New To Group

[Guest guest]

Bonnie-

 

Thanks for the laugh!  I think so much of it comes from parenting girls too. 

She has two boys and she is QUEEN!  I on the other hand have 3 girls and my mom

has one of each.  My mom doesn't offer as much advice to my brother and never

steps in on my sis in law.  With me she does but on a different level like she

understands.  Unfortunately we are not going to remain together the way I see

it anyway and his mother will fight me to get visits.  This as you know will

not be the BEST thing for a child with PMG.  I have read that continuity of

care is crucial.  Since she believes nothing is wrong she will not do what I

ask of her.  She wants me to do things like not put as much thickener in her

formula so it lasts longer and hates that I give her meds to sleep.  We were

getting 5 hours in 24 hour period.  I had to do something or Emm was not going

to rest enough to even develop properly.  She was mean and nasty when I gave up

pumping breast milk

after 16 weeks.  I would pump one hour feed the next pretty much round the

clock.  Emm never nursed.  Then she wanted me to make home-made formula like

she did.  You know that makes you a better mom!  And through all this I smile

grit my teeth and raise my beautiful girls! Thanks for being my sounding

board!  Didn't intend for it to be that way!  I moved to a different town and

don't have alot of friends here! 

 

Jodi

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

Jodi

Vent all you want that is why we are hear! We all understand most of us all have

someone in our lives that just don't get it. For me it is my mother in law too

well most of my husbands family really. When first started having seizures

she tried telling me it was my milk had too much water in it and I should stop

nursing! But after the poor Dr had to explain to her that that was pretty much

crazy she stopped coming to visit is at the hospital. They live 4 blocks from it

and we have had 8 extended stays over the last 2 years and have never came to

see us. And of course my husband always finds an excuse for her. And I'm pretty

lucky she would never want to watch . Says he seizes the entire time I'm

gone! But she recently went too far and now my husband has decided she will not

be a part of 's life, like she ever was! So sorry you have to deal with

this just keep strong and usually these people will see what is really going on

or fade from your life because they refuse to accept reality and yours doesn't

exist in their lives. Take care

sting mom to 2yr old non mobile non verbal but plenty of attitude!

Sent from my BlackBerry Smartphone provided by Alltel

New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

Ya I don't see her still involved if Emmalee is 15 and still in diapers

considering she always hands her to me when she needs changed! And I won't be

hurt!  She is angry that I haven't left her overnight with her! Can u believe

that?  I never left my older healthy two girls anywhere!  I have a feeling we

are going to have some huge Jerry Springer moment in the front yard someday!

lol  However I am going to try to not stoop to her trailer park trash level and

remain a Christian!  I said " try " no promises!  The important ones are the

kids and I take very good care of mine. Sometimes I think she wants me not to so

she can have control.

Jodi

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

That's right Jodi!  You go " sista girl " !!  Hee!  We're all here to listen

anytime!

Bonnie

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

Haha! I get a little radical sometimes huh!? I've been complaining so much I

haven't asked alot of questions I have or even properly introduced myself!

 

I am Jodi and I live in Kansas with my 3 wonderful daughters and Emmalee my 11

month old's father.  I am a nurse in a rural health clinic however, I quit my

job to stay home and take care of Emm.  I am 36 years old and blamed my age for

alot of this but the docs reassured me it had nothing to do with it or my

massive diet coke habit!

 

Without telling the whole story since you all understand you tell it soooo much

and it wears you down.  Emmalee went from having diagnosis of hydrocephele (no

longer), agenesis of corpus callosum (confirmed) and colpocephele (confirmed)

to Lissencephaly at 2 months of age.  And a recent MRI showed that it is not

Liss but PMG.  I never thought she fit into the Liss group and felt that I

often felt bad when I had such good news to report.  I hold all the dear

friends I have met on the Loop very close to my heart!  So currently in

addition to the above mentioned Emm has optic nerve hypoplasia and possible

septo optic dysplasia, atrial septal defect, pulmonary valve stenosis and right

heart enlargement.  Also has some bowel issues and swallowing difficulties. 

