newby

May 2, 2007

Good Morning;

I am sorry to hear that your HS is giving you such fits. Confrontation is very difficult and I was always lousy at it...but having and having to be his advocate has made me "stretch".

Anyway....the fact that he has an IEP means that he must be given any and all "materials" to help him succeed.

By the very definition of his dx and having an IEP in place, the American's with Disabilities Act allows him to:

* have extended testing times

* take notes via a recorder

* preferential seating

* type assignments

* be provided with teacher created note outlines

* have test questions or assignment questions read aloud to him.

......and so on. They are, quite literally, bullying you and hoping you'll back down. They will hope to use the term "provide for him in what is reasonable"....and reasonable is very vague.

Do not let them bully you. You must call the Special Services coordinator and request an IEP team meeting. When they tell you it is not up for review, you can tell them that it is your right as his parent to request that the IEP be modified at any time when you observe that his educational needs have changes or are not being met. If the program (the IEP itself) is not appropriate for his needs....then it must be modified.

The coordinator has a maximum of 30 days to arrange the meeting and all involved must be present.

By this age they must also have a "transition services" objective in place as well. If it is not....you'll need to get that looked at as well.

My son is 18 years old and will graduate on May 20th , on time, with his class. We have had an IEP in place since he was 3 years old. It is a long haul. It will get easier over time but it takes an incredible amount of consistent involvement with the educators....including the Superintendent of Schools and your state's Board Of Secondary Education.....to get what your son needs.

One of the best books I have ever purchased is:

HELPING ADOLESCENTS WITH ADHD & LEARNING DISABILITIES

Ready to Use Tips, Techniques and Checklists for School Success

JUDITH GREENBAUM, PH.D

GERALDINE MAEKEL, PH.D

If you, or anyone on the board, for that matter need to talk or would like to visit about what has worked for our family and , please feel free to email me or log on to my profile page and request my phone number. I am more than happy to discuss strategies.

I must stress though...first and foremost, you need to call the Special Ed office, today, and request a review.

All the best,

Mrs. Crawford

Mother of Aspie/ADHD son Matt...age 18

Cassville, Missouri

March 24, 2008

Hi there,

Just found this group recently and thought I'd introduce myself and

WOW do I have questions : -).

I am 39 years old, have a husband of 19 years and 2 children, 18 and

14. Was diagnosed with achalasia around Nov. 2006. Had symptoms

of extreme pain that I thought was acid reflux for 6-9 mths prior to

diagnoses. In Jan. 2007 started taking 30 mg Procardia daily.

I am still able to eat anything I want as long as I have PLENTY of

water to wash it down with. I have not experienced the " white foam "

yet and my weight hasn't changed. I have over the past month or so

eliminated the carbonated soft drinks – at first being a New's Years

goal with my daughter now it's because it seems to make eating harder

when I have a soft drink with my meal. I did have a Diet Coke this

past weekend as long as it isn't with my meals. My nights are

interrupted often; however, if I have a glass of water near my bed I

am able to get the spasms/chest pain quieted down and go back to

sleep. Of course, sleeping positions are limited to my stomach or

back. Lying on my sides seems to bring on the spasms.

My question is, after reading many of the post here, when should I

consider surgery? If I wait until things are progressively worse, am

I putting more irreparable damage on my esophagus by doing this? I

am fine with the extra water consumption if this will allow me to put

off the surgery for a while. Just had a hysterectomy a year ago, so

not ready to have another major surgery just yet.

I know this has been answered for those who have already had the

surgery but for someone that hasn't, should I get yearly or bi-yearly

tests done on my esophagus until I do need surgery? I do go

regularly to a family physician but do I need to be seeing a GI

also? Of course, my biggest fear is cancer - having lost my mother

to cancer when I was 12, I don't want to miss anything as my children

grow up.

I am in North East Oklahoma area if anyone else is close by. Since

surgery will undoubtedly be in the future at some point – are there

any good Dr. around here?

