New to the group....

April 6, 2000

Oh sorry Meg, I forgot you were a veggie when I answered your message

earlier. Leaner.

April 6, 2000

Meg,

I'm a pseudo-vegetarian (no land animals), so I'm always looking for

good sources of protein. I've found the following to work: cottage

cheese, tofu, tempeh, all the " fake " meats (Morningstar Farms is the

best brand, in my opinion), egg whites (although you're allergic to

them), protein powder (which you can add to oatmeal)...and then

there's always sushi. ; )

Hope this helps.

Jami

April 7, 2000

Hi Meg,

Welcome aboard. You won't find a better group of people to motivate you

than right here.

As for protein sources, do you like lean beef or any kind of fish? Have

you tried the Myoplex Lite shakes or any of the protein drink mixes. Most

are rich and creamy and very tasty. There are lots of ways to doctor up your

meats and fishes to make them very delicious. Let us know what kinds of meat

and fish you like and we'll go from there.

~Laury

April 7, 2000

..

> Oh sorry Meg, I forgot you were a veggie when I answered your message <

Does this mean then, that I'm a Chicken?

Sorry , had to do it...

Jen

April 7, 2000

No but it could mean I'm a bit of a turkey!! Leaner.

September 20, 2002

Hi Lynn:

Tell us a litte more about ! That will help us get to know him. The

range of " where to start " varies greatly.

Andy, my son, is also 13. He is in 7th grade and attends a general block

class as a part of his placement as well as Mairimba class. He is

nonverbal, basically. He has a reliable " yah " and says a fwe other noises,

but uses gesture and picture systems mostly to communicate.

Andy's got a lot of personality so those " gestures " are quite colorful.

There' mostly in his facial expression. there's rarely any doubt about what

is on And's mind--including " who's that cute girl over there? "

Tell us a little more.

Take care,

Joan

At 02:30 AM 9/20/2002 EDT, you wrote:

>Hello to everyone. I joined the group a few days ago, and already feel as

>though I am in a foreign country. Things like floortime, Greenspan, and

>stimming are Greek to me. I am a Mom of many including 13 year old

>who has DS, and has just been diagnosed with autism. Actually I have

thought

>he had it for years, but we live in a rural community, and most of his

>teachers have had little experience with Downs, let alone this. There is

>relief with knowledge, meaning " Oh, that explains it! " At the same time, I

>have ZERO knowledge as to what to do now. My community is no help, because

>there is no experience here. 's older age also means that a great

deal

>of valuable time is gone. Any ideas of where to begin would be greatly

>appreciated.

> Our family is a busy one. is number 7 of 12 children. We still

>have 8 at home. I am a stay at home (yah - right!) Mom. We are hoping to

>move from here in Northern California to Provo, Utah, next summer. I would

>like to have some ideas of what to look for in schools before we look for a

>place to live. Thank you for any ideas you can share.

> ~Lynn

>

September 20, 2002

where in Northern Calif??

My brother lives in Roy, Utah

Kathy

New to the group....

Hello to everyone. I joined the group a few days ago, and already feel as

though I am in a foreign country. Things like floortime, Greenspan, and

stimming are Greek to me. I am a Mom of many including 13 year old

who has DS, and has just been diagnosed with autism. Actually I have thought

he had it for years, but we live in a rural community, and most of his

teachers have had little experience with Downs, let alone this. There is

relief with knowledge, meaning " Oh, that explains it! " At the same time, I

have ZERO knowledge as to what to do now. My community is no help, because

there is no experience here. 's older age also means that a great deal

of valuable time is gone. Any ideas of where to begin would be greatly

appreciated.

Our family is a busy one. is number 7 of 12 children. We still

have 8 at home. I am a stay at home (yah - right!) Mom. We are hoping to

move from here in Northern California to Provo, Utah, next summer. I would

like to have some ideas of what to look for in schools before we look for a

place to live. Thank you for any ideas you can share.

~Lynn

September 20, 2002

Lynn, welcome! I am very new too to this group AND DS/Autism! I

REALLY understand when you say " Oh, that explains it! " . My is

4 1/2 and we are waiting for a doc appt with a Ped Neuro to possibly

confirm Autism w/DS. I am pretty sure he does have it and it now all

makes sense. I don't know much about autism terms so I will learn

here with ya! Does your son speak at all? Or communicate?

I wish I lived by ya, I don't have anyone to relate or talk to

myself... So HUGS to you and your journey!!!

Adrienne, mom to 4 1/2 DS, possible ASD, Regan 9 1/2 and

Reece ALMOST 2!!

