CHADD ... Help or a hinderence?

[AnneM]

I am interested to know what others think about CHADD? When my son was diagnosed the very first piece of literature given to me by the clinic was the CHADD literature.

Looking back I am appalled at the literature that CHADD gave out ... I would never recommend this as reading to someone who is newly diagnosed. It was depressing and negative. It seemed to offer little in the way of positive thinking at all ..

Further down the road and I have learned much more about adhd and its comorbid conditions and I feel angry both at the way CHADD portrayed adhd in that literature AND that at our clinic this is the very FIRST and ONLY thing you are given to read ...

Any other thoughts on this?

[Linda]

I think CHADD probably has it's place,but the one thing that concerns me is they want money money money!!

[kstquilter]

i had fairly good luck with CHADD here. however, i went there many years after dd had been dx'd. you might be angry with them about things but i didn't have anywhere to go at all until i found them. i went for awhile and don't remember much about them asking for money.
i do remember feeling much better after some meetings and more depressed after some. things i hadn't thought of at the time was dd's ability to be able to drive safely. another parent was discussing how bad a driver their child was.
i think this is so much better than any CHADD meeting i went to. i feel so fortunate that we live in a time when the technology exists for us to be there for each other.
karen

[catatonic]

I do not believe that CHADD is truly an organization devoted to educating and helping those who have ADHD and their families.

The bulk of CHADD's funding comes from Ciba-Geigy, the manufacturer of Ritalin...a fact that CHADD kept carefully hidden until a PBS investigative documentary made this fact public.

CHADD recommends treating ADHD with medication and counseling (no surprise, considering those recommendations are paid for by drug company money). It makes no mention of other treatments proven effective, or of RISK-FREE treatments to attempt prior to medicating. (In fact, their website uses scare tactics and outright lies to discourage people from trying these treatments.) We were lucky enough to have a neurologist who ALWAYS recommends nutritional changes prior to prescribing medication.

The financial ties between CHADD and the pharmaceutical industry make highly suspect the type of information CHADD provides to parents, as well as the quality of that information. It's a serious enough problem that both the CDC and DEA have expressed their concern.

There's a good article on CHADD and it's less-than-wonderful reputation that says things much more concisely than I can:
www.fightforkids.com/chadd_lie.htm

[ohmama]

Very well said Cat. I agree completely. Sometimes it seems various organizations appear to be beneficial and they are to a certain extent, but there is often a compromise that is hard to swallow. I think this is the case with CHADD.

[geewiznit]

I must say that while the criticism of CHADD may be valid, the Fight for Kids site that had that article looks pretty shady to me--basically in denial that ADHD exists and rabidly anti-med. I wouldn't trust their content, much, given their own agenda.

[catatonic]

Geewiznit, you're right about the fightforkids website being on the extremist end of the spectrum. For those of us dealing with children who have ADHD, we know that it is very real and those claims that it doesn't exist seem pretty ridiculous.

If you're interested, there's a transcript from the public television documentary that originally revealed the Ciba-Geigy (now Novartus) connection to CHADD - a television panel discussion that included CHADD executives, doctors on both sides of the medication issue, parents of ADHD children, and the children themselves. It's pretty interesting reading, although its overall anti-medication slant may be offensive to some people. You can find it here: www.add-adhd.org/ritalin_CHADD_A.D.D.html

[GSDMommy]

I read the whole page and found it interesting. My first reaction is this: there is an assumption by people that the Dr is always the best source of info. I think the best idea is for the medical profession to refer people to several sources of info. The reality is the docs get the handouts brought to them. I bet because of Novartis' involvement with this, the drug reps bring the handouts with the to the offices. The docs hand it out thinking nothing of it. The parents need to know to look around at all sources of info.

As a parent who medicates her kids from 4 yo on, I know I have tried the diet and supplementation route first. It is genetic. It is treatable with drugs OTHER than ritalin. I don't think I would put a child of mine on ritalin again because of what I saw with the two oldest. I wouldn't have put my third on ritalin, but they came out with strattera and that has been great. It reduced the aggression, and the dangerous stuff happening at night. Without the meds, he wouldn't sleep through the night. I have always advocated not letting the teachers know about medicating the kids. I give them a medication vacation at unannounced times of the school year <not near holidays or any stressful times for child or teacher> and see if any reports of behavior come back. There are always mitigating factors, but we all deal with some degree of behaviors. There are treatments. There are always options, but the fact is you have to try all sorts of stuff and get your own info. The drug company has the resources to get their info out there when other groups don't. I think it should be possible to have a non-profit ADHD/ADD group that meets and can provide mentoring for newly diagnosed families about the options they truly have. In Utopia, there would be a representative from all sides of an issue available to anyone making a medical decision! I wish! I think that people should be made aware of the Novartis connection to CHADD. I think they shouldn't charge due to their connection. But then, this is my feeling.........others will feel differently and I don't have a problem!