I'm glad I found this site. I'm sure it will be a valuable resource

to me in the years to come and look forward to being part of this

group.

Thanks for all responses and sorry if this is too long.

Tara

March 24, 2008

HI TARA-Welcome to the group!

Achalasia is a disease that progresses.It doesnt get better. I would

highly reccomend seeking treatment and testing now.Causing further

damage to your Esophagus will lead to worse problems and possible

esophectomy later down the road.

As far as DRs,My sons DR was Dr Rice at the Cleveland Clinic

in Ohio.He is a achalasia specialist WITH OVER 300 MYOTOMIES UNDER

HIS BELT.There are only a few specialist out here for this disease

so please research research research!!Im not sure which specialist

will be closest to you but Im sure someone here will know and post

that.It may mean travel but its worth having one of the best who is

knowledgable.Do what you need to for the best care for this disease.

Once again, I would seek care now by starting with a specialsit

closest to you , then follow up with current testing.

MANOMETRY,SCOPE,BARRIUM ETC..

I hope we can be of help to you.Someone will post soon Im sure of a

DR nearest you to help get you pointed in the right direction.

Tonia

>

> Hi there,

> Just found this group recently and thought I'd introduce myself

and

> WOW do I have questions : -).

>

> I am 39 years old, have a husband of 19 years and 2 children, 18

and

> 14. Was diagnosed with achalasia around Nov. 2006. Had

symptoms

> of extreme pain that I thought was acid reflux for 6-9 mths prior

to

> diagnoses. In Jan. 2007 started taking 30 mg Procardia daily.

>

> I am still able to eat anything I want as long as I have PLENTY of

> water to wash it down with. I have not experienced the " white

foam "

> yet and my weight hasn't changed. I have over the past month or

so

> eliminated the carbonated soft drinks – at first being a New's

Years

> goal with my daughter now it's because it seems to make eating

harder

> when I have a soft drink with my meal. I did have a Diet Coke

this

> past weekend as long as it isn't with my meals. My nights are

> interrupted often; however, if I have a glass of water near my bed

I

> am able to get the spasms/chest pain quieted down and go back to

> sleep. Of course, sleeping positions are limited to my stomach or

> back. Lying on my sides seems to bring on the spasms.

>

> My question is, after reading many of the post here, when should

I

> consider surgery? If I wait until things are progressively worse,

am

> I putting more irreparable damage on my esophagus by doing this?

I

> am fine with the extra water consumption if this will allow me to

put

> off the surgery for a while. Just had a hysterectomy a year ago,

so

> not ready to have another major surgery just yet.

>

> I know this has been answered for those who have already had the

> surgery but for someone that hasn't, should I get yearly or bi-

yearly

> tests done on my esophagus until I do need surgery? I do go

> regularly to a family physician but do I need to be seeing a GI

> also? Of course, my biggest fear is cancer - having lost my

mother

> to cancer when I was 12, I don't want to miss anything as my

children

> grow up.

>

> I am in North East Oklahoma area if anyone else is close by.

Since

> surgery will undoubtedly be in the future at some point – are

there

> any good Dr. around here?

>

> I'm glad I found this site. I'm sure it will be a valuable

resource

> to me in the years to come and look forward to being part of this

> group.

>

> Thanks for all responses and sorry if this is too long.

> Tara

>

March 24, 2008

There comes a point when you are DONE with it and ready for surgery. I would suggest some planning when it is convenient for you as it can sometimes take a month or more to work into the schedule. If you wait too long after your last barium and other tests then they may have you redo them. The DONE WITH IT feeling just gets stronger.

About the cancer... not once in this group do I remember hearing anyone diagnosed with esophageal cancer that has achalasia. I do know one person and the father of a friend with esophageal cancer. Both are/were heavy smokers, but did not have achalasia. I'd worry much more about other cancers, perhaps colon, skin, or breast cancer and take appropriate tests for those before I'd worry about esophageal cancer, even as an achalasian. Even though the risk may be increased, the incidence is so rare it is still not likely any of us will get it.