> Hello to everyone. I joined the group a few days ago, and already

feel as

> though I am in a foreign country. Things like floortime,

Greenspan, and

> stimming are Greek to me. I am a Mom of many including 13 year old

> who has DS, and has just been diagnosed with autism. Actually I

have thought

> he had it for years, but we live in a rural community, and most of

his

> teachers have had little experience with Downs, let alone this.

There is

> relief with knowledge, meaning " Oh, that explains it! " At the same

time, I

> have ZERO knowledge as to what to do now. My community is no help,

because

> there is no experience here. 's older age also means that a

great deal

> of valuable time is gone. Any ideas of where to begin would be

greatly

> appreciated.

> Our family is a busy one. is number 7 of 12 children.

We still

> have 8 at home. I am a stay at home (yah - right!) Mom. We are

hoping to

> move from here in Northern California to Provo, Utah, next summer.

I would

> like to have some ideas of what to look for in schools before we

look for a

> place to live. Thank you for any ideas you can share.

> ~Lynn

>

September 21, 2002

In a message dated 9/20/02 2:31:58 AM Eastern Daylight Time, lgeddie@...

writes:

> 's older age also means that a great deal

> of valuable time is gone. Any ideas of where to begin would be greatly

> appreciated.

>

Hey Lyn,

Welcome!!! I really believe that it's never too late!!!! If you

want to do some reading, there's loads of it on this listserv's website.

Maybe you can tell us a little more about and we can all discuss

things that are out there. There's lots of great minds and experience on

this list!!!!

Again, welcome aboard, and we look forward to learning more about your

er...LARGE family (and I thought *I* had a lot of kids.....LOLOL)

Donna (mom to five)

September 21, 2002

Thank you for the warm welcomes, especially to Kathy, who sent so many great

links. I have to remind myself not to stay up half the night reading! I

seldom get the computer before 10, because I have lots of competition! You

asked for more info:

When was a baby, I knew that he was very different. He never

smiled, made eye contact, etc. My husband was in the Army, and we were at a

teaching hospital, so most of the Docs had little experience with down

syndrome children. never interacted or played. When he was 2, he

grabbed a hot-dog of the counter, bit, and choked. I mean really choked,

with firemen and all. It did some brain damage. When he never developed

language, we assumed that this was the cause, though the MRIs did not confirm

that. Always, the schools would say he is low, but teachers would say --

there is something there. From an extremely early age, could run any

VCR, etc. He takes everything apart. And runs bits of videos 100s of times.

He has flapped and spun, and watch cloths since he could move. We moved to

Northern California 5.5 years ago. Here he has had teachers with little

experience with downs. He grew, and discovered fire. We have NO matches

here, and we remodeled to take out the fireplaces. He had burned our camper

to the ground, our new carpet, and our files! At 13, he becomes his videos.

Everything is tied on to be a cape, and he verbalizes his own language. I

have a deaf daughter, so we are fluent signers. With much effort, he can now

sign, and sort of say a few things like eat. Yet this same child can cook,

and unload the dishwasher. Two years ago, he went into the area's most

experienced teacher, and Lynda began to try and unlock his secrets. Recently

I watched a program about autism on National Geographic, and it could have

been written about my son. I have always know, but never realized the

importance of getting the dx. I really have never know what difference it

might make. Here, it would be nothing. But next summer, we are moving to

Utah, and there are more programs available.

With or without adjustments for Down Syndrome, has 17 of the 18

markers for autism. He still seldom has any eye contact, and no

comprehension about peers or siblings. He does like to pick up younger

siblings for about a minute. Even with Ritalin, staying on track is a minute

by minute challenge. Thank goodness, once he is asleep, he sleeps. Ours is

a very busy household, but is always at a TV watching his movies,

where no one will bother him. He does swim like a fish, and after several

years, finally learned the Special Olympic Gymnastics routines, so he can

compete. He couldn't care less. He is also very particular about what

clothes he wears. He would like to wear his church clothes everyday! Now

you know more, so any more ideas would be greatly appreciated. ~Lynn

September 21, 2002

Hi Lynn,

Yes, welcome aboard! I totally agree with everyone here on the list

just awesome e-buddies! This list gives well-meaning advice etc.,

which just encourages us to share our experiences/stories and has

lifted my spirits with energy and determination to help my child. I

know we have our battles to get educated as our child was born with

DS, but when the other dx (autism)come into the picture. I too, had

to do some legwork and then once having the professionals listen and

the autism dx is included. Then what? We're not given a road map or

what else is there to do? There is hope and together we shall all

address the issues needed. I know this, as I've been guided in many

directions with issues that neededed to be addressed and improved

results have shown as I approached the challenges for my 14 y/o son.

Hope you find this list a " Godsend " as I have.

Irma,14,DS/ASD

May 3, 2008

Welcome, . Many of us here have many of your symptoms but everyone is

different.

