Newly diagnosed

January 24, 2005

Thank you Anne,

I am worried sometimes, but other times I am not. My goal is to get Zandrr into a mainstream classroom by the age of 5. I think he can do itAnne <bridgymck@...> wrote:

Yes, I can definately relate. I was in the same spot as you 3-4 years ago. My son doesn't show every sign of Asperger's, and that was kind of disturbing when he was first diagnosed - I kept wondering if it were really an accurate diagnosis, kept thinking to myself that it really couldn't be true, even thought I knew in my heart it was.The more I got to know other kids with HFA/AS the more I realized that the different aspects of Asperger's are almost like a bink of dimmer switches in each kid, and each kid's switches are set on various levels. Very few of the kids I know are exactly alike - and yet they aren't exactly different either. It occurred to me I should be thrilled my ds doesn't have every sign of AS!! We have enough to work on without having to work on every single diagnostic

criteria!! My son is in an all AS class and the fact that every kid isn't working on exactly the same issue is wonderful - they can be models for each other. It sounds like you have good instincts about your son, and that will really help you a lot.Time helps ease the shock of the diagnosis, but so does knowledge and getting to know other families going through similar situations. You will be amazed how quickly kids begin to develop once they are in therapies and you begin working with them at home too. I hope you find yourself looking back in a couple of years and getting to realize how far you and your son have come.Anne, Mom to Jack, 7.3, AS, DSI, ADD > >he shows many of the signs, such as the distant > stare, trouble transitioning, obsessive interests, but also strongly

> shows signs that don't apply, such as pointing out objects of > interest and initiating conversations. I find this all very > confusing, especially the contradictions!

Corinne Zemliak

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http://zemliak.fourpointmoms.com

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January 24, 2005

I wanted to chime in here even though I am new here this week.

My son is in the process of getting his AS diagnosis very late...at 11.

Every thing you have all been saying tonight about your 4 and 5 year olds takes me back to being right where you are. You are all very fortunate that the red flags were noticed by someone because no one told me back then that this all added up to something. I just thought he was a little delayed and a little "quirky" so I did not seek any help for him. I've since had several "professionals" miss the AS because my son was socially outgoing "just really bad at it!" and he showed affection (sometimes to much to the wrong people lol), he also could maintain some eye contact. They never even considered AS because of these facts. He has virtually every other feature of AS and general PDD.

Because this was missed for so long I am dealing with tremendous guilt for overlooking the obvious so many years ago. The opportunities he'd have had for OT and ST could have helped us be so much further by now. maybe my son would be able to ride a bike by now.

So, even though it may be upsetting for you right now, your children will have a much better start because of it.

-Charlotte

Re: newly diagnosed

Yes, I can definately relate. I was in the same spot as you 3-4 years ago. My son doesn't show every sign of Asperger's, and that was kind of disturbing when he was first diagnosed - I kept wondering if it were really an accurate diagnosis, kept thinking to myself that it really couldn't be true, even thought I knew in my heart it was.The more I got to know other kids with HFA/AS the more I realized that the different aspects of Asperger's are almost like a bink of dimmer switches in each kid, and each kid's switches are set on various levels. Very few of the kids I know are exactly alike - and yet they aren't exactly different either. It occurred to me I should be thrilled my ds doesn't have every sign of AS!! We have enough to work on without having to work on every single diagnostic criteria!! My son is in an all AS class and the fact that every kid isn't working on exactly the same issue is wonderful - they can be models for each other. It sounds like you have good instincts about your son, and that will really help you a lot.Time helps ease the shock of the diagnosis, but so does knowledge and getting to know other families going through similar situations. You will be amazed how quickly kids begin to develop once they are in therapies and you begin working with them at home too. I hope you find yourself looking back in a couple of years and getting to realize how far you and your son have come.Anne, Mom to Jack, 7.3, AS, DSI, ADD > >he shows many of the signs, such as the distant > stare, trouble transitioning, obsessive interests, but also strongly > shows signs that don't apply, such as pointing out objects of > interest and initiating conversations. I find this all very > confusing, especially the contradictions!

May 26, 2005

Welcome to the group Michele. Sorry to hear that you have The big "A" but the pluss side is that you have found us here. There is a lot of poeple here that will support you and talk to you about the ins and outs of this disease. Once again welcom to the group.

in Suffolk

May 26, 2005

Hi Michele, welcome to the group. Sorry you have to be a part of this group, but at least you're not in this alone!

There are a few people here in the group who have had surgery at TCC, so I'll let them tell you about Dr. Rice. I met him at a medical conference a little over a year ago, and I liked him a lot -- and you sure can't beat his experience level! I will definitely be going to TCC when the time comes for me to have surgery.