She takes thickened formula mixed to high calorie and no baby food at this

time.  She recently started sitting up and is doing quite well at it!  she

will scoot some too!  She used to keep

her fists closed tightly but now can hold things and has an awesome grip.  She

is wobbly but in general has good head and trunk control.  She says dada off

and on but no other combos. Babbles alot and has a contagious laugh!  She does

alot of grunting and growling especially when frustrated.  Appearance is

normal.  Of course I always thought that and one neurologist said you can tell

something is wrong with her.  I just told him he never has seen her father!

lol  Apparently Emm has small low set ears and that's what he meant.  I do

admit she has an odd-shaped noggin.  She does not currently have any seizure

activity that I am aware of.  I thought I witnessed a few absense seizures when

she was first born.  She had an EEG in the NICU that was essentially normal. We

have not met with the docs since we received the PMG diagnosis so we do not know

for sure what area of her brain is affected.  The first neurologist that

diagnosed Liss said she is

missing approx. 60% of her brain and she has a small cerebellum.  We all know

how amazing the human brain is though and Emm does amazingly well.  She is

small and weight gain is our biggest issue right now. 

 

So this got very long and I promise it's the last time I will get so

long-winded!  Just new to all this and I have noticed that alot of your

children are older than Emm and was wondering some of the obstacles you faced

during the first year.  My biggest fear is the start of seizures.  Nurse or

not I am Emm's mommy first!

 

Thanks!

Jodi

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

OK...had to slightly giggle as my Dad is the same!  He thinks there is nothing

wrong with , and that I am just being dramatic..  I really wish that was

true, really.  He pretty much frowns and makes a face if i say I am going to an

appt, so now I don't tell him any info.  So sad...first my husband not

involved, and now no support from parent.  Oh well.  Sometimes we have to rely

on good friends for an ear!!

Hang in there!!  Bridget

________________________________

To: polymicrogyria

Sent: Thu, April 8, 2010 7:17:51 AM

Subject: RE: New to group

 

Crystal,

 

We all have to support one another.  It is sad that it seems the people who

should support us the most in this tends to cause the most stress and turmoil. 

Emmalee's dad does not go to appts with us.  He blames it on his health

condition.  However he goes when he wants where he wants when its convenient

and something he wants to do.

 

My problem is his mother.  She thinks there is nothing wrong with Emmalee. 

You see it doesn't fit into her perfect little world.  She insists on going to

appts and then tries to talk over me and tell the drs that they are wrong that

they don't know Emm.  I am a nurse and although I don't know everything I do

have some medical knowledge and am not stupid by no means.  She however is the

smartest dumb person I know! Ha!  So I guess the lesson is it isn't always a

good thing to have family involved!  Luckily my mom is supportive and trusting

and thinks I do a great job.  I have two other daughters and they are doing

well too so its not like I am new at this!  She questions everything I do not

just the medical part of Emm's life.  It is causing a huge strain on everyone.

 

I am here for you anytime!  It is so nice to know there are people who you can

trust and talk to and they won't judge you. 

 

Jodi-mom to Emmalee almost 1 year!

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

Oh yes!  Please vent away!

Bridget  (that's what we are here for..)

________________________________

To: polymicrogyria

Sent: Fri, April 9, 2010 9:19:00 AM

Subject: Re: New to group

 

That's right Jodi!  You go " sista girl " !!  Hee!  We're all here to listen

anytime!

Bonnie

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

 

Crystal, welcome!  I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me.  So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!!  Hang in there and just love him.  The worries won't stop,

but you will become stronger in dealing with all the issues. 

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

 

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI.  The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all.  Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it.  So I didn't get the news until

3/2/10.  I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10.  I haven't slept in

months now.  I have so many unanswered questions and worries. 

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking.  He also has

been diagnosed with ADHD and has some fairly significant impulse control

issues.  He has never had any " visible " seizures that I am aware of, but now

I'm wondering about Nocturnal seizures and I'm thinking that he's having them

and I just didn't know what to look for.  I'm also very curious about the

" Invisible " seizures I've been reading about.  That really scares me and could

explain some of his behaviors.  Oh, and no drooling since he finally stopped

teething.

Any information any of you have to share would be most welcome.  I'm feeling

pretty alone in this right now.  My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

She is 7, just finishing 1st grade - and we just got the diagnosis after

years of not knowing what the cause of all her problems were (and hence

having issues with coverage w/insurance and not qualifying for school

accommodations previously) after having a wonderful neurologist take the

extra step of ordering an MRI.

Diane Roy wrote:

> , How old is your child? Diane

> Re: New to group

>

> Hi Diane,

>

> We have a case of unilateral (right hemisphere) PMG with left

> hemiparesis/ideomotor apraxia, along with sensory, learning, and social

> skill issues (diagnosed with Asperger's) as a result of the lobes

> affected. It seems like a very different diagnosis than bilateral PMG,

> " less worse, " as our doctor put it, but definetely with its own set of

> unique challenges. It has actually been hard to convince others of the

> need for services because she " looks " fine but her 'wiring problem'

> become apparent in academic and social situations as any kind of

> abstract thinking (right brain skills) and communication integration are

> a challenge. We are doing OT and group ST/OT (known by the kids as

> frienship groups) and our hoping that the school district will finally

> cover speech therapy in the school this next year.

