Hello

[Guest guest]

Dear ,

Welcome to our group. I am so sorry to hear of your pain concerning

Bradley, and it brings back memories of my discovery of my son s

disabilities. It seemed so overwhelming. I am glad you found our

group. You will be in my prayers.

Take care, Carlene. mom to 21, (PMG, severe cerebral palsy,

non-verbal, seizures, and a wonderful guy) 18, graduating in

May, and , 15 (both girls are 'A' students)

[Guest guest]

Dear ,

Welcome to our group. I am so sorry to hear of your pain concerning

Bradley, and it brings back memories of my discovery of my son s

disabilities. It seemed so overwhelming. I am glad you found our

group. You will be in my prayers.

Take care, Carlene. mom to 21, (PMG, severe cerebral palsy,

non-verbal, seizures, and a wonderful guy) 18, graduating in

May, and , 15 (both girls are 'A' students)

[Guest guest]

Clare,

Hello to you and your family, we certainly know what your all going through.

Their are very few people in the medical community that seem to know much

about PMG. However, its great you have found this group as it has been a

wealth of information and support to us and thousands of other families.

What I would say is you need more info on the results of the MRI as to the

extent and position of the PMG. We have been very lucky as has only

one sided PMG (Unilateral PMG) and so is developing very well, although a

little delayed. A problem with PMG (please don't let this frighten you) is

that in many cases the children develop epilepsy and this for us was the

most difficult time, Matt is now well controlled with meds. However, you

must get alot more info as to the extent of Bradley's PMG and its location

as I said before.

You will get some excellent info on PMG from this web site

www.lissencephaly.org.uk

We are from the UK and currently live in Italy, but will be returning in

September to live back in England (Derby). Let us know when you have more

details and we can certainly pass on some more help and info. But, in the

mean time keep smiling and be positive, you will find alot of help here.

Best Wishes

Tony, and

Hello

Hello everyone

My name is Maule and I am 33 years old. I live in Lower Earley,

Reading, Berkshire, England with my husband who is 32 and our 3 year

old

daughter Holly and 12 month old son Bradley.

When Bradley was 6/7 months old I became concerned about his slow

development

- he wasn't yet sitting alone as our daughter was at 6 months. He also had a

flattening at the back of his head which I thought may be the reason to his

slow development. At this point we really just thought he was a lazy baby

and

weren't overly concerned. I talked to my Health Visitor about Bradley's

development and the flattening of his head and she said she wasn't concerned

about

his development as he had only just turned 7 months and the flattening was

probably due to his sleeping. She suggested I see my GP to get peace of

mind.

My GP also wasn't too concerned but took the measurement of Bradley's head

circumference at which point it was noted that his head was smaller than it

should

have been for his age. He immediately referred Bradley to a paedeatrician.

Over the next week, I became concerned that Bradley wasn't hearing and took

him back to the GP who also thought the same. We eventually saw a Consultant

Paedeatrician at the Dingley Centre Child Development Centre who noted that

Bradley's development was that of a 3/4 month old at 8 months. She arranged

for a

skull x-ray, blood tests (to check chromosomes) and an MRI scan and Bradley

also had hearing tests. The results of the skull x-ray and blood tests were

normal. Bradley was found to be profoundly deaf in both ears (which we were

told in January of this year) and the results of the brain scan showed he

had PMG

(which we were told on Wednesday of this week). More tests are being

arranged to find the cause, either genetic or because of CMV. My daughter

did have

Chicken Pox when I was in my second trimester of pregnancy with Bradley. We

will also be seeing a neurologist and there will be further blood tests.

We, and our families, are all obviously utterly devastated and trying to

come

to terms with this. Bradley is, though, a very happy and contented little

boy and has made some progress with his physical development and is

exploring

toys more than he was at Christmas. He seems to be coping with his body worn

hearing aid although it is very difficult to tell whether he is hearing

anything

yet. Various people have commented on how much more alert he is. Holly is,

of course, our mainstay through all this - she is an absolute delight and

loves her brother dearly and is very protective of him. Bradley, in return

loves

his big sister very much and constantly watches her and chuckles with

delight

at her.