Debbi in Michigan

Hello everyone, My name is Michele I have been diagnosed with achalasia. Around christmas time I began vomiting in my sleep. I went to my primary doctor who sent me for an barium swallow which showed achalasia. I then went to a GI physician who performed endoscopy and manometry which both came back showing achalasia. I then meet with two surgeons in the Saint Louis area, one has done 12 heller-myotomy and the other has done 15 Heller-myotomy. I am not comfortable with so few cases so I am going to the Cleveland Clinic to see Dr. Rice. Does anyone have any feedback in regards to Dr. Rice, traveling after surgery, Physicians that my be located closer to Saint Louis? Any feedback would be appreciated.Thank You,Michele

May 26, 2005

Hi Michele,

Sorry you have A but we welcome you and hope you will get some help soon.

Please feel free to ask questions and someone will be sure to be able to

guide you along.

Good wishes,

Joan

newly diagnosed

> Hello everyone,

> My name is Michele I have been diagnosed with achalasia. Around

> christmas time I began vomiting in my sleep. I went to my primary

> doctor who sent me for an barium swallow which showed achalasia. I

> then went to a GI physician who performed endoscopy and manometry

> which both came back showing achalasia. I then meet with two

> surgeons in the Saint Louis area, one has done 12 heller-myotomy and

> the other has done 15 Heller-myotomy. I am not comfortable with so

> few cases so I am going to the Cleveland Clinic to see Dr. Rice. Does

> anyone have any feedback in regards to Dr. Rice, traveling after

> surgery, Physicians that my be located closer to Saint Louis? Any

> feedback would be appreciated.

> Thank You,

> Michele

>

May 26, 2005

-Michele,

Try the database section in the green box on the left side of the home

page. The first listing is for doctor referals. You should be able

to find something there to start.

July 6, 2005

I understand, it is hard to accept taking meds at all, much less for

life. Recent revelations about how drug companies approve and sell

them does little to increase confidence. Yes, they are controlled for

consistency and ingredients, which most " health food " preparations are

not, but what many doctors don't seem to understand is that it is the

very power of these chemically created substances that worries people.

The whole idea of " anti " this or that, of fighting nature back into

some kind of truce--for which prices are always paid somewhere--is

disquieting.

As a researcher used to looking at these, I can only say there is more

longrange clinical experience with spiro than inspra, currently the

only aldo/K/BP balancers that seem to work. The so-called " side

effects " (that's a Pharmo PR term, my own term is " drug toxicity " )

don't seem to plague the majority of female pts, and the androgyn

suppression for males varies. With a careful DASH low salt diet, the

med amounts may be reduced significantly, or even eliminated if

exercise and general health is achieved. Maybe. Sure seems worth a

shot.

The leading Chinese Western physician & Peking-university trained

accupuncturist in our area, Darren Chen, MD, said in a recent interview

about some projects he participates in to utilise the best from both

worlds, " no, I'm afraid this is one of the diseases involving multiple

systems centered on salt metabolism, something the naturopathic and

alternative practitioners who are honest will tell you is uncovered in

their systems. They can treat symptoms and look at it in another way,

but to stay salt and potassium balanced and keep your blood pressure in

the safety range, you're pretty much going to have to block the excess

aldosterone and limit salt in diet. " It is interesting that the salt,

or electrolyte metabolism is impressing the Western research community

as a possible " governing system over all others, " and this work is

exciting, often listed under " calcium metabolism. "

I wish I had met him earlier, but was just listening to standard

medical boilerplate, which is incorrect in the case of PA. Mostly, it

turns out, because for a very long time Western doctors thought it is

so rare. It isn't, and the big institutions are rushing around

changing their statements now.

Of course there is a chance a tumor is causing all of it, in which case

you'll be free of meds. The ACTH-stimulated AVS is a procedure which

has been made very safe, and I haven't heard of a flank-opening

adrenalectomy in my neck of the woods in years. The laporoscopy is

well-practiced and safe. I'd just make sure someone knows the gland is

producing excess aldo, and then that both surgeons (AVS &

adrenalecomty) have say, at least a hundred procedeures under their

belts.

How can anyone learn, if we all demanded this? At teaching hospitals

with faculty who've done hundreds right there. At UCSF, this is what

they do.

Just my 2 cents.

Dave

On Jul 6, 2005, at 2:34 PM, joidevivre2day wrote:

> Hi,

> I'm newly diagnosed with Primary Hyperaldosteronism. I'm still getting

> tests. Just about to get the adrenal sampling. I'm terrified of the

> possibility of taking Spirorolactone (forgot the spelling) for the rest

> of my life. I've always taken good care of my body and the thought of

> that medicine scares me. Any advice on holistic approaches used? Any

> information/personal experiences with this medication? I've heard some

> people can get the laporoscopy in medical centers rather than the cut

> if surgery is required, I live in Fredericksberg VA. Do you know of

> centers who do the smaller incisions. Any of your personal experiences

> would be appreciated.