>

> I am very interested to share with you about this and am glad you found

> the group.

>

> Take care and welcome,

>

>

>

> Holman wrote:

>

>>

>>

>> Hi Diane!

>>

>> My daughter is 13 years,

>>

>

>

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

>

>

[Guest guest]

Diane

We have the issue of a normal looking child. Oddly enough it often makes things

REALLY challenging when it comes to IEPs and services. My daughter played

basketball and was on a dance team laste year. She walks with a slight limp, but

unless you know you can't tell.

We are most challenged by the processing issues. She is borderline aspergers,

but they don't want to diagnose her at this point. They think it may be a combo

of drugs and left frontal lobe seizure activity. Her activity there is

unrelenting. It is scary to be honest. Processing, organization, planning, and

anything requiring more than 2 steps is virtually impossible for her. It is a

huge challenge to make the schools understand. Our last IEP meeting was 3 hours,

and at one point the principal stated that they were not babysitters, and if she

required that much attention they would have to put her in self contained

classroom. She dropped that quickly with a raise of my eyebrow.

Sorry, distracted. Lol. Anyway, do you have impulse control issues? Those scare

me the most!!

Sent from my iPhone

She is 7, just finishing 1st grade - and we just got the diagnosis after

years of not knowing what the cause of all her problems were (and hence

having issues with coverage w/insurance and not qualifying for school

accommodations previously) after having a wonderful neurologist take the

extra step of ordering an MRI.

Diane Roy wrote:

> , How old is your child? Diane

> Re: New to group

>

> Hi Diane,

>

> We have a case of unilateral (right hemisphere) PMG with left

> hemiparesis/ideomotor apraxia, along with sensory, learning, and social

> skill issues (diagnosed with Asperger's) as a result of the lobes

> affected. It seems like a very different diagnosis than bilateral PMG,

> " less worse, " as our doctor put it, but definetely with its own set of

> unique challenges. It has actually been hard to convince others of the

> need for services because she " looks " fine but her 'wiring problem'

> become apparent in academic and social situations as any kind of

> abstract thinking (right brain skills) and communication integration are

> a challenge. We are doing OT and group ST/OT (known by the kids as

> frienship groups) and our hoping that the school district will finally

> cover speech therapy in the school this next year.

>

> I am very interested to share with you about this and am glad you found

> the group.

>

> Take care and welcome,

>

>

>

> Holman wrote:

>

>>

>>

>> Hi Diane!

>>

>> My daughter is 13 years,

>>

>

>

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

>

>

[Guest guest]

Hi Diane. My little

is five years old and has PMG. As well as schytsanzaphaly. (I won't bet

my life on that being the correct spelling I have to look everytime to get it

right) he was first diagnost with a stroke then failure to thrive. Finally at

the age of three they did an MRI. And found what was really going on. he has

never had a seizure but was given a pretty good chance that he could develop

them. He's very bright but is non verbal. Were working on getting him a minspeak

which I believe will be amazeing for him. He tries so hard to talk but his

little brain and little mouth just hasn't made a connection. Anyway I just

wanted to introduce myself and say welcome! Janell

Sent from my Verizon Wireless BlackBerry

New to group

Hi My name is Diane and my daughter is 3. She was diagnosed with PMG by Dr.

Dobyns about 2 years ago. We live in Indianapolis. Nisha has left hemi CP and

some language processing issues. She is doing very well and has exceeded our

expectations. I am on this list serve that has 1700 people for all ages with

hemiphresis. They are such a great support on raising your child with all the

IEP, therapy, sensory and behavior issues we face daily. I am glad to find this

group because the hemi dx seems to be mainly a stroke and that gives you

different challenges.

Diane Roy

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

[Guest guest]

Hi , Nisha was dx when she was 6 mos then she has had 3 generalized

seizures(2 with fever) and her EEG is all the epileptiform activity. We have had

PT and OT since dx and speech a year now. Initially it was with first steps then

we transitioned to dev preschool. She actually was age appropriate in her

testing but we kept the IEP her teacher has big goals for her. She is going to a

reg preschool one day a week too. She is high functioning but still has a lot to

over come. We started to correct her gait in April. After 6 weeks of seeing PT

outside of school now we use Estim twice a week it really takes the hemi out of

her lower half. We have a lot of behaviors like smiling and looking and not

paying attention. We had a functional vision exam and everyone needs this. She

has visual processing problems. The OT is going to give me a list for me, school

OT and and new outside OT. We are going to the person June 7 for constraint

induced splint, benik and general OT. I am planning on doing a lot more

activities at home with the leftie hand. We have been using kinesio tape to keep

the size equal, it really helps. Behavior wise she is generally sensory seeking,

fussy if she wakes at night and needs a lot of direct attention.What are the

therpies that you have that helps?Diane

To: polymicrogyria

From: divewithmelissa@...

