Hello

[Guest guest]

Welcome Charlotte!

--- Charlotte wrote:

> Hello Everyone,

> I am new to the group, a dear sweet friend told me

> about it. I look

> forward to learning more, and growing as a person.

> Thank you for

> welcoming me.

> Charlotte

>

>

=====

Dance , when you're broken open

Dance, if you've torn the bandage off

Dance in the middle of the fighting.

Dance, when you're perfectly free.

--Rumi

[Guest guest]

Hello Charlotte!

Welcome to the LWI group!

As a dear sweet friend of yours, I am happy

to see you joined this merry band of " sweeties "

and " derelicts " .

Best Wishes,

Charlie

> Hello Everyone,

> I am new to the group, a dear sweet friend told me about it. I

look

> forward to learning more, and growing as a person. Thank you for

> welcoming me.

> Charlotte

[Guest guest]

Subject: Hello

> As a newbie to this group, is there a " glossary " somewhere that explains

all

> the acronyms? For example, NADA, FOO and KO seem to be used a lot.

Dear Cheryl:

The war is not a trivial issue, but it is not completely relivant to

all conversations. Just spent the day with my friend Pete, and

he and I disagree, but I'm not in his face about it, and he's not

in mine, and we get along fine despite our opposite politics.

As for the acronyms, Edith posts a full explanation each month,

but here's a short list.

FOO -- Family Of Origin, as opposed to family of choice

Nada -- " Not A " Mother, and Fada, not a father. Also means

zero or nothing in Spanish. A nice pun.

KO -- " Kid Of " a Borderline

Hope that helps. Please feel free to write me offline.

Thanks for writing. I know it's hard to do.

--Maxx.

[Guest guest]

> The war is not a trivial issue, but it is not completely relevant to

> all conversations.

I really believe that I could have a friendly relation with somebody

who disagreed with me on this issue, but I am afraid to meet

Americans now. I have had several very bad encounters where I opened

my mouth and got treated like a traitor. I am told there are a

number of other Americans living in my town but I haven't met a

single one and don't want to. When I hear American English being

spoken I try to keep quiet or stick to French and hope my accent

isn't noticed.

I believe that America is more divided now than at any time since the

Civil War. I hope it can get past that.

- Dan

[Guest guest]

> The war is not a trivial issue, but it is not completely relevant to

> all conversations.

I really believe that I could have a friendly relation with somebody

who disagreed with me on this issue, but I am afraid to meet

Americans now. I have had several very bad encounters where I opened

my mouth and got treated like a traitor. I am told there are a

number of other Americans living in my town but I haven't met a

single one and don't want to. When I hear American English being

spoken I try to keep quiet or stick to French and hope my accent

isn't noticed.

I believe that America is more divided now than at any time since the

Civil War. I hope it can get past that.

- Dan

[Guest guest]

Re: Hello

,

Has an MD see your Mom? Most places have either County nurses or you

pay a fee for an MD service that will come to the home. You also sound

like you are about ready for Hospice service if you want it. THey also

have medical people who come to the home. Having Hospice come and

checking out what they have to say, does not mean you have to go on.

You can see if she will be eligible and then decide if you want to put

her on.

You might have a better feel for what they say regarding you Mom. Not

eating and sleeping for three days at a time sound pretty far down the

road.

Do not know if this is helpful but hope so.

Donna

[Guest guest]

Hello Diane, I have not been to that Doctor, I am on my second one. was diagnosed in September and today it the 1st day I am taking ATD. Methimaxole, 10mg, aks Tapaole. and also Toprol 25mg for heart palps. No one knows your body more than you. When we get sick, generally we go to the doctors for the name of our ailment and for confirmation. So if you feel that other things are a result triggered by something, then it is probably true. Someone told me that everybody is different (true enough) but If a person as not experienced a certain thing, then they really can't rule it out, can they. Go ahead and check out this support group. It has helped me tremendously as I was almost talked into the RAI treatment. My latest lab is T3 Total

464 Normal 60-181 T3 Uptake 41 22-35 T4 Free 0.8-1.8 TSH <0.01 Hope this helps AudreyDiane Whitaker wrote: Hi Everyone! Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of

Houston). I have just recently started looking online to see if I can get any helpful information on my type of health situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism >

digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern. I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him? Here are my latest lab results: T4 Free 1.3 (0.61-1.76) TSH 1.024 (0.35-5.5) Triiodothyronine 85 (85-205) Thanks for listening and please let me know if you have any advice. Lynn

[Guest guest]

Lynn,

Welcome! First dump the Endo. They are the worst. Most people get better

treatment from a GP. Your digestive problems are hypo. If you doctors

don't understand this, then you need to run far away from them. I would go

to a GP demand Armour.

I'm in Missouri City. I work and go to church in Pearland.

Kate

At 12:22 PM 1/26/2006, you wrote:

>Hi Everyone!

>Thanks for including me in your group. My nickname is Lynn and I live in

>Friendswood (South of Houston). I have just recently started looking

>online to see if I can get any helpful information on my type of health

>situation. I have been to five endos (first appointment with the sixth

>one is on 2/27) and am still not where I want to be. I currently take

>88mcg of Levoxyl. I also take many supplements that I get from a

>wholistic doctor. There are two problems that I struggle with: One - I

>feel like my thyroid fluctuates causing me to have good days followed by

>bad days and on and on and on... The doctors insist that is not

>possible. I haven't felt 100% since starting the thyroid replacement

>(I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too

>high with that. Two - I continue to have digestive problems (nausea,

>bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and

>found nothing. I think the thyroid has something to do with it

>(thyroid > metabolism > digestion), but no one else agrees with me. It

>feels like when I eat, the food just sits in my stomach and causes me to

>feel bad. I've tried manipulating/restricting my diet in so many ways that

>I want to scream - still no pattern.

