New Member

[Guest guest]

Usually the only time I have to check the 'net is during work hours

(shhhhh!) but I'll make a special point to get to the " Files "

section of this site today! Thanks

Chris

> >

> > Thanks Judy, I'd be interested to hear how things go. I saw my

5th

> > endo last week and she told me that she prescribes only

Synthroid, no

> > Armour. She said Armour is " unstable " and oftentimes " unsafe " .

Huh?

> > She also said adrenals work, or they don't...there is no such

thing

> > as " adrenal fatigue " . As the old saying goes, I'm so sick and

tired

> > of being sick and tired I'm ready to spit nails. And cry. Or

both.

> > I am going to order an adrenal saliva test and see what turns up.

> > Anyway, let me know how things turn out

> >

> > Chris

> >

>

[Guest guest]

Wow...if you could send them my way that would be great! Thanks

bunches!

Chris

texiss33@...

> > Oh wait.....I have the Houston drs list in a file!! If you want

> the

> > names, just say so and I'll send them in your direction!

> >

> >

> > Sue

[Guest guest]

There are very few docs willing to address adrenal issues. But if you look at our Texas Armour Docs list, I have noted the ones that are willing to test and treat. I drive six hours to see Steve in Lubbock. s3r3nitytx wrote: Hi. Some background on me: Dx'd with Hashimoto's about 11 years ago.Taking synthroid + armour. Despite dosage increases with every Dr.visit, unable to achieve stable numbers/relief of symptoms. Last year,found out I have adrenal insufficiency. Taking hydrocortisone. Lookingfor a new doctor, preferably a holistic one, or someone with expertisein

adrenal/thyroid/autoimmune/hormonal imbalance. Work in Progress: Trying to improve my diet (to control hypoglycemiaand better support glands). Curbing my cravings for sweets has provento be especially difficult. I've purchased a slew of supplements andvitamins, but I have trouble remembering to take them. Haven't beenable to start exercising again. My most recent attempts had badresults...I don't think my body is able to handle it yet. Also, ifanyone knows of an opening for a work-at-home position, I'd really beinterested in hearing about it.Anyway, looking forward to finding out some good info on here. Goodhealth to everyone. __________________________________________________

[Guest guest]

Welcome to the group ,

My name Is Sandrea and I've Had chronic fatigue syndrome diagnosed for

just about three years now. I also have fibromyalgia. I haven't worked

since the time I was diagnosed and my diagnosis followed a diagnosis of

a movement disorder caused by a medication that I had withdrawn from. I

also have no thyroid because I had thyroid cancer many years ago. It

sounds like you have a lot going on and I think you will learn a lot

from this group. Stick with us and you will get to know us better. We

are all very supportive of one another and are very talkative about what

is going on in our lives. I am kind of tired right now so I won't write

a whole lot but you will learn more about me and about the rest of us

over time.

Sandrea

[Guest guest]

Welcome to the group! I also have problems getting around outside, even though

I love being out there. I have both a cane and a wheelchair. I mainly use the

cane when outside in the yard. I have several different places set up in my

yard (swing, patio chairs, etc) so no matter which part of the yard I am in..

there is somewhere to sit if necessary. I mainly use the wheelchair for outings

such as grocery shopping, but have to have someone push me as I don't have

enough strength in my arms to do this myself. Am trying to get an electric, but

that doesn't seem to be coming along very fast.

Hope this helps!

Vickie

[Guest guest]

I really envy you the doctors you have. I had a recent visit with my

internist that put me into tears. I asked about Dysautonomia and having

a tilt table test. She was totally emphatic that I can not have this as

it is congenital (which it is not always). In any case, I told her I

was frustrated to not be able to find an explanation for my inability to

stand and walk without becoming ill. She just said I may not get an

explanation and that I have been extensively tested and more or less

just live with it. I also told her about symptoms I experienced while

being tested for asthma (which I have just been diagnosed with after 8

months of symptoms). She just said that's what happens when you go to

lots of specialists and have to have nasty tests. I was really shocked

at her rudeness and sarcasm. She is not normally like that though I

don't believe she understands CFS much. In any case, I've had it with

her and am looking for a new doc.

Sandrea

[Guest guest]

Hi Vicki,

Oh I did not mean your doctor was dragging feet. I just know many

out there that " sell " the units can bill you for whatever your

insurance doesn't pay. That is not necessary.

I know what you mean about " acceptance " of the need for one. As all

else with this illness, it's a process of continual acceptance and

making the best of what we have left. You may not think you need one

yet but I have to tell you that many times I don't need either but

it's the difference of conserving energy to get through a day. Some

days my legs just don't work right and then I use it for that too

obviously. I walk as much as I can safely. I was able to walk lin

walmart today as long as I had the cart in front of me and did well

but tomorrow may be a whole nother story!