Date: Mon, 24 May 2010 18:07:31 -0700

Subject: Re: New to group

Diane

We have the issue of a normal looking child. Oddly enough it often makes things

REALLY challenging when it comes to IEPs and services. My daughter played

basketball and was on a dance team laste year. She walks with a slight limp, but

unless you know you can't tell.

We are most challenged by the processing issues. She is borderline aspergers,

but they don't want to diagnose her at this point. They think it may be a combo

of drugs and left frontal lobe seizure activity. Her activity there is

unrelenting. It is scary to be honest. Processing, organization, planning, and

anything requiring more than 2 steps is virtually impossible for her. It is a

huge challenge to make the schools understand. Our last IEP meeting was 3 hours,

and at one point the principal stated that they were not babysitters, and if she

required that much attention they would have to put her in self contained

classroom. She dropped that quickly with a raise of my eyebrow.

Sorry, distracted. Lol. Anyway, do you have impulse control issues? Those scare

me the most!!

Sent from my iPhone

She is 7, just finishing 1st grade - and we just got the diagnosis after

years of not knowing what the cause of all her problems were (and hence

having issues with coverage w/insurance and not qualifying for school

accommodations previously) after having a wonderful neurologist take the

extra step of ordering an MRI.

Diane Roy wrote:

> , How old is your child? Diane

> Re: New to group

>

> Hi Diane,

>

> We have a case of unilateral (right hemisphere) PMG with left

> hemiparesis/ideomotor apraxia, along with sensory, learning, and social

> skill issues (diagnosed with Asperger's) as a result of the lobes

> affected. It seems like a very different diagnosis than bilateral PMG,

> " less worse, " as our doctor put it, but definetely with its own set of

> unique challenges. It has actually been hard to convince others of the

> need for services because she " looks " fine but her 'wiring problem'

> become apparent in academic and social situations as any kind of

> abstract thinking (right brain skills) and communication integration are

> a challenge. We are doing OT and group ST/OT (known by the kids as

> frienship groups) and our hoping that the school district will finally

> cover speech therapy in the school this next year.

>

> I am very interested to share with you about this and am glad you found

> the group.

>

> Take care and welcome,

>

>

>

> Holman wrote:

>

>>

>>

>> Hi Diane!

>>

>> My daughter is 13 years,

>>

>

>

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

>

>

[Guest guest]

________________________________

To: PMG <polymicrogyria >

Sent: Tue, May 25, 2010 12:15:30 AM

Subject: Re: New to group

 

Hi Diane. My little is five years old and has PMG. As well as

schytsanzaphaly. (I won't bet my life on that being the correct spelling I have

to look everytime to get it right) he was first diagnost with a stroke then

failure to thrive. Finally at the age of three they did an MRI. And found what

was really going on. he has never had a seizure but was given a pretty good

chance that he could develop them. He's very bright but is non verbal. Were

working on getting him a minspeak which I believe will be amazeing for him. He

tries so hard to talk but his little brain and little mouth just hasn't made a

connection. Anyway I just wanted to introduce myself and say welcome! Janell

Sent from my Verizon Wireless BlackBerry

New to group

Hi My name is Diane and my daughter is 3. She was diagnosed with PMG by Dr.

Dobyns about 2 years ago. We live in Indianapolis. Nisha has left hemi CP and

some language processing issues. She is doing very well and has exceeded our

expectations. I am on this list serve that has 1700 people for all ages with

hemiphresis. They are such a great support on raising your child with all the

IEP, therapy, sensory and behavior issues we face daily. I am glad to find this

group because the hemi dx seems to be mainly a stroke and that gives you

different challenges.

Diane Roy

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

[Guest guest]

Welcome janelle!

Sent on the Sprint® Now Network from my BlackBerry®

New to group

Hi My name is Diane and my daughter is 3. She was diagnosed with PMG by Dr.

Dobyns about 2 years ago. We live in Indianapolis. Nisha has left hemi CP and

some language processing issues. She is doing very well and has exceeded our

expectations. I am on this list serve that has 1700 people for all ages with

hemiphresis. They are such a great support on raising your child with all the

IEP, therapy, sensory and behavior issues we face daily. I am glad to find this

group because the hemi dx seems to be mainly a stroke and that gives you

different challenges.