It would be lovely to talk to other people in the same or similar situation

as us for support and advice and just to not feel so alone.

Regards.

[Guest guest]

:

Welcome. Reading your post reminded me of when I first learned my son, Sam,

had a neurological condition. He was about nine months old when we realized

that he was not using his left hand as he should. Sam also has an older

brother, Darryl, who hit all of his milestones early.

I would just like to reassure you that in time you will get incredible joy

from Bradley's accomplishments, whatever they may be. And the relationship

between your kids may not be a typical one, but you will get to witness the

love they have for each other, and the special ways they will show it. In

time, your family will feel " normal " to you, you'll be doing your own family

things in your own way, and likely find even more joy in them than a

" normal " family does.

Sam is now 12 years old (almost 13) and Darryl is 17. Sam has learning

difficulties, a severe speech delay (communicates mostly with sign

language), and left sided weakness due to his PMG. He also has a love of

race cars and monster trucks, a fabulous sense of humor, the most infectious

laugh ever, friends, and a very loving brother.

I wish you the best of luck, getting through this most difficult time of

adjustment. If you have any questions, don't hesitate to ask. This list is

a wonderful source of support and knowledge.

Christie

[Guest guest]

Hi ,

It is a shocking, and devastating thing to discover. I'd say this much,

though: I've been a part of this loop seven or eight months, and the more

stories I read here the more convinced I am that there is still a great deal

of happiness now, and ahead. And of course, my experience with my own

daughter is the lived proof of this; so too, yours will be with your son.

Best wishes from

and Ali

Io, 20 months

& gt;From: Maule@...

& gt;Reply-To: polymicrogyria

& gt;To: polymicrogyria

& gt;Subject: Hello

& gt;Date: Mon, 22 Mar 2004 10:44:25 EST

& gt;

& gt;Hello everyone

& gt;

& gt;My name is Maule and I am 33 years old.  I live in Lower Earley,

& gt;Reading, Berkshire, England with my husband who is 32 and our 3

year old

& gt;daughter Holly and 12 month old son Bradley.

& gt;

& gt;When Bradley was 6/7 months old I became concerned about his slow

development

& gt;- he wasn't yet sitting alone as our daughter was at 6 months.  He also

had a

& gt;flattening at the back of his head which I thought may be the reason to

his

& gt;slow development.  At this point we really just thought he was a lazy

baby and

& gt;weren't overly concerned.  I talked to my Health Visitor about Bradley's

& gt;development and the flattening of his head and she said she wasn't

concerned about

& gt;his development as he had only just turned 7 months and the flattening

was

& gt;probably due to his sleeping.  She suggested I see my GP to get peace of

mind. 

& gt;My GP also wasn't too concerned but took the measurement of Bradley's

head

& gt;circumference at which point it was noted that his head was smaller than

it should

& gt;have been for his age.  He immediately referred Bradley to a

paedeatrician. 

& gt;Over the next week, I became concerned that Bradley wasn't hearing and

took

& gt;him back to the GP who also thought the same.  We eventually saw a

Consultant

& gt;Paedeatrician at the Dingley Centre Child Development Centre who noted

that

& gt;Bradley's development was that of a 3/4 month old at 8 months.  She

arranged for a

& gt;skull x-ray, blood tests (to check chromosomes) and an MRI scan and

Bradley

& gt;also had hearing tests.  The results of the skull x-ray and blood tests

were

& gt;normal.  Bradley was found to be profoundly deaf in both ears (which we

were

& gt;told in January of this year) and the results of the brain scan showed

he had PMG

& gt;(which we were told on Wednesday of this week).  More tests are being

& gt;arranged to find the cause, either genetic or because of CMV.  My

daughter did have

& gt;Chicken Pox when I was in my second trimester of pregnancy with

Bradley.  We

& gt;will also be seeing a neurologist and there will be further blood tests.