>

>I have just stared looking into taking T3 along with the my Levoxyl. When

>I asked my doctor about it, he said that I don't need any T3 because my

> " numbers look fabulous " and that they will see me in June. Hence we move

>to doctor #6. I've made an appointment with Dr. in

>Houston. Has anyone been to him?

>

>Here are my latest lab results:

>T4 Free 1.3 (0.61-1.76)

>TSH 1.024 (0.35-5.5)

>Triiodothyronine 85 (85-205)

>

>Thanks for listening and please let me know if you have any advice.

>

>Lynn

[Guest guest]

Actually, Lynn, that third # DOES look terrible, and it IS your Free T3 (triiodothyronine), and you ARE on just exactly the right track, to boot. The way we know this is this----Look at your Free T4, it is in a mid to higher range, not high but midrange or higher. Normally, with a T4 this high, the Free T3 would be very much proportionally higher, but yours, instead is sitting at rock bottom, right at the abnormally low cusp, so count it low. In other words, you are not converting your T4 to T3 properly, and T3 is the form that is the most used, so you ARE right, you do need T3, it is so obvious from this testing. Do you take selenium or eat high amts of Brazil nuts or the like? Selenium is well known to help with T4 to T3 conversion. As a matter of fact, we can't convert without it. That's just one angle, that prevents you from converting sufficiently. Looking at YOUR test results, I'd say that you probably need the Armour Thyroid or T3 added to your T4. What about liver problems or liver enzymes?

Hello

Hi Everyone!

Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of Houston). I have just recently started looking online to see if I can get any helpful information on my type of health situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism > digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern.

I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him?

Here are my latest lab results:

T4 Free 1.3 (0.61-1.76)

TSH 1.024 (0.35-5.5)

Triiodothyronine 85 (85-205)

Thanks for listening and please let me know if you have any advice.

Lynn

[Guest guest]

That range is for a Total T3, not a Free T3. And yes it is in the basement. I suspect her Free T3 would be even lower. wrote: Actually, Lynn, that third # DOES look terrible, and it IS your Free T3 (triiodothyronine), and you ARE on just exactly the right track, to boot. The way we know this is this----Look at your Free T4, it is in a mid to higher range, not high but midrange or higher. Normally, with a T4 this high, the Free T3 would be very much proportionally higher, but yours, instead is sitting at rock bottom, right at the abnormally low cusp, so count it low. In other words, you are not converting your T4 to T3

properly, and T3 is the form that is the most used, so you ARE right, you do need T3, it is so obvious from this testing. Do you take selenium or eat high amts of Brazil nuts or the like? Selenium is well known to help with T4 to T3 conversion. As a matter of fact, we can't convert without it. That's just one angle, that prevents you from converting sufficiently. Looking at YOUR test results, I'd say that you probably need the Armour Thyroid or T3 added to your T4. What about liver problems or liver enzymes? Hello Hi Everyone! Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of Houston). I have just recently started looking online to see if I can get any helpful information on my type of health

situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism > digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel

bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern. I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him? Here are my latest lab results: T4 Free 1.3 (0.61-1.76) TSH 1.024 (0.35-5.5) Triiodothyronine 85 (85-205) Thanks for listening and please let me

know if you have any advice. Lynn

What are the most popular cars? Find out at Yahoo! Autos

[Guest guest]

hey just wanted to let ya know i'm so sorry to hear about your loss and i'm

praying for you. i know you don't even know me but i can't imagine what you must

be going through right now. i started rituxan about 3 mo. ago and it hasn't

worked yet. how long did it take you initally to start working for you? i hope

that when you get your next treatment that you will be feeling better soon but

as we all know stress doesn't help. sometimes i say how can you live without

stress!! take care of yourself monique

wrote: Hello everyone,

I know I haven't post in a long while, so I thought I would let all

know how I am doing. Today is a very bad day for me. I recieved a

phone call this morning from my little sister's mom informing me that

my dad had passed away. I hadn't talked or seen my dad since I was

younger. But He was still my dad and I did love him no matter what. I

do remember a little bit about him being there when I was younger. I

will be leaving for washington state on the 23rd. I have all ready

talked to my grandma that I hadn't talked to for a few years now, but

also got more bad news while talking to her. She informed me that my

dad's younger brother passed away two months ago. So today is just

not a good day.

As for the rest of me. I do believe the rituxan is starting to wear

off. I go in on tuesday for a injection. At that time I will set up a

date for another rituxan treatment. Also I am still trying to decided

if I will have my other shoulder replaced this year. The last couple

of weeks it has givin me a lot of trouble, but I do believe that is

because of the rituxan wearing off. I was really feeling great there

for awhile. Better then I had for some time. Well I am going to go

for now. until next time take care.

__________________________________________________

[Guest guest]

hang in there will b praying for u

[Guest guest]

Hi Natasha

I am sorry I am a bit late replying. I am very sorry to hear that your

friend is suffering so much and has been for a very long time. It must be

so difficult with 3 small children. I wondered if there might be someone

who could lend her a laptop just for a short while so that she could see if

she was able to operate one as I am sure that if she could communicate with

other stills sufferers she would not feel so alone and of course we would be

more than happy to help if we could.

