Wednesday, February 21, 2007

Fail First, Medication Safety, Social Challenges

Fail First
This past weekend my wife and I participated in a parents’ retreat at our son’s high school. His school’s focus is on learning challenges for kids with significant social challenges. There are lots of kids with AD/HD and high functioning autism spectrum disorders at this school. The retreat was like an extended CHADD support group meeting-–focused on a half dozen important areas with experts and a lot of sharing and some tears.

One of the things all the families and their children had in common was that we were victims of a public educational “fail-first” approach. We each came to this school because the public school either completely failed our children or the school’s interventions were too little, too late. At least we found a learning environment where our kids are happy, academically successful, and learning good social skills. But it is such a societal shame that the educational system is designed to allow children to fail before anything can be done to help them.

CHADD is fighting against another fail-first policy dictated by many health plans. There are health-plan policies that will not pay for medications that effectively treat an individual’s AD/HD until that person has tried and failed to see any results on the plan’s medication of choice. We know from the Surgeon General's Report on Mental Health, that stimulant medications are highly effective for 75 percent to 90 percent of children. But the reverse is that the medication either has no effect or has significant side effects in roughly 10 percent to 25 percent of children.

Why do we allow health plans to institutionalize failure with 10 percent to 25 percent of persons with AD/HD? Think about it – we have designed a system that, in order to save a few dollars, puts persons with special health care needs at risk of failure before allowing a prescribing physician and the individuals or their family to use an FDA-approved medication of their choice.

FDA Announces Medication Safety Warning for AD/HD Medications
On February 21, the FDA announced that all manufacturers of medications to treat AD/HD must develop “Patient Medication Guides” to alert patients and their families to possible cardiovascular risks and risks of adverse psychiatric symptoms associated with the medicines.

What a quandary for adults with AD/HD and their families. Each family must weigh the benefits and risks in making decisions about medications. For most individuals with a correctly diagnosed condition of AD/HD, we know that medications, in combination with “multimodal treatment,” help reduce the symptoms of AD/HD and enhance functioning in everyday life. We also know the negative consequences of untreated AD/HD. But we have to recognize that for some individuals the side-effects may be negative.

We all must make these decisions based on our comfort level and in consultation with prescribing medical professionals. It is the obligation of each person with AD/HD, their family members, and prescribing professionals to closely monitor and report any changes in their wellbeing to reinforce the benefits and guard against the negatives. My 16-year-old son is fortunate in that he has been on AD/HD medications since he was 7 years old and has no health problems. But everyone has to make his or her own decision and be closely attuned to negative consequences.

One disturbing side-effect of the FDA announcement is that the “anti-psychiatry” crowd (those who deny the existence of childhood and other mental disorders) and the anti-pharmaceutical crowd (those who argue that medication is merely a marketing ploy to sell drugs for made-up problems) will widely use the FDA announcement to scare people against getting a medical assessment for AD/HD and related disorders and to scare people against using medications. Again, each of us needs to make informed decisions with our prescribing medical professional about the risks and benefits of using medication. I wish you success in making these difficult decisions.

The Importance of Social Skills
At our parents’ retreat, we learned that “the overwhelming majority of students with special needs fail at jobs because of a lack of effective interpersonal skills and/or social competencies.” While everyone needs academic proficiency to get a job, it is an individual’s social skills that will determine their tenure and success on the job. The school my son attends focuses on social skill development, positive social experiences, and promoting independence through personal responsibility.

We learned that poor language skills and poor or limited understanding of social cues in interpersonal communication contributes to problems in the workplace. We also learned that not understanding instructions, not attending well to tasks, and an inadequate sense of time contribute to job failure. We need to strive to find supports for ourselves and our loved ones to enhance their skills in a world full of demands, pressures, and fail-first policies.

May you find the support, patience, and peace that will help you succeed first and always!

Clarke

3 comments:

Anonymous said...

Instead of jumping to conclusions about whether a Child or an Adult is ADD or ADHD, Have you ever researched other information about INDIGO ADULTS AND CHILDREN?
There is so much of the labeling going on here now and days.
When I was a child growing up they did not have any of these so called disorders. You either were Sick with a Common Cold, or Mentally Ill.
There are similarities in both catergories, Indigo Children have the same Signs and Symtoms as an ADHD Child as well as Adults.
What is your theory on this Condition?

my email address is: me_positive2@sbcglobal.net

Tim MacGeorge said...

Response from Tim MacGeorge, Director, CHADD's National Resource Center on AD/HD:

Thank you for your comment.

Although you may not have been aware of AD/HD when you were growing up, AD/HD has been a recognized medical/mental health condition for more than a century. A German physician named Heinrich Hoffman referenced it in 1865, and it was first cited in the medical literature by the English scientist George Still in 1902. It is, in fact, among the most extensively researched of all conditions which typically have an onset in childhood or adolescence. Thousands of peer-reviewed and published research studies have been conducted about the causes of AD/HD, as well as the treatments that are known to be effective. The concept of 'indigo children,' on the other hand, currently has no such foundation in the scientific literature. While one can find numerous books and Web sites that discuss this so-called phenomenon, a broad search of the medical and scientific literature yields not a single research study that has been published on this topic. When sharing information about AD/HD, CHADD does not have its own "theory" of AD/HD, but rather looks to the medical and scientific communities for scientifically valid, evidence-based information about its causes, symptoms, and treatments. For more information on this, please visit the site of CHADD's CDC-funded National Resource Center on AD/HD at www.help4adhd.org.

Linda B said...

I spoke with a mom today who said that her family's Primary Care Physician had taken her 250 pound teen off of medication for AD/HD, a year ago, because it was no longer helping him, (though it had helped him for four years before it stopped working). The doctor told her that her son had reached the maximum recommended dose (72 mg./day of a long acting form of methylphenidate). The doctor said he was not allowed to prescribe any higher dose. She said her son had never had any problems with side effects and had been willing to take them. Mom says that since he's been off meds, he is spiraling out of control. My son has been on more methylphenidate than the "maximum recommended daily dose," most of his life, as prescribed by a child psychiatrist, and has clearly needed to be, so I wonder why a primary care doctor would say he is not allowed to prescribe more than the "maximum recommended" dose. Doesn't "maximum recommended" in the PDR just mean "not tested during the initial drug trials," instead of "contra-indicated?" Who oversees doctors? What trouble can a doctor get into for prescribing more than what's commonly "recommended?" Are PCPs under different practice protocols than psychiatrists? If so, it concerns me that our county's CMH is moving away from using psychiatrists toward just using primary care doctors, according to our CMH's Director of Child and Family Services. If there is a difference in scope of practice between what PCPs and psychiatrists are allowed to provide, I could bring this up to the board at the CMH annual public hearing on April 9th, to advocate for keeping psychiatrists on staff. Where can I find out what dosaging restrictions doctors may face?