& gt;

& gt;We, and our families, are all obviously utterly devastated and trying to

come

& gt;to terms with this.  Bradley is, though, a very happy and contented

little

& gt;boy and has made some progress with his physical development and is

exploring

& gt;toys more than he was at Christmas.  He seems to be coping with his body

worn

& gt;hearing aid although it is very difficult to tell whether he is hearing

anything

& gt;yet.  Various people have commented on how much more alert he is.  Holly

is,

& gt;of course, our mainstay through all this - she is an absolute delight

and

& gt;loves her brother dearly and is very protective of him.  Bradley, in

return loves

& gt;his big sister very much and constantly watches her and chuckles with

delight

& gt;at her.

& gt;

& gt;It would be lovely to talk to other people in the same or similar

situation

& gt;as us for support and advice and just to not feel so alone.

& gt;

& gt;Regards.

& gt;

& gt;

& gt;

& gt;

& gt;

[Guest guest]

Hello ,

I remember the same feelings your having and the tears. Max is 3

years old now and most of the time we are just happy for him wherever

he is at. Our biggest frusterations now are his seizures which have

been hard to control. Max cannot sit, roll or hold his head up. He

is nonverbal and has a vision impairment and seizures. He is a

beautiful soul however and to all who know him, he is the embodiment

of " innocence " on this earth. He has taught us a great deal and I'm

sure will continue to teach us. We have met some extraordinary

people thru him. I like who I have become because of Max. He has a

wonderful smile and a fantastic giggle. When he is happy, it makes

me so happy. Max has 4 older siblings and a little baby brother.

Just take each day as it comes. Baby steps for our little guys are

giant steps and you will celebrate them all. We have traveled many

places with Max and do all the things families do. You will too.

We will keep you in our prayers.

Joanie

[Guest guest]

Joanne,

I would seek out a 2nd opinion on his gaging problems. It definitely sounds

like its medical in nature and not psychosomatic.

Donna

[Guest guest]

Thank you for your support Donna. I will keep fighting for him.

Joanne

[Guest guest]

53yr old male, fairly good health, maybe having signs of congestive

heart failure due mostly to lack of exercise. Working on quitting

smoking now,,attending classes etc.

I was on Paxil, taking a 40mg daily dose for the most part for mostly

5 years. Did have a few off periods.

I had SAD, social anxiety disorder which the Paxil did wonders for

me. I was like a new person, losing my extreme shyness, anxiety, but

also losing my libido.

I was single so it wasn't so evident as to the damage the Paxil was

doing.

Now after 5 some years being off the Paxil and now married. The lost

libido is very evident as well as impotence.

I've taken various herbals, supplements, you name it! All to no real

positive result.

I have started taking semi-daily dosage's of Cialis which helps with

erections but the libido I believe is all but gone.

That's what I seek is an aide to my libido!!! For myself as well as

my wife who is taking Zoloft.

Thanks for any input

[Guest guest]

I'd like to add, my wife is 52 and going through menopause & as

mentioned, taking Zoloft.

In her case, I'm asking others if there may be something for the

women for helping with a dead libido also.

thanks

>

> 53yr old male, fairly good health, having signs of congestive

> heart failure due mostly to lack of exercise, smoking,etc. Working

on quitting smoking now,,attending classes etc.

> I was on Paxil, taking a 40mg daily dose for the most part for

mostly 5 years. Did have a few off periods. I had SAD, social

anxiety disorder which the Paxil did wonders. I was like a new

person, losing my extreme shyness, anxiety, but

> also losing my libido, erections pretty non-existent.

> I was single so it wasn't so evident as to the damage the Paxil

was doing.

> Now after 5 some years being off the Paxil and now married. The

lost libido is very evident as well as impotence. I've taken various

herbals, supplements, you name it! All to no real positive result.

> I have started taking semi-daily dosage's of Cialis which helps

with erections but the libido I believe is all but gone.

> That's what I seek is an aide to my libido!!! For myself as well

as my wife who is taking Zoloft.

> Thanks for any input

[Guest guest]

Welcome Elaine!Hi my name is Elaine. I live in Minnesota. I have been LLLL for 7 years. I plan on taking the exam in 2011. I have been lurking and reading post for a few weeks thought it was time to introduce myself. I'm really enjoying the wisdom and experience. ElaineSent from my, I'm suppose to be studying but I'm not, iPhone. Leigh Anne O'Connor, IBCLCleighanne625@...www.leighanneoconnor.com