I would like to add that I think she is very lucky to have such a caring

friend as you.

Best wishes to you both. Take care

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of natasha peebles

Sent: 09 January 2007 09:42

To: stillsdisease

Subject: hello

hi i would just like to introduce myself

my name is natasha and i live in north east england and it is my best friend

who was diagnosed with stills in jan 05. im not quite sure what meds she is

currently taking, however i know she has been on many different types

including methetrexate which didnt really help her. all i do know is that

she has to inject herself, i will ask her tommorrow when i vist her in hosp.

she has been in hospital for most of the past two years as her flares seem

constant. she maybe goes for a few weeks at a time without one at the most.

she is 27 years old and has 3 young children aged 5, 3 and 2 and has been

really ill ever since she was diagnosed. she hasnt got a computer and to be

honest i dont know if she would be well enough to use one as she spends alot

of her time in bed but im going to try and persuade her to buy one and join

this group as i believe that she would enjoy being able to swap experiences

and gain comfort from such a warm and supportful group.

natasha

__________________________________________________________

__________________________________________________________

Be the first to hear what's new at MSN - sign up to our free newsletters!

http://www.msn. <http://www.msn.co.uk/newsletters> co.uk/newsletters

[Guest guest]

Hi Natasha

I am sorry I am a bit late replying. I am very sorry to hear that your

friend is suffering so much and has been for a very long time. It must be

so difficult with 3 small children. I wondered if there might be someone

who could lend her a laptop just for a short while so that she could see if

she was able to operate one as I am sure that if she could communicate with

other stills sufferers she would not feel so alone and of course we would be

more than happy to help if we could.

I would like to add that I think she is very lucky to have such a caring

friend as you.

Best wishes to you both. Take care

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of natasha peebles

Sent: 09 January 2007 09:42

To: stillsdisease

Subject: hello

hi i would just like to introduce myself

my name is natasha and i live in north east england and it is my best friend

who was diagnosed with stills in jan 05. im not quite sure what meds she is

currently taking, however i know she has been on many different types

including methetrexate which didnt really help her. all i do know is that

she has to inject herself, i will ask her tommorrow when i vist her in hosp.

she has been in hospital for most of the past two years as her flares seem

constant. she maybe goes for a few weeks at a time without one at the most.

she is 27 years old and has 3 young children aged 5, 3 and 2 and has been

really ill ever since she was diagnosed. she hasnt got a computer and to be

honest i dont know if she would be well enough to use one as she spends alot

of her time in bed but im going to try and persuade her to buy one and join

this group as i believe that she would enjoy being able to swap experiences

and gain comfort from such a warm and supportful group.

natasha

__________________________________________________________

__________________________________________________________

Be the first to hear what's new at MSN - sign up to our free newsletters!

http://www.msn. <http://www.msn.co.uk/newsletters> co.uk/newsletters

[Guest guest]

Annette,

Keep the positive attitude going and don't let anyone get you down!! I know

you will have your days, we all do, but those are just momentary and due to

the stress of having a special needs child. If you have seen the progress

from that is all that matters. Doctors give the worse case scenario and

I wouldn't think a Genetists should be saying those things but people do

like to give their two cents. And you were right in saying that they see our

kids for such a short amount of time and then feel it necessary to tell us

devastating things after we have told them positive things regarding the

progress

of our child. They just don't understand and no one really can unless they

have been in our situation. Have you taken to a Physical Medicine and

Rehabilitation (Physiatrist sp?) doctor? We have found that this doctor has

been able to give us the best information. Another good place for

information is Dr. Dobyns...has her reviewed s records, MRI?? He is out

of

Chicago and works with the Walsh Lab and will review records free of charge via

you sending them in. He does like to see the actual films of the MRI instead

of emailed or scanned onto a CD images. I believe that every child with

these problems our kids have, PMG, CP, Seizures, etc. present differently and

no

two are the same but you know your child better than anyone and if you see

progress then that is progress and more progress can be made. I would ask the

therapists for what they see being able to do in the future. I have

found the therapists to be very valuable in this area of projecting out what

our daughter is going to be able to do because they see numerous kids with

these special conditions and have the knowledge. Another thing to look into is

intense PT like Euro Peds and Suit Therapy and intense schooling at a

Conductive Education center. We are starting at the Conductive Education

center in

Grand Rapids, MI this coming Monday for our first session and I am so

excited. I will post more on what we find out when we are there and are doing

the

program but I have high hopes for this program to help our daughter further

succeed.

Take care,

and Alyssa

[Guest guest]

Annette,

I don't think anyone can tell you what abilities your son will have in the

future and what level of functioning he will achieve. PMG presents differently

in each child. There is a wide range of the degree it affects a child. It ranges

from no symptoms at all to severe mental and physical limitations. There is at

least one adult in this group that has PMG that found out just recently.

I also have a son named with PMG. He is 9 now and doing pretty well. He

talks, runs, does math, plays video games, rides a bike and does pretty much

anything else a normal 9 year old does, just a little slower. The first doctor

we saw after the diagnosis was a developmental pediatrician. She had reviewed

the MRI before seeing . When walked in to the office, she didn't

believe it was him because she thought he would be in a wheelchair. She went on

to tell us that by looking at the MRI only, she assumed would be severely

handicapped.

My point is that you should not allow the experts to tell you that your son will

never do certain things because they just don't know. You have to be realistic

but optimistic and try to help your son the achieve his full potential. My son

is probably an exception, but if we accepted some of the doctors predictions, we

would never had pushed him to achieve because it would just be a waste of time.