Good luck in your journey with deciding when it's good for you. We

are always here to bounce things off of.

God Bless,

[Guest guest]

Hey Lee, welcome back, you know you can always spill it here! We

always have ideas and advice LOL. I’ve been sick since ’86 and I still wanna

bust outta this shell and go DO STUFF!!! It never goes away, really. Anyway

you take care, look forward to hearing from you. Aylwin xox

[Guest guest]

Darlene,

Thanks for the support. I understand about the lack of closure. My

mother chose to be cremated and not have a service as she didn't want to

pay for some Rabbi she didn't know to do a service. Anyway, I can

understand her thinking, except I have learned that the service is for

the living and not the dead and that it would have done a great deal for

me to have the closure. I did insist on a little something so my

brother and I and my grandmother and my uncle went into the back yard

and I read a poem and said mourners Kaddish for her. I think none of

them wanted to be there, except my grandma maybe, but it was the most I

could get. I sad Kaddish for her for a year as I knew no one else

would. When my grandma died she was buried in NY (we lived in FL but my

grandparents plot was in NY where her father and husband were buried).

She too wanted no service and no one going up to NY. She had a good

number of friends that asked me about a service and I said she had

chosen not to have one. I tried to explain to her that it was important

for those of us left but she didn't want to waste the money and wanted

us to have the money instead. With her I was with her right up until

the end and through a 3 day coma till she gave herself permission to

move on. So that felt like some closure to me with her.

I think it is horrid that your mother's docs didn't listen and perhaps

could have caught the cancer well before anything serious was going on.

My mother had migraines and leg pains etc for 10 years and went to docs

who said it was all in her head. Finally one day a disc in her spine

ruptured and she went for emergency surgery by ambulance in horrid pain.

The doc that did the surgery said she had text book symptoms of a

slipped disc. So she had to have a laminectomy and fusion and was in

the hospital 3 months I believe. I was only six but I remember sitting

on the stairs watching the ambulance guys taking her out on a stretcher

and my grandmother sitting on the couch crying. She never really

recovered from that.

Sandrea

[Guest guest]

Welcome Lee!

Take care of you. Big gentle huggles.

Love ya,

Di

[Guest guest]

Tabitha

Welcome to the club no one wants to join.

No one can really tell you what to expect. My daughter is 13 years old and

mildly affected. However, her seizures are horrible

Every child is so very different. This is terrifying, and there is often more

questions than answers.

She is your daughter, and all you can do is love and fight for her. Never expect

less than miracles, because these kids often surprise you.

Sent from my iPhone

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

,

Thank you. I know that I have more questions than possible answers, I just dont

know who to talk to or what to do. Im so scared, especially because its so

early. I cant stop crying most days since I found out. I pray constantly and

just try to hold her and love her as much as humanly possible. Everyone keeps

saying she is fine and going to be okay and that nothings wrong with her but I

just cant seem to find it in myself to believe that.

Tabitha

A very terrified new mom

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Fri, June 25, 2010 10:04:21 AM

Subject: Re: New member

 

Tabitha

Welcome to the club no one wants to join.

No one can really tell you what to expect. My daughter is 13 years old and

mildly affected. However, her seizures are horrible

Every child is so very different. This is terrifying, and there is often more

questions than answers.

She is your daughter, and all you can do is love and fight for her. Never expect

less than miracles, because these kids often surprise you.

Sent from my iPhone

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

Thank you . Every bit of support helps. Especially because I dont know a

single person with a child with some form of disability.

________________________________

To: polymicrogyria

Sent: Fri, June 25, 2010 10:12:56 AM

Subject: Re: New member

 

Tabitha,

Welcome! We ALL have been or are going through what you are right now.

is absolutely right though. Every child is different but I'm sure you will find

someone in this group with a child similar to yours. My son is 3 and I was told

he would never walk or talk. At 18 months old, he proved everyone wrong!! He was

up walking around. Although he doesn't talk (more like jibberish). But he DOES

use basic sign and can form 3 word sentences. I know it is VERY scary and

stressful when you first find out that their is something wrong with your child.

Especially an extremely rare diagnosis of PMG. I don't think anyone fully

understands PMG. I'm still learning. Have a wonderful day.

-allison

Sent on the Sprint® Now Network from my BlackBerry®

Re: New member

Tabitha

Welcome to the club no one wants to join.

No one can really tell you what to expect. My daughter is 13 years old and

mildly affected. However, her seizures are horrible

Every child is so very different. This is terrifying, and there is often more

questions than answers.