Diane Roy

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

[Guest guest]

Diane,

I agree with your comment on getting a functional vision exam, it led to

our daughter getting bifocals which the regular optometrist hadn't

caught and they've helped tremendously with depth perception problesm.

Question: what is Estim? Or is that the name of your OT? Comes up as

something very different on the internet...

I am interested in hearing what you do to work on the left hand. Can

you describe/name the activities/exercises you do?

Thanks for this insight,

Diane Roy wrote:

> Hi , Nisha was dx when she was 6 mos then she has had 3 generalized

seizures(2 with fever) and her EEG is all the epileptiform activity. We have had

PT and OT since dx and speech a year now. Initially it was with first steps then

we transitioned to dev preschool. She actually was age appropriate in her

testing but we kept the IEP her teacher has big goals for her. She is going to a

reg preschool one day a week too. She is high functioning but still has a lot to

over come. We started to correct her gait in April. After 6 weeks of seeing PT

outside of school now we use Estim twice a week it really takes the hemi out of

her lower half. We have a lot of behaviors like smiling and looking and not

paying attention. We had a functional vision exam and everyone needs this. She

has visual processing problems. The OT is going to give me a list for me, school

OT and and new outside OT. We are going to the person June 7 for constraint

induced splint, benik and general OT. I am planning on doing a lot more

activities at home with the leftie hand. We have been using kinesio tape to keep

the size equal, it really helps. Behavior wise she is generally sensory seeking,

fussy if she wakes at night and needs a lot of direct attention.What are the

therpies that you have that helps?Diane

>

> To: polymicrogyria

> From: divewithmelissa@...

> Date: Mon, 24 May 2010 18:07:31 -0700

> Subject: Re: New to group

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Diane

>

>

>

> We have the issue of a normal looking child. Oddly enough it often makes

things REALLY challenging when it comes to IEPs and services. My daughter played

basketball and was on a dance team laste year. She walks with a slight limp, but

unless you know you can't tell.

>

>

>

> We are most challenged by the processing issues. She is borderline aspergers,

but they don't want to diagnose her at this point. They think it may be a combo

of drugs and left frontal lobe seizure activity. Her activity there is

unrelenting. It is scary to be honest. Processing, organization, planning, and

anything requiring more than 2 steps is virtually impossible for her. It is a

huge challenge to make the schools understand. Our last IEP meeting was 3 hours,

and at one point the principal stated that they were not babysitters, and if she

required that much attention they would have to put her in self contained

classroom. She dropped that quickly with a raise of my eyebrow.

>

>

>

> Sorry, distracted. Lol. Anyway, do you have impulse control issues? Those

scare me the most!!

>

>

>

>

>

>

>

> Sent from my iPhone

>

>

>

> On May 24, 2010, at 8:49 PM, and Kent

wrote:

>

>

>

> She is 7, just finishing 1st grade - and we just got the diagnosis after

>

> years of not knowing what the cause of all her problems were (and hence

>

> having issues with coverage w/insurance and not qualifying for school

>

> accommodations previously) after having a wonderful neurologist take the

>

> extra step of ordering an MRI.

>

>

>

> Diane Roy wrote:

>

>

>> , How old is your child? Diane

>>

>

>

>> Re: New to group

>>

>

>

>

>

>> Hi Diane,

>>

>

>

>

>

>> We have a case of unilateral (right hemisphere) PMG with left

>>

>

>

>> hemiparesis/ideomotor apraxia, along with sensory, learning, and social

>>

>

>

>> skill issues (diagnosed with Asperger's) as a result of the lobes

>>

>

>

>> affected. It seems like a very different diagnosis than bilateral PMG,

>>

>

>

>> " less worse, " as our doctor put it, but definetely with its own set of

>>

>

>

>> unique challenges. It has actually been hard to convince others of the

>>

>

>

>> need for services because she " looks " fine but her 'wiring problem'

>>

>

>

>> become apparent in academic and social situations as any kind of

>>

>

>

>> abstract thinking (right brain skills) and communication integration are

>>

>

>

>> a challenge. We are doing OT and group ST/OT (known by the kids as

>>

>

>

>> frienship groups) and our hoping that the school district will finally

>>

>

>

>> cover speech therapy in the school this next year.

>>

>

>

>

>

>> I am very interested to share with you about this and am glad you found

>>

>

>

>> the group.

>>

>

>

>

>

>> Take care and welcome,

>>

>

>

>

>

>>

>>

>

>

>

>

>> Holman wrote:

>>

>

>

>

>

>

>

>

>

>>> Hi Diane!