-Steve

luvthebuckii wrote: My

son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months

old.

I found this group shortly after his diagnosis and have found it comforting to

know there

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

which gives

me hope and also knowing there are others out there struggling with this

diagnosis as it

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

stories and

your information, as we have gotten little info on PMG from any of our doctors.

You are

truly amazing people.

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

pregnancy. He

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

are contagious.

I suspected something was wrong with his development at around 6 months.

Although his

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

We had a

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

dreaded label

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

contact with

the Walsh lab in Boston and am waiting to hear back from them. Has anyone been

to the

brain malformation clinic in Boston? We are currently petitioning our

insurance to pay for

a visit there. My main hope has been to find where in the spectrum of PMG that

's

condition lays, so that I can be realistic about his development and progress.

Throughout our barrage of appointments the only doctor we have seen thus far

with any

experience with PMG has been the geneticist. We saw him right around 's

first

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

found no

underlying etiology for the PMG. Because he has seemed the only one with info

on PMG, I

was anxious for the 15 month follow up visit that we had yesterday. At that

appointment,

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

functioning and

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

We have

received nothing but good reports from our therapists and EI teacher (who wrote

in large

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

does not

consistently roll over or roll over on his own. His head control and reaching

abilities have

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

troubles. He

eats stage 2 and 3 baby foods and many mashed table foods. He does not feed

himself

with his fingers, but has occasionally wrestled his spoon away from whomever is

feeding

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

He sits in a

tripod and tries to lift his arms to reach while sitting. He doesn't talk or

say consonants,

but he does try to " aaaah " back and forth with myself or my husband when we

talk with

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

are doing. He

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

his

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

My question for you the experts is, what are real expectations for a 15 month

old with

PMG and his current accomplishments? I refuse to believe I am wasting my time

with the

therapy appts. and all the work we do with him at home. I understand that he

probably

won't go to college or play sports, but there has to be something in between.

My

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

for 10

minutes, not by working with for 10 minutes. I too put more weight in

what his

therapists say because they work with him more often and have developed a

relationship

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

as well and

they do not look at diagnosis when working with the kids. I'll admit that is

probably a

good thing, but still would like to hear some input from the experts in this

area - you the

parents that work with these special kids everyday.

I am sorry that this message was so long, but appreciate you taking the time to

read about

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

Thank you and God bless all of the children and families dealing with PMG and

other

disabilities.

Annette

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

Have a burning question? Go to Yahoo! Answers and get answers from real people

who know.

[Guest guest]

Annette, Steve is right. Don't listen to people if they tell you that

will never amount to anything. My daughter Crystal is also

almost 9 years old. She's not doing as well as Steve's is, but

she can walk & she does love to play. Her smile can light up a room.

I believe that the reason she hasn't developed as far as did,

is because of her seizures. They have never been completely

controlled, no matter how hard her doctors ( & us ) have tried.

Hang in there, you will get through this.

Love to you all...

& Crystal Aquielle - almost 9 years old - BPP grade 3 -

intractable seizures - g-tube - and VNS - and a smile that lights up

our world.

My son was diagnosised

in early Oct. 2006 with PMG. He is almost 15 months old.

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

comforting to know there

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

and thriving which gives

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

with this diagnosis as it

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

sharing your stories and

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

our doctors. You are

> truly amazing people.

>

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

uneventful pregnancy. He

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

his smiles are contagious.

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

months. Although his

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

my concerns. We had a

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

us our dreaded label

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

have been in contact with

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

Has anyone been to the

> brain malformation clinic in Boston? We are currently petitioning

our insurance to pay for

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

spectrum of PMG that 's

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

and progress.

>

> Throughout our barrage of appointments the only doctor we have

seen thus far with any

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

around 's first

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

they have found no

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

one with info on PMG, I

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

yesterday. At that appointment,

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

high functioning and

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

devastated. We have

> received nothing but good reports from our therapists and EI

teacher (who wrote in large

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

currently does not

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

and reaching abilities have

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

feeding troubles. He

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

does not feed himself

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

from whomever is feeding

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

stuck to it. He sits in a

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

doesn't talk or say consonants,

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

husband when we talk with

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

what others are doing. He

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

objects and shakes his

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

>

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

a 15 month old with

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

wasting my time with the

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

understand that he probably

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

in between. My

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

seeing for 10

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

more weight in what his

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

developed a relationship

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

his diagnosis as well and

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

admit that is probably a

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

experts in this area - you the

> parents that work with these special kids everyday.

>

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

taking the time to read about

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

time.

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

with PMG and other

> disabilities.

> Annette

>

>

>

>

>

>

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

> Have a burning question? Go to Yahoo! Answers and get answers from

real people who know.

>

>

[Guest guest]

Annette,

Do not listen to the doctors!!! Jenna's doctors all told us the same thing about

Jenna but she has made tremendous progress and her neurologist was VERY

surprised to see her doing what she is doing now.

Jenna is 4 and a half years old. She walks, she talks (delayed but getting

better), she eats normal food and is not tube fed. However she is not too good

with utensils yet, she is making progress there too. She had seizures for awhile

but they were controlled by medicine and is now seizure free. She is not potty

trained but we believe that she will be some day. Basically, Jenna is a 2 year

old in a 4 year old body. Jenna is in O.T., P.T. and on a waiting list to enter

speech therapy again. She attends special needs preschool 4 days a week and will

go to special needs Kindergarten next school year.