She is your daughter, and all you can do is love and fight for her. Never expect

less than miracles, because these kids often surprise you.

Sent from my iPhone

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

Tabitha. I have so much I want to say but I have a patient not doing well today

so I may add more later. My heart goes out to you! The most

important thing I want to reach out to you is not to fall into the trap I did!

The nothing is wrong with your child trap. I know people say it to try to make

you feel better! However the sad thing is that my friends and family was wrong

even when there was evidence that there was something wrong(MRI). Anyway I

closed the door to all my fears and feelings about the struggles my has

in his life. Then when I opened that door they flew at me full force. I guesse

what I'm trying to say is know that you will have challenges but find peace with

yourself in that. Its so worth the love you get in return! And she will be ok no

matter what the two of you go through becouse she has a mother who loves her so

dearly! Janell mother of with pmg and schitzencephaly

Sent from my Verizon Wireless BlackBerry

Re: New member

Tabitha

Welcome to the club no one wants to join.

No one can really tell you what to expect. My daughter is 13 years old and

mildly affected. However, her seizures are horrible

Every child is so very different. This is terrifying, and there is often more

questions than answers.

She is your daughter, and all you can do is love and fight for her. Never expect

less than miracles, because these kids often surprise you.

Sent from my iPhone

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

Tabitha,

There IS something wrong - but families have a hard time accepting that.  We

all have our horror stories of things family members have said / done.  My

mother in law used to try to spank my daughter for NOT WALKING RIGHT because she

is partially paralyzed on one side of her body.

I think we all get the worst case from the doctors.  My daughter was supposed

to never walk, talk, etc and be profoundly mentally retarded.  None of that has

come true. 

The crying is NORMAL do not be ashamed.  So is the depression.  For all of

this the diagnosis is a grieving process.  You have to " bury " the child that

you thought you had, and come to terms with the child that you do have.  Your

dreams will shift - nothing is a given.  BUT - there is a good part of that. 

You learn to value every milestone, and glory in the little things that typical

parents just accept.  The first step is that much more amazing and sends you

over the moon.  The first word (or semblence of a word) will take you over the

moon.  Your miracles will be different, and they will be smaller, but they will

happen. 

In some ways these children are more beautiful to us (mothers and / or fathers)

than any typical child can be.

It is a long road, and it is scary, but it is worth it.  Don't worry about the

people that say there is nothing wrong - they are trying to protect themselves.

Hold your baby, and love her.  Ask questions.  And, ALWAYS ALWAYS trust your

" mommy gut " .  You know your child better than any doctor ever can.  Don't ever

take no for an answer.

And, when you hold your baby, and you are crying for what could have been -

don't worry, your tears sometimes strengthen her in ways you can't imagine. 

You can do this.

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

Tabitha,

just told everything we feel in our heart.

Just trust yr mommy gut and love yr daugther the most you can.

You'll be surprised by the infinite joys she will give you and the

victories she'll be able to reach!

I believe these sweet babies are a God's gift, for our hearts....

they just teach us how to love! And they are infinitively beautiful

and lovely in their weakness... never give up of her, keep yr face

in God and in her and you'll find a way of passing through this

" tempest " . It's not easy, at all, but you'll do it!

We have been assisting my granddaugther with alternative treatments

and we have got good results, as far.

We all are energy and bringing her a good energy is not a bad idea,

I believe. We have treated her in Minneapolis, with Chi-Kun and she

began walking in the room, during the treatment. We were told she

never would... then we returned to Brazil and we looked after other

alternatives ways. She went for Cabala sessions during more than an

year, as well as Light Frequencies (it is a woman from USA, who comes

here in Brazil).

I'm talking about because I believe every good experience must be shared

and parents will decide if they believe and want it or not. There's a lot of

alternative ways and I believe we have used almost all of them, homeopaty,

orthmolecular, floral, Bodytalk, etc, etc.

With this, Flora is out of meds, no seizures, thanks to God, eats very,

very well but she has temper moods, she cries a lot and she ates drinking

water (living in Brazil is a very bad thing, because of the hot climate).

She's non verbal, as yet, but we firmely believe she will talk, in a near

future. She understands everything and she tries a lot to talk....

SHE WILL, I'm sure!

So, be brave, love her and believe her!

Family support is very important in this moment, for both of you.

A kiss, with friendship.

m. paula, grandmom of Flora, 4, 5 yr, ligth right PMG,

abraços,

m. paula

" Não há futuro para a revolução política. Só um tipo de revolução é possível, e

essa é a revolução espiritual.

Cada indivíduo tem de mudar em seu ser, e se podemos mudar milhões de pessoas,

então a sociedade vai mudar.