Do you get copies of every single test you've had? If not, it is important to

do that. We have a brilliant physician on the list

who really straightened things out for me, but he needs lots of data and detail.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of sammi8265

Hi everyone. My name is , and im 22years old. I'm getting

tested now for hyperaldosteronism. I was diagnosed before with

Apparent Mineralocorticoid Excess (AME)back in 2005. I was seeing a

Nephrologist at that time. I had a 24 hour urine done and that is how

he came up with the diagnosis. I was taking Inspra while the test was

done, and I'm not sure if that would affect the results. I had

periodic low potassiums that range from 2.9-4.3 on a really good day.

I was also diagnosed with Familial Periodic Paralysis by a differant

Nephrologist while admitted to the hospital in 2004. My plasma renin

is low, K+ low some times, and aldosterone high. I took spiro 100mg

twice daily and developed a rash on my stomach and my heart would

beat out of my chest like a drum. I felt worse on the spiro that when

i was on nothing. Im now taking nothing, however am feeling not that

good.

I was diagnosed recently with Fibromyalgia by the rheumatologist,

however my primary thinks i have Chronic Fatige Syndrome.

I have a nodule on my thyroid isthmus and had ultrasounds and a

biopsy of it before. Im getting a new ultrasound sometime soon.

How do they tell if you have a nodule/cyst on your adrenal gland?

The new endocrinologist had ordered a lot of tests. I have many many

symptoms. Which include...

* Fatigue

* Headaches

* Leg cramps

* Arm pain

* Joint pain

* Back pain

* low grade fever

* throat pain and a buring sensation in the middle of my neck

(however was told the thyroid nodule presses on my throat and once

was admitted because i couldnt swallow they said it was pressing on

my larynx)

* heart palpatations

* chest pain

* dizziness

* feet sweat for no reason, even if im barefoot

* hands/ face get numb or feel like pins and needles

If anyone experiances these symptoms please let me know.

Thank you all for taking the time to read this.

May 3, 2008

You seem to have full blown classic primary aldosteronism and all of

your problems are likely related to this.

Get my evolution article out of my files, read it and send it to all

your Drs.

Start the DASH NOW!

AME is associated with no or very low PAldo. Was you aldo very low

then. Very rare and I have never recognized a case in 44 years.

You mostly likely have muscle aches and pains from low body K not

FM. Show the article to the Rheum guy to.

Where are you? I may have an expert for you to see who knows what

they are doing.

In the mean time I would suggest that you not only DASH but ask if

you can be started on Inspra.

On May 3, 2008, at 2:55 PM, Valarie wrote:

> Welcome, . Many of us here have many of your symptoms but

> everyone is different.

>

> Do you get copies of every single test you've had? If not, it is

> important to do that. We have a brilliant physician on the list

> who really straightened things out for me, but he needs lots of

> data and detail.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of sammi8265

>

> Hi everyone. My name is , and im 22years old. I'm getting

> tested now for hyperaldosteronism. I was diagnosed before with

> Apparent Mineralocorticoid Excess (AME)back in 2005. I was seeing a

> Nephrologist at that time. I had a 24 hour urine done and that is how

> he came up with the diagnosis. I was taking Inspra while the test was

> done, and I'm not sure if that would affect the results. I had

> periodic low potassiums that range from 2.9-4.3 on a really good day.

> I was also diagnosed with Familial Periodic Paralysis by a differant

> Nephrologist while admitted to the hospital in 2004. My plasma renin

> is low, K+ low some times, and aldosterone high. I took spiro 100mg

> twice daily and developed a rash on my stomach and my heart would

> beat out of my chest like a drum. I felt worse on the spiro that when

> i was on nothing. Im now taking nothing, however am feeling not that

> good.

>

> I was diagnosed recently with Fibromyalgia by the rheumatologist,

> however my primary thinks i have Chronic Fatige Syndrome.

> I have a nodule on my thyroid isthmus and had ultrasounds and a

> biopsy of it before. Im getting a new ultrasound sometime soon.

> How do they tell if you have a nodule/cyst on your adrenal gland?

>

> The new endocrinologist had ordered a lot of tests. I have many many

> symptoms. Which include...

>

> * Fatigue

> * Headaches

> * Leg cramps

> * Arm pain

> * Joint pain

> * Back pain

> * low grade fever

> * throat pain and a buring sensation in the middle of my neck

>

> (however was told the thyroid nodule presses on my throat and once

> was admitted because i couldnt swallow they said it was pressing on

> my larynx)

>

> * heart palpatations

> * chest pain

> * dizziness

> * feet sweat for no reason, even if im barefoot

> * hands/ face get numb or feel like pins and needles

>

> If anyone experiances these symptoms please let me know.

> Thank you all for taking the time to read this.

>

May 4, 2008