All of our kids are different. Some are more severely affected than others but

to look at Jenna's MRI, you would think she would be a vegetable. That is what

her Neurologist said to us. Dr Dobyns said over 3/4 of her brain was affected

with PMG and he even gave us a grim outlook but Jenna has defied them all. Our

kids have strong spirits...do not let the doctors dictate your sons

future...allow God to do that.

I hope that helps and good luck with all the challenges that lie ahead. We will

be here for your support.

and Jenna

Hello

My son was diagnosised in early Oct. 2006 with PMG. He is almost 15

months old.

I found this group shortly after his diagnosis and have found it comforting to

know there

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

which gives

me hope and also knowing there are others out there struggling with this

diagnosis as it

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

stories and

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

doctors. You are

truly amazing people.

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

pregnancy. He

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

are contagious.

I suspected something was wrong with his development at around 6 months.

Although his

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

We had a

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

dreaded label

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

contact with

the Walsh lab in Boston and am waiting to hear back from them. Has anyone been

to the

brain malformation clinic in Boston? We are currently petitioning our

insurance to pay for

a visit there. My main hope has been to find where in the spectrum of PMG that

's

condition lays, so that I can be realistic about his development and progress.

Throughout our barrage of appointments the only doctor we have seen thus far

with any

experience with PMG has been the geneticist. We saw him right around 's

first

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

found no

underlying etiology for the PMG. Because he has seemed the only one with info

on PMG, I

was anxious for the 15 month follow up visit that we had yesterday. At that

appointment,

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

functioning and

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

have

received nothing but good reports from our therapists and EI teacher (who

wrote in large

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

does not

consistently roll over or roll over on his own. His head control and reaching

abilities have

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

troubles. He

eats stage 2 and 3 baby foods and many mashed table foods. He does not feed

himself

with his fingers, but has occasionally wrestled his spoon away from whomever

is feeding

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

He sits in a

tripod and tries to lift his arms to reach while sitting. He doesn't talk or

say consonants,

but he does try to " aaaah " back and forth with myself or my husband when we

talk with

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

are doing. He

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

his

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

My question for you the experts is, what are real expectations for a 15 month

old with

PMG and his current accomplishments? I refuse to believe I am wasting my time

with the

therapy appts. and all the work we do with him at home. I understand that he

probably

won't go to college or play sports, but there has to be something in between.

My

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

for 10

minutes, not by working with for 10 minutes. I too put more weight in

what his

therapists say because they work with him more often and have developed a

relationship

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

as well and

they do not look at diagnosis when working with the kids. I'll admit that is

probably a

good thing, but still would like to hear some input from the experts in this

area - you the

parents that work with these special kids everyday.

I am sorry that this message was so long, but appreciate you taking the time

to read about

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

Thank you and God bless all of the children and families dealing with PMG and

other

disabilities.

Annette

[Guest guest]

I will tell you this. My son who is 18 months old has PMG on 80% of his

brain. Every child is different.

The dr.s say that if they just looked at his MRI they would expect to walk

into the examination room and see a child in a vegetative state not being

able to do anything. does have delays, but is also doing many

many things that the dr's are all shocked that he is doing. He smiles, he

knows who we are, he is a wonderful child. Just because someone labels your

child with PMG, don't give up. Start therapies, do as much with your child

as you can...and don't stop giving working at it.

Just wanted to let you know that the dr's aren't always right, and they

can't see into the future.

Mom to

www.danielspranger.com

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of luvthebuckii

Sent: Saturday, January 27, 2007 8:35 AM

To: polymicrogyria

Subject: Hello

My son was diagnosised in early Oct. 2006 with PMG. He is almost 15

months old.

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

to know there

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

thriving which gives

me hope and also knowing there are others out there struggling with this

diagnosis as it

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

your stories and

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

doctors. You are

truly amazing people.

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

pregnancy. He

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

are contagious.

I suspected something was wrong with his development at around 6 months.

Although his

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

concerns. We had a

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

dreaded label

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

in contact with

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

been to the

brain malformation clinic in Boston? We are currently petitioning our

insurance to pay for

a visit there. My main hope has been to find where in the spectrum of PMG

that 's

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

progress.

Throughout our barrage of appointments the only doctor we have seen thus far

with any

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

's first

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

found no

underlying etiology for the PMG. Because he has seemed the only one with

info on PMG, I

was anxious for the 15 month follow up visit that we had yesterday. At that

appointment,

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

functioning and

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

We have

received nothing but good reports from our therapists and EI teacher (who

wrote in large

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

currently does not

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

reaching abilities have

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

troubles. He

eats stage 2 and 3 baby foods and many mashed table foods. He does not feed

himself

with his fingers, but has occasionally wrestled his spoon away from whomever

is feeding

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

He sits in a

tripod and tries to lift his arms to reach while sitting. He doesn't talk or

say consonants,

but he does try to " aaaah " back and forth with myself or my husband when we

talk with

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

are doing. He

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

shakes his

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

My question for you the experts is, what are real expectations for a 15

month old with

PMG and his current accomplishments? I refuse to believe I am wasting my

time with the

therapy appts. and all the work we do with him at home. I understand that he

probably

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

between. My

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

for 10

minutes, not by working with for 10 minutes. I too put more weight in

what his

therapists say because they work with him more often and have developed a

relationship

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

diagnosis as well and

they do not look at diagnosis when working with the kids. I'll admit that is

probably a

good thing, but still would like to hear some input from the experts in this

area - you the

parents that work with these special kids everyday.

I am sorry that this message was so long, but appreciate you taking the time

to read about

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

Thank you and God bless all of the children and families dealing with PMG

and other

disabilities.