Não há nenhuma outra maneira, não há nenhum atalho. " Osho

To: polymicrogyria

From: divewithmelissa@...

Date: Fri, 25 Jun 2010 08:54:45 -0700

Subject: Re: New member

Tabitha,

There IS something wrong - but families have a hard time accepting that. We all

have our horror stories of things family members have said / done. My mother in

law used to try to spank my daughter for NOT WALKING RIGHT because she is

partially paralyzed on one side of her body.

I think we all get the worst case from the doctors. My daughter was supposed to

never walk, talk, etc and be profoundly mentally retarded. None of that has

come true.

The crying is NORMAL do not be ashamed. So is the depression. For all of this

the diagnosis is a grieving process. You have to " bury " the child that you

thought you had, and come to terms with the child that you do have. Your dreams

will shift - nothing is a given. BUT - there is a good part of that. You learn

to value every milestone, and glory in the little things that typical parents

just accept. The first step is that much more amazing and sends you over the

moon. The first word (or semblence of a word) will take you over the moon.

Your miracles will be different, and they will be smaller, but they will happen.

In some ways these children are more beautiful to us (mothers and / or fathers)

than any typical child can be.

It is a long road, and it is scary, but it is worth it. Don't worry about the

people that say there is nothing wrong - they are trying to protect themselves.

Hold your baby, and love her. Ask questions. And, ALWAYS ALWAYS trust your

" mommy gut " . You know your child better than any doctor ever can. Don't ever

take no for an answer.

And, when you hold your baby, and you are crying for what could have been -

don't worry, your tears sometimes strengthen her in ways you can't imagine. You

can do this.

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

, Welcome to the group! My son is five and will be six in December.

He is non verbal but does do sign. He also is struggling with potty training, he

is starting to use the potty more often but still not very consistant. As to

date we have not experienced any seizures, by the grace of god! starts

kindergarten next Monday and boy am I nervouse! He's going to a charter school

that I found and I've been highly impressed on their willingness to have

meetings to get to know what needs. Up intell this year he hasn't even

been on the growth charts, he's now up to 20% for weight and height.

Janell

Sent from my Verizon Wireless BlackBerry

[Guest guest]

,

It completely amazes me that some of the special education teachers act the way

they do! I just pray that s teacher practices what she preaches.

also was in a Early Intervention preschool since he was two and a half. I had

the choice of putting him in full day kindergarten this year but he also goes to

a place called the Learning Center for a couple hours a day and danget I just

think he should have a little time each day to just be a kid! 

Vent away! We all have to do it from time to time and that's what were here for!

I'm really sorry to hear about your husband. That has got to be tough!

Janell

Subject: Re: New Member

To: polymicrogyria

Date: Tuesday, September 14, 2010, 2:30 AM

 

Thank you for your reply, Janell! Eli is barely on the growth charts also. At

his last check up he scored beneath the 5th percentile for height and weight. He

is adopted from Korea, so at first we thought that he was just small because the

Asian people are generally smaller than Caucasians, but his growth has slowed

down even more over the last couple years and he now weighs only 40 lbs at age

6. I can understand completely about being nervous about sending your son to

kindergarten! Eli went to an ECSE (early childhood special ed) class last year

and that went pretty well,(it was only a half day class) but this year he is in

a full day elementary special ed class, and even though I had met with the staff

from his old and his new school back in June and we had discussed all of his

issues, it seems like now that he has been in school for a week, his teacher is

totally surprised and unprepared to deal with him! I am expecting a call back

tomorrow from the

director of the program and we may end up pulling him out and placing him

somewhere else that can better meet his needs. Eli has been having meltdowns at

school a couple times each day and they have to send him to the office to calm

him down! I'm sure this is because he is just not developmentally ready for this

type of classroom. His teacher said it is like having a 2 year old running

around a kindergarten classroom. Well...it's not like they did not know what his

level of functioning was beforehand! Not to mention the fact that he is still

grieving the loss of his Daddy! (My husband passed away very unexpectedly, about

this time last year) I'm sorry...I guess I just needed to vent a little bit! I

hope your son's experience at his new school will be a good one! Thanks again

for responding!

>

> , Welcome to the group! My son is five and will be six in

December. He is non verbal but does do sign. He also is struggling with potty

training, he is starting to use the potty more often but still not very

consistant. As to date we have not experienced any seizures, by the grace of

god! starts kindergarten next Monday and boy am I nervouse! He's going

to a charter school that I found and I've been highly impressed on their

willingness to have meetings to get to know what needs. Up intell this

year he hasn't even been on the growth charts, he's now up to 20% for weight and

height. Janell

> Sent from my Verizon Wireless BlackBerry

>