It is like the early days of foreclosure rumors, there were so few of them that right away news outlets started saying the foreclosures were up some ridiculous amount, fueling the fear of foreclosures... the early days it may have been only 1 out of 1000 homes, so if it doubled, it was 2 out of 1000 homes. Early fear fueled some of the problems and the downturn in the markets... then fear turned into reality. (For good reason now, but the early stats were very misleading.) Esophageal cancer is very rare, most doctors are not that worried about it for us, IMHO.

Sandy>> Hi there,> Just found this group recently and thought I'd introduce myself and > WOW do I have questions : -).> > I am 39 years old, have a husband of 19 years and 2 children, 18 and > 14. Was diagnosed with achalasia around Nov. 2006. Had symptoms > of extreme pain that I thought was acid reflux for 6-9 mths prior to > diagnoses. In Jan. 2007 started taking 30 mg Procardia daily. > > I am still able to eat anything I want as long as I have PLENTY of > water to wash it down with. I have not experienced the "white foam" > yet and my weight hasn't changed. I have over the past month or so > eliminated the carbonated soft drinks – at first being a New's Years > goal with my daughter now it's because it seems to make eating harder > when I have a soft drink with my meal. I did have a Diet Coke this > past weekend as long as it isn't with my meals. My nights are > interrupted often; however, if I have a glass of water near my bed I > am able to get the spasms/chest pain quieted down and go back to > sleep. Of course, sleeping positions are limited to my stomach or > back. Lying on my sides seems to bring on the spasms.> > My question is, after reading many of the post here, when should I > consider surgery? If I wait until things are progressively worse, am > I putting more irreparable damage on my esophagus by doing this? I > am fine with the extra water consumption if this will allow me to put > off the surgery for a while. Just had a hysterectomy a year ago, so > not ready to have another major surgery just yet. > > I know this has been answered for those who have already had the > surgery but for someone that hasn't, should I get yearly or bi-yearly > tests done on my esophagus until I do need surgery? I do go > regularly to a family physician but do I need to be seeing a GI > also? Of course, my biggest fear is cancer - having lost my mother > to cancer when I was 12, I don't want to miss anything as my children > grow up.> > I am in North East Oklahoma area if anyone else is close by. Since > surgery will undoubtedly be in the future at some point – are there > any good Dr. around here? > > I'm glad I found this site. I'm sure it will be a valuable resource > to me in the years to come and look forward to being part of this > group. > > Thanks for all responses and sorry if this is too long.> Tara>

July 23, 2008

Hello Elaine ~

Welcome to the group ! I am sorry

to hear you are having problems with your

implants and health. No need to have testing

done, that only scares you. Having your implants

removed properly, ( enbloc with drain tubes so you dont have too much swelling ) enbloc is where they cut around the scar tissue, leaving the implant inside of it

and removing it all at once. This will insure any toxins will be contained in the scar capsule.

With proper explant and detoxing and a good clean

diet , you can regain your health back. The time it takes depends on your immune system. It varies with everyone. Just know it CAN be done !

Please read in the archives, and ask all the questions you can think of ! We will be here to help you and support you best we can !

Hugs N Prayers ~

Dede**************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

July 23, 2008

Elainem

Where are you?

By all means, get them out asap, but be sure to use one of the docs

on our list that do it properly.

Lynda

At 11:52 AM 7/23/2008, you wrote:

>Hello, I'm am new at all this, just started learning about problems

>w/breast implants. I had mine done in November 2005.

>I just recently started having problems as I speak I am waiting for

>my test results from my doctor, she thinks I may have Sjogrens

>syndrome. I am scared to death........ I want my implants out now

>!!!! They are saline implants, not sure where to start, do I called

>a Dr who does alot of explants surgery ? Do I do other test ???? I

>just want to get something done as soon as possible.