Annette

[Guest guest]

I agree that the seizures are the most debilitating aspect of PMG. My was

doing very well until the seizures started at age 5. He had no delays except the

weakness in his right side. He was in normal kindergarten doing well. After the

seizures started, he regressed.

I think it is important to have an aggressive treatment plan for the seizures

since they seem to do the most damage to our children.

-Steve

wrote: Annette,

Steve is right. Don't listen to people if they tell you that

will never amount to anything. My daughter Crystal is also

almost 9 years old. She's not doing as well as Steve's is, but

she can walk & she does love to play. Her smile can light up a room.

I believe that the reason she hasn't developed as far as did,

is because of her seizures. They have never been completely

controlled, no matter how hard her doctors ( & us ) have tried.

Hang in there, you will get through this.

Love to you all...

& Crystal Aquielle - almost 9 years old - BPP grade 3 -

intractable seizures - g-tube - and VNS - and a smile that lights up

our world.

My son was diagnosised

in early Oct. 2006 with PMG. He is almost 15 months old.

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

comforting to know there

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

and thriving which gives

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

with this diagnosis as it

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

sharing your stories and

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

our doctors. You are

> truly amazing people.

>

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

uneventful pregnancy. He

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

his smiles are contagious.

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

months. Although his

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

my concerns. We had a

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

us our dreaded label

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

have been in contact with

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

Has anyone been to the

> brain malformation clinic in Boston? We are currently petitioning

our insurance to pay for

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

spectrum of PMG that 's

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

and progress.

>

> Throughout our barrage of appointments the only doctor we have

seen thus far with any

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

around 's first

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

they have found no

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

one with info on PMG, I

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

yesterday. At that appointment,

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

high functioning and

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

devastated. We have

> received nothing but good reports from our therapists and EI

teacher (who wrote in large

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

currently does not

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

and reaching abilities have

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

feeding troubles. He

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

does not feed himself

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

from whomever is feeding

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

stuck to it. He sits in a

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

doesn't talk or say consonants,

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

husband when we talk with

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

what others are doing. He

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

objects and shakes his

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

>

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

a 15 month old with

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

wasting my time with the

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

understand that he probably

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

in between. My

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

seeing for 10

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

more weight in what his

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

developed a relationship

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

his diagnosis as well and

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

admit that is probably a

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

experts in this area - you the

> parents that work with these special kids everyday.

>

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

taking the time to read about

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

time.

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

with PMG and other

> disabilities.

> Annette

>

>

>

>

>

>

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

> Have a burning question? Go to Yahoo! Answers and get answers from

real people who know.

>

>

[Guest guest]

Annette,

My little guy, Quinn, turned one the beginning of this month. He

doesn't sit by himself yet. He rolls over sometimes, but seems

hampered by seizure activity. Though the meds work quite well, a

virus sort of knocks him back. He'll lose tone, focus, and have

trouble with sound. He is still nursing (quite well), eats baby

cereal, will start fruits and veggies soon, but has trouble with

gagging if he feels something unexpected in his mouth--the first bite

is always no fun. His vision is about 20/80 - 20/128, depending on

illness. He too, has made leaps of progress past what our neuro

initially predicted, and the fact that he continues to do so is huge

(as I'm sure you know).

One of the things I've appreciated most about my son's therapists is

that they've unequivocally stated that no two kids are alike and that

a " diagnosis " (which is really just a description of findings on

film) is only so useful. When I was just thunderstruck by the

prediction of severe MR from the neuro (this despite Quinn's cheerful

interaction), the PT said, " You know, we love neurologists, but they

don't know everything. Only Quinn will be able to tell us what he

can do. " At the last neuro visit, the doc revised himself a little--

commenting on how clearly happy Quinn is to be here. That's also a

big deal. He stated then that around three years of age one can know

more about what a reasonable expectation of progress in development

might be, but that it's a very individual thing.

The fact that you pushed for specialists in spite of the

pediatrician's blowing you off indicates that you are just the mama

your little guy needs. Find a doc who will back you and your good

instincts--starting with admitting that he/she will likely never see

another kid with the particular brain anomaly your son has. The

therapy is helping, you know it is. The work is so, so hard, but

worth it.

The geneticist should be able to put you in touch with Dr. Dobyns.

Our geneticist knows him and got Quinn enrolled in the study--so much

of this stuff that there is to know about PMG comes in fits and

starts. Sometimes it seems like little bits of useful info sort of

accidentally escape from the professionals while we're in the office

and it's up to me to then track the terms/statements down and

interpret them. I think often they're so blown away themselves by

these findings (even with so many years of training) that they forget

that the parents (often lay people) are smart and curious and even

more, *need* as much information as possible to advocate effectively

for our kids. Knowledge is power.

I think it's possible too that certain professionals think that

giving a parent such serious news requires that they go a little

overboard and kind of blow our minds. I think that because I didn't

say something like " Oh no! " that the neuro thought I wasn't getting

what he was saying. So he went over it again, telling me that Quinn

will likely never be able to live on his own, yadda yadda. I get it,

really I do. Sure it takes some time to sink in, but how about some

real and helpful info? I mean, surely there's stuff to do? I think

they don't have much to offer, so they can't. I think about the

future generations that will benefit from Dr. Dobyns' work and our

participation in it.

Eh, that got long, sorry. Here's hoping for continued progress for

.

Blessings to you,

http://duramater5.blogspot.com/

>

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

almost 15 months old.

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

comforting to know there

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

and thriving which gives

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

this diagnosis as it

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

sharing your stories and

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

our doctors. You are

> truly amazing people.

