Re: Uh oh - drug companies again- Jodi

[Guest guest]

Jodi,

A few people on the list have expressed a preference that the use,

or over use, of drugs not be a subject for discussion on this list

because of past problems. Based on all the scandals happening in

the drug industry, lack of FDA over site, and conflict of interests

on the doctors' part, I believe that this is a topic that should

not be swept under the rug. Since I asked to be removed from this

list a couple days ago, I received several private emails asking

that I not leave and continue to address the subject. Against my

better judgment I will continue to participate.

Knowledge is power. It is my opinion that because of a systemic

problem in the drug industry, this listserve lacks enough knowledge

on some very basic information concerning the treatment of our

children with powerful drugs. It's only natural to feel that

some

ones doctor is the best and would never do anything that jeopardizes

their child's health. Don't get me wrong, I'm not

implying that

they are sinister people; they may be just caught up in a system

that is broken. Rather than fighting over this issue, why don't

we agree to get to the root cause of at least one of these problems.

How else can the consumer stop, or at least minimize, a portion of

this systemic problem? It has to start somewhere.

Jodi, as a possible solution I am proposing that you and me draft

some type of document that each of everyone's doctors associated

with RSS complete and sign. Also, why not implement a rule

governing this listserve that restricts the use of any doctor's

name that has not completed and signed this affidavit. This will

accomplish several important points; first it will begin to let the

medical industry know that we are concerned about impropriety, or at

least the appearance of impropriety. Second, the medical industry

is like any other business, they survive financially on referrals

and from everything I have observed from this list is that there are

a lot of referrals going on. Third, if a doctor has conflicts of

interest you will at least be an informed consumer, as will the

other members on this list who are indirectly receiving this

doctor's advice.

Disclosure statements are now being required in most industries, and

they are getting even more stringent as a result of recent scandals

as evidenced by Elliot Spitzer's actions with the insurance

industry

and the mutual fund industry. Why in light of such a poor track

record over the past 20 years should the drug industry and medical

profession be any different?

I realize that someone new to this list would not be familiar with

this rule, so there would be some period allowed for their doctor to

complete the needed affidavit. In the meantime they would be able

to use their doctor's name.

What say you, are you willing to jump on board with me to address

this issue?

Jill

Let's tread carefullly on the subject, my fellow listserve members.

We have been down this road before and it has caused many hurt

feelings and complications. I am not saying that we should not

listen to what we have to say to each other, but we must also

respect the decisions of each other and the routes that we decide to

take. We have been affected by other who-will-remain-unnamed people

and it has caused major rifts among us.

Please bare in mind that this is a sharing community, with the right

to voice an opinion, but not judge what we decide to do for our own

children. I agree that some of the meds are scary, but we all try

to make informed decisions and do what we feel is right for what we

believe in. This is a support group - not a lobby.

Jodi Z

[Guest guest]

I did not respond the other day as I was way too offended – I am a 31

year old adult with an MBA and consider myself to be educated and

open to others who want to educate. HOWEVER, you made me feel like

you were lecturing to a 2 year old and that YOU were the only one

with the " right " opinion. I STRONGLY disagree with your idea for a

petition.

Additionally, I have never seen you reference your children, their

ages, whether they have RSS or SGA etc. So, do you have a child

affected? If so, learn from others and let from learn from you –

don't force your opinion upon others.

I came here to learn and get support from others not for lectures

from someone I have never heard of.

I would be MUCH more interested in hearing your point of view if you

were not so guerrilla about it.

What do you care if people are referring each other to Doctors! If

you do not ever want to learn about your children's possible future

doctors and why other parents like and dislike them then that is fine

but I think you should be careful about criticizing others

discussions.

By the way, I'm not trying to get you to leave but to be a little

more careful in how you address others. I don't care if a parent

here has an 8th grade education – they are not unintelligent and all

of us work hard to completely research and understand what our

children may or may not experience and how others have dealt with the

same. You obviously are enthusiastic and have a social-minded

conscience – just remember to present your ideas a little differently

and they may be received more warmly….

Just a thought.

, mom to 5 and Emerence SGA poss RSS 22 mo.

>

> Let's tread carefullly on the subject, my fellow listserve

members.

> We have been down this road before and it has caused many hurt

> feelings and complications. I am not saying that we should not

> listen to what we have to say to each other, but we must also

> respect the decisions of each other and the routes that we decide

to

> take. We have been affected by other who-will-remain-unnamed people

> and it has caused major rifts among us.

>

> Please bare in mind that this is a sharing community, with the

right

> to voice an opinion, but not judge what we decide to do for our own

> children. I agree that some of the meds are scary, but we all try

> to make informed decisions and do what we feel is right for what we

> believe in. This is a support group - not a lobby.

>

> Jodi Z

[Guest guest]

,

I absolutely agree with you!

Furthermore Jill, you previously stated that by your count one child

was on 31 medications. First of all, how did you determine that?

Second, what business is it of yours? Third, why were you counting?

And as said, where is the information about your child? Age,

medical information, location, anything?

Judith, Steve, (RSS) and (non RSS) 4 3/4 year old twins

> >

> > Let's tread carefullly on the subject, my fellow listserve

> members.

> > We have been down this road before and it has caused many hurt

> > feelings and complications. I am not saying that we should not

> > listen to what we have to say to each other, but we must also

> > respect the decisions of each other and the routes that we

decide

> to

> > take. We have been affected by other who-will-remain-unnamed

people

> > and it has caused major rifts among us.

> >

> > Please bare in mind that this is a sharing community, with the

> right

> > to voice an opinion, but not judge what we decide to do for our

own

> > children. I agree that some of the meds are scary, but we all

try

> > to make informed decisions and do what we feel is right for what

we

> > believe in. This is a support group - not a lobby.

> >

> > Jodi Z

[Guest guest]

, Jodi and Others,

Your points of view are well taken and my passion for this issue has

been aggressive. I worked in medical research involving the drug

industry and saw first hand how many times results were often skewed

to fit the desired result of the drug companies. There are many

ways to manipulate the data, believe me. , my daughter is 5

years old and is mildly affected by RSS. I believe my acknowledge

base is not well suited for this group and would only offend many

parents beliefs. As I said when I re-enlisted back on this

listserve I did it reluctantly. Thank you for your comments and I

can completely understand your points of view. Once again, I have

gathered the information that I need and think its best for me to

move on. Best wishes to all in the New Year.

Jill

> >

> > Let's tread carefullly on the subject, my fellow listserve

> members.

> > We have been down this road before and it has caused many hurt

> > feelings and complications. I am not saying that we should not

> > listen to what we have to say to each other, but we must also

> > respect the decisions of each other and the routes that we

decide

> to

> > take. We have been affected by other who-will-remain-unnamed

people

> > and it has caused major rifts among us.

> >

> > Please bare in mind that this is a sharing community, with the

> right

> > to voice an opinion, but not judge what we decide to do for our

own

> > children. I agree that some of the meds are scary, but we all

try

> > to make informed decisions and do what we feel is right for what

we

> > believe in. This is a support group - not a lobby.

> >

> > Jodi Z

[Guest guest]

Gathered what information? I think you misunderstood our group from

the beginning. We are all just merely offering suggestions to help

each other out and to act as a support " web " . I was highly offended

by your comments as there are risks with everything. For

instance,scientific studies show that he hormones injected in the

foods (cows, pigs, etc) we eat have caused girls to get their

periods at a younger age yet it is still going on. Life is risk and

if you have issues with drug companies write your congressman. We

are just parents trying to cope with every day life of children with

special needs. Good Luck to you!

Mimi