>>>

>

>

>

>

>>> My daughter is 13 years,

>>>

>

>

>

>

>

>

>

>

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

>>

>

>

>

>

>>

[Guest guest]

Hi ,

Not sure if you were replying to my thread or Diane's original, so I'm

replying back to this one. Yes, if you don't " look " disabled it seems

to really be problematic. I think most schools (and people for that

matter, including pediatricians) don't really understand neurological

issues. I have found a book that another mom gave me which I found so

insightful and helpful that I actually went to Amazon and bought 2

copies, one for myself and one for the school, because it actually

outlines in checklist format and in lay terms the manifestations of

hemisphere dysfunction emotionally, physically, and academically. It is

called _Disconnected Kids_ by Dr. Melillo. I am going to bring

it to our IEP in the Fall and hope that it will give them a better, more

specific understanding of how the PMG affects her learning, processing,

and behavior.

As far as impulse control goes, our main problem is emotion regulation

and going from " 0 to 60 " in terms of temper flare up. Still haven't

figured out the best way to handle this and to help her get a handle on

it. Anyone?

Hope this is useful,

Holman wrote:

>

>

> Diane

>

> We have the issue of a normal looking child. Oddly enough it often

> makes things REALLY challenging when it comes to IEPs and services. My

> daughter played basketball and was on a dance team laste year. She

> walks with a slight limp, but unless you know you can't tell.

>

> We are most challenged by the processing issues. She is borderline

> aspergers, but they don't want to diagnose her at this point. They

> think it may be a combo of drugs and left frontal lobe seizure

> activity. Her activity there is unrelenting. It is scary to be honest.

> Processing, organization, planning, and anything requiring more than 2

> steps is virtually impossible for her. It is a huge challenge to make

> the schools understand. Our last IEP meeting was 3 hours, and at one

> point the principal stated that they were not babysitters, and if she

> required that much attention they would have to put her in self

> contained classroom. She dropped that quickly with a raise of my eyebrow.

>

> Sorry, distracted. Lol. Anyway, do you have impulse control issues?

> Those scare me the most!!

>

>

>

> Sent from my iPhone

>

> On May 24, 2010, at 8:49 PM, and Kent

> <smkent@... <mailto:smkent%40swbell.net>> wrote:

>

> She is 7, just finishing 1st grade - and we just got the diagnosis after

> years of not knowing what the cause of all her problems were (and hence

> having issues with coverage w/insurance and not qualifying for school

> accommodations previously) after having a wonderful neurologist take the

> extra step of ordering an MRI.

>

> Diane Roy wrote:

> > , How old is your child? Diane

> > Re: New to group

> >

> > Hi Diane,

> >

> > We have a case of unilateral (right hemisphere) PMG with left

> > hemiparesis/ideomotor apraxia, along with sensory, learning, and social

> > skill issues (diagnosed with Asperger's) as a result of the lobes

> > affected. It seems like a very different diagnosis than bilateral PMG,

> > " less worse, " as our doctor put it, but definetely with its own set of

> > unique challenges. It has actually been hard to convince others of the

> > need for services because she " looks " fine but her 'wiring problem'

> > become apparent in academic and social situations as any kind of

> > abstract thinking (right brain skills) and communication integration

> are

> > a challenge. We are doing OT and group ST/OT (known by the kids as

> > frienship groups) and our hoping that the school district will finally

> > cover speech therapy in the school this next year.

> >

> > I am very interested to share with you about this and am glad you found

> > the group.

> >

> > Take care and welcome,

> >

> >

> >

> > Holman wrote:

> >

> >>

> >>

> >> Hi Diane!

> >>

> >> My daughter is 13 years,

> >>

> >

> >

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

> >

> >

[Guest guest]

My thoughts are you need heavy work activities to stimulate the sensory system

and not allow that behavior. You control it by a sensory diet. Schools are

getting better at sensory diets, get the OT behind you. The school want easy

solutions. I think with PMG involving motor skills you lose some sensory inputs

so they will be the wild sensory child jumping, chewing, singing.

This is very helpful website

http://www.sensory-processing-disorder.com/index.html

Diane

To: polymicrogyria

From: smkent@...

Date: Tue, 25 May 2010 10:13:29 -0500

Subject: Re: New to group

Hi ,

Not sure if you were replying to my thread or Diane's original, so I'm

replying back to this one. Yes, if you don't " look " disabled it seems

to really be problematic. I think most schools (and people for that

matter, including pediatricians) don't really understand neurological

issues. I have found a book that another mom gave me which I found so

insightful and helpful that I actually went to Amazon and bought 2

copies, one for myself and one for the school, because it actually

outlines in checklist format and in lay terms the manifestations of

hemisphere dysfunction emotionally, physically, and academically. It is

called _Disconnected Kids_ by Dr. Melillo. I am going to bring

it to our IEP in the Fall and hope that it will give them a better, more

specific understanding of how the PMG affects her learning, processing,

and behavior.