>

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

uneventful pregnancy. He

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

his smiles are contagious.

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

months. Although his

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

my concerns. We had a

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

us our dreaded label

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

have been in contact with

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

anyone been to the

> brain malformation clinic in Boston? We are currently petitioning

our insurance to pay for

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

of PMG that 's

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

and progress.

>

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

thus far with any

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

around 's first

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

they have found no

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

one with info on PMG, I

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

yesterday. At that appointment,

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

high functioning and

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

devastated. We have

> received nothing but good reports from our therapists and EI

teacher (who wrote in large

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

currently does not

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

and reaching abilities have

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

feeding troubles. He

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

not feed himself

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

whomever is feeding

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

stuck to it. He sits in a

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

doesn't talk or say consonants,

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

when we talk with

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

what others are doing. He

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

and shakes his

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

>

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

a 15 month old with

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

wasting my time with the

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

understand that he probably

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

in between. My

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

seeing for 10

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

weight in what his

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

developed a relationship

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

his diagnosis as well and

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

admit that is probably a

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

experts in this area - you the

> parents that work with these special kids everyday.

>

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

the time to read about

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

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

with PMG and other

> disabilities.

> Annette

>

[Guest guest]

Annette,

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

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

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

Kennedy, if they have a bad additude they get kicked to the curb. NO ONE is

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

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

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

and Kennedy(7yrs.,pmg)

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

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Hello

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

>

>My son was diagnosised in early Oct. 2006 with PMG. He is almost 15

>months old.

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

>to know there

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

>thriving which gives

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

>diagnosis as it

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

>your stories and

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

>doctors. You are

>truly amazing people.

>

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

>pregnancy. He

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

>smiles are contagious.

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

>Although his

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

>concerns. We had a

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

>dreaded label

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

>been in contact with

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

>been to the

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

>insurance to pay for

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

>that 's

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

>progress.

>

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

>far with any

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

>'s first

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

>found no

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

>info on PMG, I

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

>that appointment,

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

>functioning and

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

>devastated. We have

>received nothing but good reports from our therapists and EI teacher (who

>wrote in large

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

>currently does not

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

>reaching abilities have

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

>troubles. He

>eats stage 2 and 3 baby foods and many mashed table foods. He does not

>feed himself

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

>whomever is feeding

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

>it. He sits in a

>tripod and tries to lift his arms to reach while sitting. He doesn't talk

>or say consonants,

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

>talk with

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

>others are doing. He

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

>shakes his

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

>

>My question for you the experts is, what are real expectations for a 15

>month old with

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

>time with the

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

>he probably

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

>between. My

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

> for 10

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

>in what his

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

>relationship

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

>diagnosis as well and

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

>is probably a

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

>this area - you the

>parents that work with these special kids everyday.

>

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

>time to read about

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

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

>and other

>disabilities.

>

>

_________________________________________________________________

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[Guest guest]

We saw a developmental specialist from NY years ago too...and that was also a

ridiculous waste of our time. is like a canvas...and we dont know what

colors are going to be painted there.... but we believe in him. He may not be

able to speak...but you have to look past that, because there is a hidden

message there...he has a way to communicate...I truly believe they all do...you

just have to NOT label them the way the rest of the world does with " normal "

children. Acceptance of their abilities..focus on their QUALITY of life...and

they are the ones who will help you do that. NOT some half wit doctor who

doesnt live with your child day in and day out.

Have faith...believe in .. he will surprise you...and amaze you... I

found that when I was disappointed at what " wasnt " it blocked me mentally

from progressing and working on the good stuff that was smack in front of our

eyes. SUCH as his eye gaze, his response to certain things, his preference for

certain textures, his ability to understand sign, etc etc.

Good luck... it certainly isnt going to be easy... you may face medical

challenges that are scary...but you get through it...and each step in the

journey is a learning experience.

Get to Dr. Dobyns. Get doctors who look at your child with eyes open... and

be an advocate for everything...everything.. that he needs. No one does it

for you. You have to do it all...they will ask you about the details of the

child... I have a computer journal with every detail spelled out...because I

never wanted to have to try to remember anything.

Sorry... just some advice from a 9 year PMG veteran. God Bless...

...Mom of ... age 9

Jennings wrote:

Annette,

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

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

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

Kennedy, if they have a bad additude they get kicked to the curb. NO ONE is

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

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

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

and Kennedy(7yrs.,pmg)

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

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Hello

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

>

>My son was diagnosised in early Oct. 2006 with PMG. He is almost 15

>months old.

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

>to know there

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

>thriving which gives

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

>diagnosis as it

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

>your stories and

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

>doctors. You are

>truly amazing people.

>

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

>pregnancy. He

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

>smiles are contagious.

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

>Although his

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

>concerns. We had a

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

>dreaded label

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

>been in contact with

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

>been to the

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

>insurance to pay for

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

>that 's

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

>progress.

>

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

>far with any

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

>'s first

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

>found no

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

>info on PMG, I

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

>that appointment,

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

>functioning and

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

>devastated. We have

>received nothing but good reports from our therapists and EI teacher (who

>wrote in large

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

>currently does not

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

>reaching abilities have

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

>troubles. He

>eats stage 2 and 3 baby foods and many mashed table foods. He does not

>feed himself

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

>whomever is feeding

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

>it. He sits in a

>tripod and tries to lift his arms to reach while sitting. He doesn't talk

>or say consonants,

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

>talk with

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

>others are doing. He

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

>shakes his

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

>

>My question for you the experts is, what are real expectations for a 15

>month old with

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

>time with the

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

>he probably

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

>between. My

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

> for 10

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

>in what his

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

>relationship

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

>diagnosis as well and

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

>is probably a

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

>this area - you the

>parents that work with these special kids everyday.