>

>Please any advice I would really appreciate very much !!

>

>Thank You,

>Elaine

>

July 23, 2008

Hi Elaine,

I'm sorry to hear that you are having troubles with your health. I

can totally understand your desire to be rid of the implants. I

couldn't get mine out fast enough...had to wait a month for the

surgery. I used a recommended surgeon and that is the ONLY way to

go, as we have found out over and over and over on this group. If

you do not use a surgeon who understands the vital need for a proper

explant (either en bloc removal, or total capsulectomy with

drains...your surgeon should be familiar with these terms), then you

risk not getting better even though the implants are out. The scar

capsule can contain silicone debris and other factors that can keep

your immune system activated.

So, a proper explant, using en bloc removal is the only way to go.

We have a list of recommended doctors you should check out, but we

highly recommend these doctors based on their consistently excellent

outcomes and total capsule removal:

Dr. Lu Feng in Cleveland OH

Dr. Kolb in Atlanta, GA

Dr. Huang in Denver, CO

and

Dr. Ed Melmed in Dallas TX (make sure you discuss total capsule

removal with him.)

These doctors can be found on the internet or on our list...call them

and schedule an explant as soon as you can. Keep us posted. WE can

help you through this journey. It will take some time to get better

(it took me 4 years) but it was worth it.

Patty

--- In , Elaine Hauber <ehauber33@...>

wrote:

>

> Hello, I'm am new at all this, just started learning about problems

w/breast implants. I had mine done in November 2005.

> I just recently started having problems as I speak I am waiting for

my test results from my doctor, she thinks I may have Sjogrens

syndrome. I am scared to death........ I want my implants out

now !!!! They are saline implants, not sure where to start, do I

called a Dr who does alot of explants surgery ? Do I do other

test ???? I just want to get something done as soon as possible.

>

> Please any advice I would really appreciate very much !!

>

> Thank You,

> Elaine

>

July 27, 2008

Hi Elaine,

I had my implants done in May of 2005, and had them removed in

November of 2005. I live in New Jersey but chose to go to Ohio to

have mine removed by Dr. Lu-Feng. She really did a fantastic

job, not only do I look very close to how I looked pre-implant, but

I knew she believed in implant illness and would remove the implants

properly.

Sis

> >

> > Hello, I'm am new at all this, just started learning about

problems

> w/breast implants. I had mine done in November 2005.

> > I just recently started having problems as I speak I am waiting

for

> my test results from my doctor, she thinks I may have Sjogrens

> syndrome. I am scared to death........ I want my implants out

> now !!!! They are saline implants, not sure where to start, do I

> called a Dr who does alot of explants surgery ? Do I do other

> test ???? I just want to get something done as soon as possible.

> >

> > Please any advice I would really appreciate very much !!

> >

> > Thank You,

> > Elaine

> >

>

July 28, 2008

Dear Sweet Sis:

How are you doing, and is your sister getting better? I hope that you never have another symptom from these rotten devices. It breaks my heart to see how many new women are becoming sick. There will be many more, because it seems like more women are having breast implants.

Honey, thank you for giving support to the new ladies. I feel guilty that I am not helping more, but I seem to be so broken lately.

Sending love and hope to you, and all of the new ladies.....Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~```

Re: Newby

Hi Elaine,I had my implants done in May of 2005, and had them removed in November of 2005. I live in New Jersey but chose to go to Ohio to have mine removed by Dr. Lu-Feng. She really did a fantastic job, not only do I look very close to how I looked pre-implant, but I knew she believed in implant illness and would remove the implants properly. Sis> >> > Hello, I'm am new at all this, just started learning about problems > w/breast implants. I had mine done in November 2005.> > I just recently started having problems as I speak I am waiting for > my test results from my doctor, she thinks I may have Sjogrens > syndrome. I am scared to death........ I want my implants out > now !!!! They are saline implants, not sure where to start, do I > called a Dr who does alot of explants surgery ? Do I do other > test ???? I just want to get something done as soon as possible.> > > > Please any advice I would really appreciate very much !!> > > > Thank You,> > Elaine> >>

January 14, 2009

Quick reply here as I have to go to work. There have been time when

my husband has had to have a shot to numb the ear prior to cleaning.

