asymptomatic?

>

> I would appreciate any insight you could provide.

>

> Thanks!

>

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

> Sponsored Link

>

> $200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home

> equity - Click now for info

>

November 15, 2006

I'm no expert, but I've learned a lot about PMG and everything I've read/heard

says that it is a congenital condition (born with it) and not acquired. PMG is

a brain malformation that occurs when the brain is forming during the second

trimester and is the result of a neuronal migration disruption.

There are several cases where people had no symptoms until adulthood, but most

are discovered in infancy or early childhood. The causes, that I'm aware of,

are:

Genetic (usually auto recessive; meaning so far back in ancestry you'd never

know it was in your family),

Cytomeglovirus during pregnancy (a fairly contagious virus with like the flu

symtoms or sometimes none at all)

Umbilical cord asphyxiation (during a critical period of brain development

the umbilical cord was crimped, in utero, and blood flow was momentarily cut

off)

Consanguineous parents (mom and dad were blood relatives).

Again, I'm not an expert but it would appear that the only sure fire way I've

ever heard of to diagnose PMG is with an MRI, not a CT scan.

Others out there know lots more than I do, and will correct me if I'm wrong

(and please do, I don't want to give bad info), this is just from what I know

about PMG so far.

Penny Rubalcaba - Stepmom to nela (14 years old)

DeCastro wrote:

I am trying to help a friend of mine who is involved in a lawsuit

stemming from a motor vehicle accident that occured when she was 23. During the

accident her head hit and broke the windshield. Following the accident she

started having migraine headaches, dizziness, seizures, and blackouts. A CT of

her head revealed " right cerebral polymicrogyria. "

I am wondering if a traumatic head injury at 23 years old could cause this

condition. If so, are these the symptoms that accompany this condition. If a

traumatic head injury cannot cause the condition, can it cause the condition to

become symptomatic if it has been previously asymptomatic?

I would appreciate any insight you could provide.

Thanks!

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

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now for info

November 17, 2006

It sounds like he may be having trouble dealing with the now rigorous

demands of the K classroom. Much of his work and the completion of it

in a timely manner will call for on demand fine motor skills which can

be HUGE for someone with a sensory disorder and/or Autism.

The Functional Behavior Analysis that should be done on his behavior

should isolate his problem(s)and if it doesn't, it wasn't done right.

January 30, 2007

Jen,

I am sure that since you have 2 older daughters that you are well aware that

" autism " is a communication disorder. Have you noticed some communication

delays/behavior problems that have tipped you off to check out autism? Also, are

you taking her to a Doctor/Psychologist/Neurologist to be evaluated or has she

been? The reason I say this is this: The school systems are not authorities on

autism. Even though they have experience with it. They can be biasied in their

diagnosis/prognosis. If you have not looked into a second opinion, What type of

specialist are you waiting to see?

Shanna (mother to 5 children; youngest, , 12 yrs, autism)

jen swank wrote:

Hi everyone... I joined the group last week and have enjoyed reading

all of the postings.. I have three daughters 3,6 and 8. My youngest daughter

Emma has autism...I think...no formal diagnosis yet, I have suspected she was on

the spectrum since she was about 18 mo. old....now she attends a special ed

preschool and her teachers agree that she needs to be evaluated again.

Anyway...we are on a waiting list to see a group of specialist for an actual

diagnosis. Emma has been delayed since about 3 mo, so we have been going to

therapies her whole life..and have been told everything...cerebal palsy, a

muscle disorder, you name it I have heard it...so I am anxious to finally get a

diagnosis that fits! I am glad to have joined this group...we live in a small

community and I have yet to meet anyone with a autisic daughter...lots of boys

of course. I hope everyone is having a great week. ~ Jen

__________________________________________________________

Don't pick lemons.

See all the new 2007 cars at Yahoo! Autos.

http://autos.yahoo.com/new_cars.html

January 30, 2007