>

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

>time to read about

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

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

>and other

>disabilities.

>

>

__________________________________________________________

Laugh, share and connect with Windows Live Messenger

http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine\

-msn.com/messenger/launch80/default.aspx?locale=en-us & source=hmtagline

Ann Hasselberger

District Leader

Primerica Financial Services

1 (203)788-9602

jhasselberger@...

www.primerica.com

www.citigroup.com

[Guest guest]

Steve, don't I know it. We have done everything humanly possible to

try to control her seizures. We were lucky enough to be able to get

an epileptologist to take her case. He suggested the VNS device. She

has had it for about 4 years now. The battery failed about 6 mos.

ago. As soon as the doctor realized that it wasn't working right, she

had a new one installed within a few days. Unfortunately, by then the

damage was done. It takes awhile for them to get the settings back to

where they were. Her seizures changed, & now she gets tonic clonics

when that was the one seizure type that she didn't have before. <

sigh > All we can do is keep on keeping on. Crystal was also doing

fairly well during the 2 year period that she didn't have seizures.

She was progressing, and we had hope for her. Now, it takes all of

our energy just to care for her & try to keep her happy.

With love to you, , & all the little ones...

& Crystal Aquielle

My son was

diagnosised

> in early Oct. 2006 with PMG. He is almost 15 months old.

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

it

> comforting to know there

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

basis

> and thriving which gives

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

> with this diagnosis as it

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

for

> sharing your stories and

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

of

> our doctors. You are

> > truly amazing people.

> >

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

> uneventful pregnancy. He

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

and

> his smiles are contagious.

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

6

> months. Although his

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

on

> my concerns. We had a

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

gave

> us our dreaded label

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

little. I

> have been in contact with

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

> Has anyone been to the

> > brain malformation clinic in Boston? We are currently

petitioning

> our insurance to pay for

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

> spectrum of PMG that 's

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

development

> and progress.

> >

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

> seen thus far with any

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

> around 's first

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

so

> they have found no

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

only

> one with info on PMG, I

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

> yesterday. At that appointment,

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

be

> high functioning and

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

was

> devastated. We have

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

> teacher (who wrote in large

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

> currently does not

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

control

> and reaching abilities have

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

had

> feeding troubles. He

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

> does not feed himself

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

> from whomever is feeding

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

> stuck to it. He sits in a

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

> doesn't talk or say consonants,

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

> husband when we talk with

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

in

> what others are doing. He

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

> objects and shakes his

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

> >

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

for

> a 15 month old with

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

> wasting my time with the

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

> understand that he probably

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

something

> in between. My

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

on

> seeing for 10

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

> more weight in what his

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

> developed a relationship

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

on

> his diagnosis as well and

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

> admit that is probably a

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

> experts in this area - you the

> > parents that work with these special kids everyday.

> >

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

> taking the time to read about

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

> time.

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

dealing

> with PMG and other

> > disabilities.

> > Annette

> >

> >

> >

> >

> >

> >

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

> > Have a burning question? Go to Yahoo! Answers and get answers

from

> real people who know.

> >

> >

[Guest guest]

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

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

With love to you all...

& Crystal Aquielle...

>

> Annette,

>

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

quality

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

attention

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

believe in

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

NO ONE is

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

to see a

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

had

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

>

>

>

> and Kennedy(7yrs.,pmg)

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

>

>

>

>

>

> >

> >Reply-To: polymicrogyria

> >To: polymicrogyria

> >Subject: Hello

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

> >

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

almost 15

> >months old.

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

comforting

> >to know there

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

and

> >thriving which gives

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

with this

> >diagnosis as it

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

sharing

> >your stories and

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

our

> >doctors. You are

> >truly amazing people.

> >

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

uneventful

> >pregnancy. He

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

his

> >smiles are contagious.

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

months.

> >Although his

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

my

> >concerns. We had a

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

us our

> >dreaded label

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

have

> >been in contact with

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

Has anyone

> >been to the

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

our

> >insurance to pay for

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

spectrum of PMG

> >that 's

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

and

> >progress.

> >

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

seen thus

> >far with any

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

around

> >'s first

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

they have

> >found no

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

one with

> >info on PMG, I

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

yesterday. At

> >that appointment,

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

high

> >functioning and

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

> >devastated. We have

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

teacher (who

> >wrote in large

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

> >currently does not

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

and

> >reaching abilities have

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

feeding

> >troubles. He

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

does not

> >feed himself

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

from

> >whomever is feeding

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

stuck to

> >it. He sits in a

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

doesn't talk

> >or say consonants,

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

husband when we

> >talk with

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

what

> >others are doing. He

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

objects and

> >shakes his

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

> >

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

a 15

> >month old with

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

wasting my

> >time with the

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

understand that

> >he probably

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

in

> >between. My

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

seeing

> > for 10

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

more weight

> >in what his

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

developed a

> >relationship

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

his

> >diagnosis as well and

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

admit that

> >is probably a

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

experts in

> >this area - you the

> >parents that work with these special kids everyday.

> >

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

taking the

> >time to read about

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

time.

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

with PMG

> >and other

> >disabilities.

> >

> >

>

> _________________________________________________________________

> Laugh, share and connect with Windows Live Messenger

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

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

us & source=hmtagline

>