As far as impulse control goes, our main problem is emotion regulation

and going from " 0 to 60 " in terms of temper flare up. Still haven't

figured out the best way to handle this and to help her get a handle on

it. Anyone?

Hope this is useful,

Holman wrote:

>

>

> Diane

>

> We have the issue of a normal looking child. Oddly enough it often

> makes things REALLY challenging when it comes to IEPs and services. My

> daughter played basketball and was on a dance team laste year. She

> walks with a slight limp, but unless you know you can't tell.

>

> We are most challenged by the processing issues. She is borderline

> aspergers, but they don't want to diagnose her at this point. They

> think it may be a combo of drugs and left frontal lobe seizure

> activity. Her activity there is unrelenting. It is scary to be honest.

> Processing, organization, planning, and anything requiring more than 2

> steps is virtually impossible for her. It is a huge challenge to make

> the schools understand. Our last IEP meeting was 3 hours, and at one

> point the principal stated that they were not babysitters, and if she

> required that much attention they would have to put her in self

> contained classroom. She dropped that quickly with a raise of my eyebrow.

>

> Sorry, distracted. Lol. Anyway, do you have impulse control issues?

> Those scare me the most!!

>

>

>

> Sent from my iPhone

>

> On May 24, 2010, at 8:49 PM, and Kent

> <smkent@... <mailto:smkent%40swbell.net>> wrote:

>

> She is 7, just finishing 1st grade - and we just got the diagnosis after

> years of not knowing what the cause of all her problems were (and hence

> having issues with coverage w/insurance and not qualifying for school

> accommodations previously) after having a wonderful neurologist take the

> extra step of ordering an MRI.

>

> Diane Roy wrote:

> > , How old is your child? Diane

> > Re: New to group

> >

> > Hi Diane,

> >

> > We have a case of unilateral (right hemisphere) PMG with left

> > hemiparesis/ideomotor apraxia, along with sensory, learning, and social

> > skill issues (diagnosed with Asperger's) as a result of the lobes

> > affected. It seems like a very different diagnosis than bilateral PMG,

> > " less worse, " as our doctor put it, but definetely with its own set of

> > unique challenges. It has actually been hard to convince others of the

> > need for services because she " looks " fine but her 'wiring problem'

> > become apparent in academic and social situations as any kind of

> > abstract thinking (right brain skills) and communication integration

> are

> > a challenge. We are doing OT and group ST/OT (known by the kids as

> > frienship groups) and our hoping that the school district will finally

> > cover speech therapy in the school this next year.

> >

> > I am very interested to share with you about this and am glad you found

> > the group.

> >

> > Take care and welcome,

> >

> >

> >

> > Holman wrote:

> >

> >>

> >>

> >> Hi Diane!

> >>

> >> My daughter is 13 years,

> >>

> >

> >

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

> >

> >

[Guest guest]

Kat,

Oh, by the way, my daughter Ella is doing good. She is having seizures,

though not infantile spasms any more, and we are trying to figure out how to

address them. She goes for another MRI next month because the spikes on her

EEG moved from the right side (where her PMG is) to the left--which is

puzzling because that side did not show any dysplasia on the scan from two

years ago.

--

[Guest guest]

Hello,

 

my grandson Chuck was diagnosed at 12months with right sided unilateral PMG

which also affects the left side of his body. He is now 15 months old, can just

about sit up by himself, he is pulling himself around with his right arm like

commando crawling. He is not talking yet but makes babbling sounds. In Australia

there is no support groups for PMG. He visits the childrens hospital every

fortnight for occupational therapy, physiotherapy, we are just about to start

speech therapy. My daughter was given the diagnosis from the neurologist and

sent on her way, we have researched this ourselves and are co ordinating all his

appointments. He has an appt next week to see a DR about botox for his

contracted left hand. He has seen an opthalmologist who is happy with his sight,

he had an EEG last week and we are due for results next week. As yet no

seizures, fingers crossed for that.

Deb Hedley

Ph: 03 93489469 W

0407233831

________________________________

To: polymicrogyria

Sent: Saturday, 15 October 2011 4:45 AM

Subject: new to group

 

Hi Everyone

My son,Quincy, was recently diagnosed with left sided unilateral PMG which is

affecting the right side of his body. Hes almost 9 months old. We were more or

less given a diagnosis and sent on our way and told to contact early

intervention, which you probably all know is a process in itself. Can anyone

give me some guidance as to other things we should be doing? We dont know what

we're doing and everyone (family, friends) tells us different things.