Thoughts from an active mind....sorry if I posted another novel!!LOL

[SKay]

I think it should be possible to have a non-profit ADHD/ADD group that meets and can provide mentoring for newly diagnosed families about the options they truly have. In Utopia, there would be a representative from all sides of an issue available to anyone making a medical decision!

GSDMommy, I agree--for all medical issues, not just ADHD.

I was going to say more, but I don't want to get off-topic.

[mctavish23]

Hi,

I just wanted to say how interesting GSD's post was. I have several pediatrician friends who are upset with the way Lilly is marketing Straterra. What they told me was that they are getting lists from pharmacies of stimulant users( I have no idea how that is happening) and then sending them direct mailings that they felt were bordering on scare tactics. Obviously its all about $$$ in the end, but I liked what I have read here.There were many excellent suggestions.

I would love it if all the research on nutrition did pan out so that mainstream science accepted it. At any rate, I agree that trying different things and finding out for yourself and your family is one of the best ways to learn what works and what doesnt. I also think that not telling the teacher about meds, is very interesting and would make for a fascinating research study of the way teachers perceive students.Its probably not practical but it would be fun to see those data.

As far as CHADD goes, I don't know enough one way or the other to really comment on it.

Thanks and take care.

mctavish23(Robert)

[catatonic]

GSDMommy, I'm totally in agreement with you. No matter what way we, as parents, choose to treat our children's ADHD, we need to have access to information about a variety of treatment approaches and the pro's and con's of all of them. And it's only fair that we know who is sponsoring that information, because financial backing has a lot to do with the resulting slant of the information. Unfortunately, only the pharmaceutical companies have the kind of resources necessary to make their literature available in every doctor's office across the country. (This does NOT mean I'm saying that the medications are bad, merely that we shouldn't have to rely on the companies that make them as our ONLY source of information. That is a dangerous set-up...fox watching the hen house and all that.)

[Allanque]

mctavish23 said:

What they told me was that they are getting lists from pharmacies of stimulant users( I have no idea how that is happening) and then sending them direct mailings that they felt were bordering on scare tactics.

*blinks*

*blinks again*

So...isn't that kinda illegal? Under the patient privacy thing?

[shelli]

I have not had any dealings with CHADD. We do not have one here or one even close enough to go to . You are right about the literature in the Doctors office, it comes from the drug companies. And yes the drug representitive can go to the pharmacy and see how many prescriptions the doctor has wrote for a certain drug. I was not aware that the pharmacy can release the names of the people though. I would think that would violate HIPPA.
Matter of fact the doctor I work for just gave me a tape on adhd, he recently was given from an Eli Lilly rep. The tape was not helpful at all and I will not use it to educate my patients, it really pushed meds frontline. Imagine that!!!
We have a high load of medicaid patients in our area and hardly any psychs. I was thinking of talking with our local Department of human services about getting some sort of grant to purchase teaching material and I am sure the hospital that owns the clinic I work in would do some funding to buy resources for education. The questions is which resources?
shelli

[mctavish23]

I dont know, you would think so . My impression was that they were buying the lists from major pharmacy chains. They were getting calls from upset parents tho, not only as to the contact but also the accompanying material(s). To change or stop meds is natural but to change solely due to pressure or hype is obviously a problem.

Thanks for the reply.Take care.

mctavish23(Robert)

[GSDMommy]

McTavish,

I just read your post about the pharmacy releasing the lists of stimulant users. If your pediatrician friends know the stores doing this, then I would be curious to know if they had alerted HIPAA. I feel sure they keep the lists due to the controlled nature of the stimulant meds for DEA, but to release them to a company seems to me to be illegal. I am surprised Lilly would make use of illegal information for this purpose since it is so traceable.

The information game is all about spin. The ability to promote your opinion is basedon your ability to get your info to the most users. The medical profession has turned into a consumer driven market. If the patients are asking for something, the market responds. This has changed faster than people's perception of the medical world unfortunately. Some patients nee consumers have naively operated under the assumption that drug companies and pharmacies are operating solely in their best interests.

I think if one piece of info needs to be gotten out there is that people need to be as skeptical with treatment approaches as they are about car buying. Caveat emptor!