> Thanks

>

July 7, 2005

Hi,

I was just diagnosed with primary Hyperaldosteronism in Feb 2005, I have

been on SPIRO since then and have been feeling fine, I did not need the

surgey because I did not have a tumor on my glands. i do take Shape works

(Herbalife) supplements and had no side effects from using the 2 together.

Tracey

newly diagnosed

Hi,

I'm newly diagnosed with Primary Hyperaldosteronism. I'm still getting

tests. Just about to get the adrenal sampling. I'm terrified of the

possibility of taking Spirorolactone (forgot the spelling) for the rest

of my life. I've always taken good care of my body and the thought of

that medicine scares me. Any advice on holistic approaches used? Any

information/personal experiences with this medication? I've heard some

people can get the laporoscopy in medical centers rather than the cut

if surgery is required, I live in Fredericksberg VA. Do you know of

centers who do the smaller incisions. Any of your personal experiences

would be appreciated.

Thanks

July 7, 2005

You have nothing to worry about. I did enough worrying about taking

Spiro AND having adrenal vein sampling for ALL of us (ha ha). The AVS

was a breeze, and I have been on Spiro for over a week - no side

effects at all. In fact, I feel better and have more energy than I

have in a long time. Still on K supplements too, but may be weaned off

those next week.

Hang in there. It is so worth just knowing your exact diagnosis.

Medication should be tried before surgery, in my opinion.

I don't live in your area, but check out the Society of Interventional

Radiologists website (not sure of the URL); that is where I found my

wonderful doctor for the procedure.

Best of luck! Everything will be fine.

Ann

> Hi,

> I'm newly diagnosed with Primary Hyperaldosteronism. I'm still

getting

> tests. Just about to get the adrenal sampling. I'm terrified of the

> possibility of taking Spirorolactone (forgot the spelling) for the

rest

> of my life. I've always taken good care of my body and the thought

of

> that medicine scares me. Any advice on holistic approaches used?

Any

> information/personal experiences with this medication? I've heard

some

> people can get the laporoscopy in medical centers rather than the cut

> if surgery is required, I live in Fredericksberg VA. Do you know of

> centers who do the smaller incisions. Any of your personal

experiences

> would be appreciated.

> Thanks

July 7, 2005

KEEP US POSTED.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

July 7, 2005

READ MY ARTICLE AND TAKE A COPY TO YOUR ENDO.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

July 7, 2005

Be sure they do ACTH infusion before and during the AVS.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

July 7, 2005

In a message dated 7/7/05 10:23:40 AM, tbelboda@... writes:

i do take Shape works

(Herbalife) supplements

I HAVE NO IDEA WHAT IS IN THIS AND do not recommend anyone take these uncontrolled products.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

July 7, 2005

the Yellow Emperor had it right a long time ago-4000 years ago I belive. When to much salt is taken the pulse hardens and strokes arise.

In a message dated 7/6/05 8:31:33 PM, dave@... writes:

I understand, it is hard to accept taking meds at all, much less for

life. Recent revelations about how drug companies approve and sell

them does little to increase confidence. Yes, they are controlled for

consistency and ingredients, which most "health food" preparations are

not, but what many doctors don't seem to understand is that it is the

very power of these chemically created substances that worries people.

The whole idea of "anti" this or that, of fighting nature back into

some kind of truce--for which prices are always paid somewhere--is

disquieting.

As a researcher used to looking at these, I can only say there is more

longrange clinical experience with spiro than inspra, currently the

only aldo/K/BP balancers that seem to work. The so-called "side

effects" (that's a Pharmo PR term, my own term is "drug toxicity")

don't seem to plague the majority of female pts, and the androgyn

suppression for males varies. With a careful DASH low salt diet, the

med amounts may be reduced significantly, or even eliminated if

exercise and general health is achieved. Maybe. Sure seems worth a

shot.

The leading Chinese Western physician & Peking-university trained

accupuncturist in our area, Darren Chen, MD, said in a recent interview

about some projects he participates in to utilise the best from both

worlds, "no, I'm afraid this is one of the diseases involving multiple

systems centered on salt metabolism, something the naturopathic and

alternative practitioners who are honest will tell you is uncovered in

their systems. They can treat symptoms and look at it in another way,

but to stay salt and potassium balanced and keep your blood pressure in

the safety range, you're pretty much going to have to block the excess

aldosterone and limit salt in diet." It is interesting that the salt,

or electrolyte metabolism is impressing the Western research community

as a possible "governing system over all others," and this work is

exciting, often listed under "calcium metabolism."