Also, Quincy is a twin. His brother is developing normally so they will not test

him. Do anyone have any experience with twins?

Thanks,

[Guest guest]

I just wanted to thank everyone for you responses.

>

> Hi Everyone

>

> My son,Quincy, was recently diagnosed with left sided unilateral PMG which is

affecting the right side of his body. Hes almost 9 months old. We were more or

less given a diagnosis and sent on our way and told to contact early

intervention, which you probably all know is a process in itself. Can anyone

give me some guidance as to other things we should be doing? We dont know what

we're doing and everyone (family, friends) tells us different things.

> Also, Quincy is a twin. His brother is developing normally so they will not

test him. Do anyone have any experience with twins?

>

> Thanks,

>

>

[Guest guest]

Hi ,

We were told the same thing after my son Ben's diagnosis, and I didn't have a

clue as to what Early Intervention was, much less how it could help us. It took

us months to get set up with services through the state, and then months to find

the right therapists. If I could do it again I would probably be more

aggressive about finding really good therapists early on. Even paying ourselves

until we got approved for Early Intervention. As another parent said, it's the

therapists who make the most difference to my son's function, not the doctors.

I have also found that I need to be his care coordinator - a role I was not

prepared for. For example, my son had a lot of fluid in his ears which can

significantly interfere with hearing and therefore speech. He wasn't babbling

much so I didn't know. I was upset that I had let him go for many months with

all that fluid in his ears,unable to hear properly. These kinds of things keep

popping up and make me wish we had a really good pediatrician. If you have any

other questions, feel free to email.

All the best,

[Guest guest]

If you feel lost physiatrist or Dev ped really helped me or like a CP clinic.

Diane

[Guest guest]

, My daughter is 5 and was diagnosed at 7 mos and has tons of therapy to

help her. She has hemiplegia on her left side and does have some learning

differences that we know of so far. When she was given the diagnosis the

Neurologist told me a story about a young man in college (21y) that had grown up

on a farm with some challenges and had his first seizure and his MRI looked

similar to my daughters it was reassuring. I read this book The Brain that

Changes itself it really inspired to understand what rehab can mean

http://www.normandoidge.com/normandoidge/MAIN.html . I just want to say to you

that this diagnosis does no change who you are it is just a reason for your

different abilities. In your local children's hospital their should be a

transition clinic or a physiatrist that could offer you some assistance on being

as independent as you can. Their are many tools like the 504 to accommodate your

education and many agencies that offer programs in your area. I work with young

adults in my job that have many challenges but we help them seek independence

with many programs ie vocational rehab, medicaid wavier, SSI, ARC, Easter Seals

and United Cerebral Foundation. Good Luck!Diane

To: polymicrogyria

From: alessioanderson@...

Date: Fri, 25 Nov 2011 22:13:12 +0000

Subject: Re: new to group

Hi ,

Thanks for the reply. My neurologist, who's been treating me since we discovered

my seizures, consulted with the radiologist and several others before telling

me. He also said he was going to look around for another consult, to be sure. I

think he said I have it in parts of my temporal and parietal lobes.

I'm doing okay. I've looked into the condition, and it's really helpful to know

why I've always struggled. My parents aren't around, but I do have my twin

brother, who's never had the same problems I have with hearing, speech, sensory

perception, motor control, and so on. He's been fantastic, always helping me

out, but now more than ever.

Thank you for the recommendation! I looked Rob up, and read his blog and book.

It helped a lot.

>

> Hi, . I have heard that many adults are diagnosed on a head scan

> following a traffic accident or something similar. Many people who have

> " spots " of PMG have experienced few symptoms of it, in contrast with many

> of the children whose parents' write here. " Schuyler's Monster " by

> Rummel-Hudson is a good read - written by a dad, describing the first

> several years of his daughter's life and their path to the eventual

> diagnosis. I wonder if you might find it useful as you contemplate what

> this means for you. One other thing - when my son was still in the process

> of diagnosis and consultation, several different doctors made note of how

> relatively difficult PMG can be to diagnose. It's really about the quality

> of the MRI and the experience of the (neuro) radiologist. How's everything

> going for you since this came up?

>

>

> (mom to 5)

>

> --

> Out of the Gray

>

> Serving caregivers who give their all.

>

> Donate here: http://stylewithpurpose.blogspot.com/

>

>

>