The drawback is that the shot tends to get into your balance canals

and causes severe vertigo until it wears off.

I am concerned about all the white stuff they are getting out of your

ear. That might be the c-toma itself. Has your doctor even brought

up cholesteatoma? It's worth checking into.

Good luck.

Michele, Group moderator

>

> I am a 50 yr old woman. I have a connective tissue disorder which

> causes aneurysms and joint issues. I had a rough yr last year with ear

> infections. The local ent could never quite decide if it was swimmers

> or middle ear or if it kept changing. The copay every week and the

> different meds were killing me. A local emergency room Dr suggested a

> different ENT out of town. The new ENT picked up on a lesion in the

> back of my ear. He totally removed it through a biopsy. NO MORE

> INFECTIONS! Until now............ I had pneumonia at Christmas. I took

> all the antibiotics and did improve. But this week, I was noticing

> dizziness and sinus pressure. I went back to internist yesterday and

> she gasped at a tumor growing in my ear. I did an internet search

> under " ear and connective tissue disorders " and found cholesteatoma. I

> have an appt with the last ENT today. All the cleanings from the past

> have been horribly painful. They always have to remove a ton of white

> stuff from out of my ear. I dread the pain to the point of shaking. How

> does your Drs control the issue of pain during cleaning and what should

> I expect this afternoon?

>

January 14, 2009

He has not. I will see him today because of the tumor. But what I read online sounds like one to me. The first ENT that I saw called the white stuff pus. Re: Newby

Quick reply here as I have to go to work. There have been time whenmy husband has had to have a shot to numb the ear prior to cleaning. The drawback is that the shot tends to get into your balance canalsand causes severe vertigo until it wears off.I am concerned about all the white stuff they are getting out of yourear. That might be the c-toma itself. Has your doctor even broughtup cholesteatoma? It's worth checking into.Good luck.Michele, Group moderator>> I am a 50 yr old woman. I have a connective tissue disorder which > causes aneurysms and joint issues. I had a rough yr last year with ear > infections. The local ent could never quite decide if it was swimmers > or middle ear or if it kept changing. The copay every week and the > different meds were killing me. A local emergency room Dr suggested a > different ENT out of town. The new ENT picked up on a lesion in the > back of my ear. He totally removed it through a biopsy. NO MORE > INFECTIONS! Until now............ I had pneumonia at Christmas. I took > all the antibiotics and did improve. But this week, I was noticing > dizziness and sinus pressure. I went back to internist yesterday and > she gasped at a tumor growing in my ear. I did an internet search > under "ear and connective tissue disorders" and found cholesteatoma. I > have an appt with the last ENT today. All the cleanings from the past > have been horribly painful. They always have to remove a ton of white > stuff from out of my ear. I dread the pain to the point of shaking. How > does your Drs control the issue of pain during cleaning and what should > I expect this afternoon?>

January 14, 2009

Get someone with strong hands to go with you so you can squeeze them.

It will probably hurt a lot.

I don't remember too much about my situation as I was 4 years old and I

am 48 now (1965 it was). I just remember that my ear hurt and

the doctor had to pull a lot of icky stuff from my ear. After the

surgery, I still had some problems (I still do 44 years later), but,

it's better than nothing and it doesn't stop me from going on Space

Mountain.

Walter in Savannah

Remember: If you light a man a fire, you warm him for the night.

If you light a man ON fire, you warm him for the rest of his life.

Melva wrote: