A Message from the Moderator ... was Re: Re: Hanna's Ped appt

[Guest guest]

Georgina,

I so much appreciate all the searching you do to help us be informed. It seems

most days I just barely have time to get on the computer to read the posts here,

I know I would not have the time or knowledge how to do all the searching you

do. Thank you.

Veri

A Message from the Moderator ... was Re: Re: Hanna's Ped appt

Hi Everyone,

We're an intelligent group of people and we all share a common bond:

Juvenile Arthritis. This group is a place to share the knowledge we have,

and to hopefully learn more, about juvenile arthritis.

A wise person once said something along the lines of ... a little bit of

knowledge can be a very dangerous thing.

I believe that a person should gather as much reliable information as

possible, from many trustworthy sources, before making any important

decision. I don't wish to appear argumentative or disrespectful of anyone's

beliefs and I am most certainly not here to tell anyone what they should or

shouldn't do, but I do feel that it's important for people to be aware of

'both sides of a story', especially before making a decision about their

child's health and well-being.

If we know the facts, we can look at the pros and cons and become better

able to weigh the risks and benefits. Which is why the majority of my posts

on the diagnostic and therapeutic agents used in rheumatology are from

peer-reviewed research published in respected medical and scientific

journals. We get to see the good, the bad, and the ugly. For instance, in

studies to examine drugs we get details about side effects that occurred in

the test population, even if they wasn't necessarily related to the agent

being tested - as well as the rates and types of purported benefits.

" The devil is in the details " , some people say, and as much as I dislike

having to appear yet again as the 'devil's advocate' I do believe that it's

important to disclose current mainstream opinion when unconventional methods

of diagnoses or treatment are discussed on this board. I don't want anyone

to be misled. Therefore, I've put together a message titled, " Mainstream

Thoughts on the Alcat Test " and will be sending it out right after this one.

Aloha,

Georgina

Re: Hanna's Ped appt

So glad to hear that this appt went well. How much weigh has Hannah

lost?

Did you know the thyroid tests can fluctuate? Aundrea has had these

done a few times and one time they came back on the border of being

concerning but all the two other times they were normal.

Were you able to speak to someone about ordering the alcat test?

I sure would be interested to know how that would turn out for Hannah.

(Aundrea 13 fibromyalgia/gerd)

>

> We had an awesome visit with Hannah's ped today for her annual

physical. Obviously we talked about all her issues. He's pleased

with her asthma (first time ever). He is not as concerned about

her weight loss as the GI doctor was because she does not look like

she's underweight and is mostly muscle. He agreed with having her

take the Carnation Instant breakfast every day (even told her to make

a smoothie out of it). He is adding a daily mulit-vitamin with iron

and a calcium supplement. He will recheck her weight in one month.

The hope is she stays the same (he said he would not be concerned

with even a 1-2lbs more weight loss, but more than that would be very

concerning).

>

> As far as her joints go, he was totally open to all of the

suggestions we brought back from conference. He is checking her

cholesterol (for the weight issues). He also ordered a full thyroid

panel (I believe it is 4 separate tests). We then talked about the

parathyroid, which is not his area. I called my endocrinologist

friend and he suggested that a calcium and vitamin D level be checked

first. If those are normal there is no need for parathyroid. So the

ped called me this evening and added those too. He is checking into

where around here we can have a bone density done. Our clinic does

not have the software for anyone under 18. So that is in process,

but on hold too. He is going to hold off on ordering any MRI's until

he sees the results of the bone density. He also agreed that she

could very well have " mechanical arthrits " . Again he will wait for

the bone density.

>

> He also checked her skin for those strange spots she has. He will

be watching them and told her to wash the spots with Head N

Shoulder's shampoo. There is a derm problem that this helps.

>

> So overall a great visit. Will keep you posted on the results.

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines;

stomach ulcers

> Sending prayers & happy thoughts,

> Beth

>

>

[Guest guest]

Hi ,

Don't get me wrong. I don't take issue with a parent eliminating a non-essential

food item from their child's diet. Of course not. That wasn't my point. When

there are proven and scientifically validated methods for assessing allergies

and food intolerances, what sense does it make to use an unreliable, unproven,

unorthodox, alternative method that has no diagnostic value?

The manufacturers and proponents of the Antigen Leukocyte Cellular Antibody Test

argue that the test is predictive for assessing a variety of conditions. When

evaluated, it's predictive value was found to be extremely poor and not of

benefit in identifying the trigger of patients' symptoms. When patients used the

diets recommended by the test results, and were followed up by dieticians and

doctors, there was no improvement in symptoms.

The evidence has already been gathered. The ALCAT test has been studied,

scientifically tested, and the results are in. The ALCAT test, and

recommendations based on results of the ALCAT test, have no real value in

improving symptoms. The suppliers claims are false and not reliable. When

subjected to rigorous testing, results are not reproducible. The overwhelming

consensus is to NOT use the test in the evaluation of allergic or intolerance

reactions or for diagnostic purposes. It does not do what its proponents claim

it does.

There are many unscrupulous, unethical, people in this society - people who prey

upon others and take advantage of them for their own gain. Some are easy to

spot. Others are far less visible. If one of these types was given an

opportunity, they might try to sell a car without disclosing pre-existing

mechanical problems. In a different scenario, they might offer to do a test that

had no real value ... and even charge money for it. They might give misleading

advice or make unsubstantiated recommendations, all in the guise of trying to be

helpful.

Many states have instituted the so-called Lemon Law to help consumers avoid

being ripped off by unscrupulous car sellers. An educated consumer will check

the car's history and have it evaluated by a mechanic before making the

purchase, if they aren't confident in their own judgment. It's a bit different

in the health care field of course, especially with regards to complementary and

alternative medicine. The 'buyer' must beware. Regulations aren't as stringent

and there's more room for opportunity for those who might choose to take

advantage of unsuspecting consumers. Not all will, of course, but there will

always be those who do.

If a particular practice has been evaluated by professionals, if it's been

tested and scrutinized and determined to be misleading, worthless, fakery, it's

important for people to be aware of this so they're not unnecessarily taken

advantage of. The ALCAT was popularized in the 1980's. My understanding is that

by the mid 1990's it had all but disappeared, except for a few die-hard

alternative care practitioners. If there's a chance that it's making a come-back

now, in the 21st century, I think it's important that we educate ourselves and

the people we care about. A Google search yielded 280,000 results in 0.04

seconds, most of them sites that have a financial interest in related product

sales. I think it's time to inform people. If they choose, armed with knowledge,

to go ahead and do it anyway ... that's their personal choice. So be it : )

All that said, ... it's probably been about 5 years since we first met

here. I love your input and your willingness to share about your experiences.

Your friendliness. You've been very helpful to so many people. Sort of feels

like I've known Aundrea since she was little and now, she's blossoming into such

a beautiful young woman ... one you can be very proud of : ) I know that it

hasn't been easy, there have been so many obstacles along the way, and blessings

too. With your support and guidance, and love, Aundrea thrives. That's what

matters most. Our common bond, our children's well-being, is the priority ...

and we can agree to disagree on some of the other issues, yah?

Love and Aloha,

Georgina

A Message from the Moderator ... was Re: Re: Hanna's Ped appt

Hello Georgina,

First of all I want to thank for providing so much information on the

ALCAT test. It was an intersting read.

We had a naturopath perfom Aundrea's blood test and run the ALCAT

test.

The one thing I am fairly certain of is she wont have any terrible

side effects from removing sugar or coco from her diet. :-) It's

worth a try for us to see if it helps.

On the other hand we did try methotrexate for two years and high dose

NSAIDS for a few years and the side effects from those treatments had

quite a negative experience for Aundrea.

Parents face so many challenges in trying to find the answers for

their chronically ill children. The search opens up doors to

supplements, biofeedback, physical therapy, aquatic therapy,

chiropractic, yoga, diet changes and the list just goes on and on.

I am glad to be able to share what are experiences have been and for

the most part it's been sharing what hasn't worked while still

searching for answers.

Thank you for providing this forum that allows us to share our

experience in this journey as we determine what we believe is the

best path for out child.

Blessings,

(Aundrea 13 Fibromyalgia, IBS)

> >

> > We had an awesome visit with Hannah's ped today for her annual

> physical. Obviously we talked about all her issues. He's pleased

> with her asthma (first time ever). He is not as concerned about

> her weight loss as the GI doctor was because she does not look like

> she's underweight and is mostly muscle. He agreed with having her

> take the Carnation Instant breakfast every day (even told her to

make

> a smoothie out of it). He is adding a daily mulit-vitamin with iron

> and a calcium supplement. He will recheck her weight in one month.

> The hope is she stays the same (he said he would not be concerned

> with even a 1-2lbs more weight loss, but more than that would be

very

> concerning).

> >

> > As far as her joints go, he was totally open to all of the

> suggestions we brought back from conference. He is checking her

> cholesterol (for the weight issues). He also ordered a full thyroid

> panel (I believe it is 4 separate tests). We then talked about the

> parathyroid, which is not his area. I called my endocrinologist

> friend and he suggested that a calcium and vitamin D level be

checked

> first. If those are normal there is no need for parathyroid. So the

> ped called me this evening and added those too. He is checking into

> where around here we can have a bone density done. Our clinic does

> not have the software for anyone under 18. So that is in process,

> but on hold too. He is going to hold off on ordering any MRI's until

> he sees the results of the bone density. He also agreed that she

> could very well have " mechanical arthrits " . Again he will wait for

> the bone density.

> >

> > He also checked her skin for those strange spots she has. He will

> be watching them and told her to wash the spots with Head N

> Shoulder's shampoo. There is a derm problem that this helps.

> >

> > So overall a great visit. Will keep you posted on the results.

> >

> > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines;

> stomach ulcers

> > Sending prayers & happy thoughts,

> > Beth

> >

> >

[Guest guest]

Good Morning, Georgina:

I have not really had time to follow this particular correspondence, but

read your post with great interest. I too believe that many unscrupulous

manufacturers take advantage of consumers who are desperate to be healthier.

I always test these alternative methods by going to the following link.

http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/allergytests.html

They are a bit hardcore, but through the years, they’ve saved me hundreds of

dollars and helped me avoid various scams and rip-offs. (Excuse me if this

has already been circulated.)

Take care all,

From: [mailto: ] On Behalf

Of Georgina

Sent: Wednesday, September 03, 2008 2:15 AM

Subject: Re: A Message from the Moderator ... was Re: Re: Hanna's Ped

appt

Hi ,

Don't get me wrong. I don't take issue with a parent eliminating a

non-essential food item from their child's diet. Of course not. That wasn't

my point. When there are proven and scientifically validated methods for

assessing allergies and food intolerances, what sense does it make to use an

unreliable, unproven, unorthodox, alternative method that has no diagnostic

value?

The manufacturers and proponents of the Antigen Leukocyte Cellular Antibody

Test argue that the test is predictive for assessing a variety of

conditions. When evaluated, it's predictive value was found to be extremely

poor and not of benefit in identifying the trigger of patients' symptoms.

When patients used the diets recommended by the test results, and were

followed up by dieticians and doctors, there was no improvement in symptoms.

The evidence has already been gathered. The ALCAT test has been studied,

scientifically tested, and the results are in. The ALCAT test, and

recommendations based on results of the ALCAT test, have no real value in

improving symptoms. The suppliers claims are false and not reliable. When

subjected to rigorous testing, results are not reproducible. The

overwhelming consensus is to NOT use the test in the evaluation of allergic

or intolerance reactions or for diagnostic purposes. It does not do what its

proponents claim it does.

There are many unscrupulous, unethical, people in this society - people who

prey upon others and take advantage of them for their own gain. Some are

easy to spot. Others are far less visible. If one of these types was given

an opportunity, they might try to sell a car without disclosing pre-existing

mechanical problems. In a different scenario, they might offer to do a test

that had no real value ... and even charge money for it. They might give

misleading advice or make unsubstantiated recommendations, all in the guise

of trying to be helpful.

Many states have instituted the so-called Lemon Law to help consumers avoid

being ripped off by unscrupulous car sellers. An educated consumer will

check the car's history and have it evaluated by a mechanic before making

the purchase, if they aren't confident in their own judgment. It's a bit

different in the health care field of course, especially with regards to

complementary and alternative medicine. The 'buyer' must beware. Regulations

aren't as stringent and there's more room for opportunity for those who

might choose to take advantage of unsuspecting consumers. Not all will, of

course, but there will always be those who do.

If a particular practice has been evaluated by professionals, if it's been

tested and scrutinized and determined to be misleading, worthless, fakery,

it's important for people to be aware of this so they're not unnecessarily

taken advantage of. The ALCAT was popularized in the 1980's. My

understanding is that by the mid 1990's it had all but disappeared, except

for a few die-hard alternative care practitioners. If there's a chance that

it's making a come-back now, in the 21st century, I think it's important

that we educate ourselves and the people we care about. A Google search

yielded 280,000 results in 0.04 seconds, most of them sites that have a

financial interest in related product sales. I think it's time to inform

people. If they choose, armed with knowledge, to go ahead and do it anyway

..... that's their personal choice. So be it : )

All that said, ... it's probably been about 5 years since we first met

here. I love your input and your willingness to share about your

experiences. Your friendliness. You've been very helpful to so many people.

Sort of feels like I've known Aundrea since she was little and now, she's

blossoming into such a beautiful young woman ... one you can be very proud

of : ) I know that it hasn't been easy, there have been so many obstacles

along the way, and blessings too. With your support and guidance, and love,

Aundrea thrives. That's what matters most. Our common bond, our children's

well-being, is the priority ... and we can agree to disagree on some of the

other issues, yah?

Love and Aloha,

Georgina

A Message from the Moderator ... was Re: Re: Hanna's Ped appt

Hello Georgina,

First of all I want to thank for providing so much information on the

ALCAT test. It was an intersting read.

We had a naturopath perfom Aundrea's blood test and run the ALCAT

test.

The one thing I am fairly certain of is she wont have any terrible

side effects from removing sugar or coco from her diet. :-) It's

worth a try for us to see if it helps.

On the other hand we did try methotrexate for two years and high dose

NSAIDS for a few years and the side effects from those treatments had

quite a negative experience for Aundrea.

Parents face so many challenges in trying to find the answers for

their chronically ill children. The search opens up doors to

supplements, biofeedback, physical therapy, aquatic therapy,

chiropractic, yoga, diet changes and the list just goes on and on.

I am glad to be able to share what are experiences have been and for

the most part it's been sharing what hasn't worked while still

searching for answers.

Thank you for providing this forum that allows us to share our

experience in this journey as we determine what we believe is the

best path for out child.

Blessings,

(Aundrea 13 Fibromyalgia, IBS)

> >

> > We had an awesome visit with Hannah's ped today for her annual

> physical. Obviously we talked about all her issues. He's pleased

> with her asthma (first time ever). He is not as concerned about

> her weight loss as the GI doctor was because she does not look like

> she's underweight and is mostly muscle. He agreed with having her

> take the Carnation Instant breakfast every day (even told her to

make

> a smoothie out of it). He is adding a daily mulit-vitamin with iron

> and a calcium supplement. He will recheck her weight in one month.

> The hope is she stays the same (he said he would not be concerned

> with even a 1-2lbs more weight loss, but more than that would be

very

> concerning).

> >

> > As far as her joints go, he was totally open to all of the

> suggestions we brought back from conference. He is checking her

> cholesterol (for the weight issues). He also ordered a full thyroid

> panel (I believe it is 4 separate tests). We then talked about the

> parathyroid, which is not his area. I called my endocrinologist

> friend and he suggested that a calcium and vitamin D level be

checked

> first. If those are normal there is no need for parathyroid. So the

> ped called me this evening and added those too. He is checking into

> where around here we can have a bone density done. Our clinic does

> not have the software for anyone under 18. So that is in process,

> but on hold too. He is going to hold off on ordering any MRI's until

> he sees the results of the bone density. He also agreed that she

> could very well have " mechanical arthrits " . Again he will wait for

> the bone density.

> >

> > He also checked her skin for those strange spots she has. He will

> be watching them and told her to wash the spots with Head N

> Shoulder's shampoo. There is a derm problem that this helps.

> >

> > So overall a great visit. Will keep you posted on the results.

> >

> > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines;

> stomach ulcers

> > Sending prayers & happy thoughts,

> > Beth

> >

> >

[Guest guest]

That was a good link but I was a little confused by something that

struck me as odd. It mentioned that the IgG blood serum testing for

food allergies isn't supposedly a good measure of allergies. Almost

ALL pediatricians now use this test to test for severe peanut and egg

allergies beginning at 12 months (prior to these foods being

introduced to infants). Skin testing although reliable just isn't

the " norm " anymore. The only reason I know this is because of my son

's allergies in infancy and now his asthma. Our Pediatric

Pulmanologist, allegist, and pediatrician all use the blood serum

testing (from Children's of DC, Washington, and town

Med. ---these are definitely not " quacks " in their fields). The

allegist did both skin testing and the blood serum. There are

reasons behind both being important measures.

-Hadley (Isabelle, 4.5 years, JIA, , 2 yrs. asthma, n 16

years, and Katharine, 14 years severe allergies).

>

> Good link . Thanks for sending it.

>

> sonia (Aundrea 13 fibromyalgia, ibs)--

>