Diagnosis and Treatment Concerns: The Ideal versus Reality

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Working Together - Finding help for ADHD can be a challenge, but it's worth the effort. The right treatment can be life-changing.

This article is part of the series: Find Treatment and Support. You may want to start there.

In the real world, finding a provider well versed in ADHD can be a challenge. Well known diagnosticians don’t have to advertise, while others claim experience, but lack the expertise in treating all the aspects of the disorder. A missed or incorrect diagnosis delays getting the help you need. It may also be difficult to identify other disorders that so often accompany ADHD. Many physical or mental disorders have similar symptoms and make a correct and complete diagnosis challenging. Emotional difficulties, as well as the family problems, or a poor school or work environment may also create similar behaviors.

Basic symptoms of ADHD include: Making careless mistakes, failing to pay attention and keep on task, not listening, talking excessively and fidgeting. Symptoms are rated as to how often they occur and whether they create impairment in at least two areas – social, school, in the workplace or at home. (1) Many of these symptoms are common is other disorders as well, which means patients may be incorrectly labeled as having ADHD, or just as often, that ADHD will be missed. In general practice, therefore,  ADHD is both over-diagnosed and under-diagnosed.

Physical disorders that may be confused with ADHD include thyroid problems, poor hearing, celiac disease, sleeping disorders or even food allergies. (2) (3) Other psychiatric disorders may be “comorbid” with ADHD or a different disorder altogether. They may be missed at first glance as they may not surface until later in a child’s development, in adolescence or adulthood. The most common comorbidities include Learning Disabilities, Oppositional Defiant Disorder, anxiety, and depression. (4) Aspergers Syndrome, now categorized as high functioning autism, or bipolar disorder are also something to be considered. (5)

Due to the serious nature of ADHD deficits, finding the best treatment at the price you can afford is important.  Just how much you need to stretch your budget is a personal matter and should be based on the severity of symptoms of ADHD and their negative impact. (See: How much does it cost to test for ADHD? from Consumer Reports) If finances are a concern, please see ADHD Treatment: Money Matters.

For practical reasons, diagnosis and treatment is often left to Family Practice doctors or general pediatricians. An exploration of two opposing viewpoints on the struggle to receive appropriate treatment highlight the dichotomy between an ideal situation and the care you are able to find. One is a personal opinion of a Psychiatric Nurse Practitioner with many years of experience assessing ADHD while the other comes from an article on improving care for ADHD in primary care practices.

“AD/HD is real. It is neurological/biochemical in origin and is NOT a behavioral disorder or an excuse for failure. It is a disorder that requires that every aspect of the person’s life be explored because AD/HD affects ALL aspects of life and is almost always associated with other disorders.

Because of its complexity, ADHD is NOT a disorder that can, or should, be diagnosed in a busy family or pediatric practice. It requires extensive history taking, a lot of time, and knowing the subtleties of the disorder. Treatment requires first and foremost a COMPLETE diagnosis of all comorbid conditions.

Preliminary treatment will usually include the use of medications in proper sequencing for the best symptom coverage for all presenting conditions. In addition, self-care needs, such as a healthy diet, moderate exercise, and making sure of adequate sleep should receive attention.  Further treatment will likely include psychological counseling; school and workplace accommodations; peer interaction and social skills training as well as coaching to develop time management and organizational skills.”

Adapted from the words of Ted Ritter, ARNP, CAPMHNP, board certified as both a Family Nurse Practitioner and as a Psychiatric-Mental Health Nurse Practitioner. (Harvested 9/20/2010 Northwest ADHD and Behavioral Clinic)

 

On the other hand….

“Attention-Deficit/Hyperactivity Disorder (ADHD) has a prevalence rate of 8.6 percent among children, which translates into approximately five million children in the United States who require ADHD-related mental health services (Froehlich et al., 2007).

ADHD, as one of the most prevalent pediatric chronic conditions in childhood, is certainly a part of daily practice for virtually every pediatric provider.

The mental health system and specialty mental health providers in the United States do not have the capacity to accommodate this number of children. As a result, the majority of children with ADHD receive diagnosis and treatment services from their primary care physicians….”

Jeff N. Epstein, Ph.D., and Joshua M. Langberg, Ph.D

Source: Improving ADHD Care with Community-based Interventions in Primary Care From National Alliance on Mental Illness – www.nami.org – Harvested 9-20-2010

A 2015 research study reviewed by David Rabiner, Ph.D, points out the failings of “community care.”

  • Guidelines from the American Academy of Pediatrics on the evaluation and treatment of ADHD are frequently not followed.
  • The careful monitoring of medication often does not happen to the degree that it should.
  • The commonly co-existing conditions are routinely not identified. (6)

 

Vigilance and patience are needed to ensure the best care. Whoever your provider, specialist or not, keep a journal to track responses to medication and any behavioral intervention. You can use any of these ADHD Screening Tools. Try documenting any behavior that seems different from others at that age. If ADHD alone doesn’t account for all the symptoms you see, look for the ADDitude Mag.com series, “Is it ADHD or is it…? — Possible disorders include Anxiety, Learning Disabilities, Bipolar Disorder, Sensory Processing Disorder and more. (7) (Look below the footnotes for a few statistics from a large 2011 study- Survey)

Consult a specialist if traditional treatment isn’t working, or if you suspect your child has a complex form of ADHD,” says Brock Eide, M.D., “Your pediatrician or family doctor may not be up-to-date on the latest and greatest cutting-edge diagnostic and treatment approaches.” (8) Specialists will vary according to your concerns. For instance, with anxiety, depression or bipolar disorder, see a psychiatrist. For Tic or Autism Spectrum disorders, see a neurologist.  Assessing learning disabilities is a job for any number of specialists, including psychologists. (9) See Find ADHD Treatment and Support to find a provider near you.  Early detection offers the best prognosis, but remember, all disorders don’t present at the same age. And, as children move into adulthood, it cannot be assumed that an individual will grow out of the disorder. Studies have shown that 30 to 65% will continue to have problems. (10, 11.12)

Expect results from getting treatment, but not immediate changes. As Rae Jacobson writes, “Getting diagnosed wasn’t a cure, it was a key” that opened a gate to getting treatment, implementing appropriate strategies, and accepting that ADHD is not a character flaw.” (13) ADHD is a chronic condition that can be managed with medication, routines and structure and other personalized techniques. It may require some exploration to find the right type of medication and to find the right dosage, a process called titration. It will also take time to change behavior rooted in biology, regulate emotions and support weak executive functions.

Here’s where cultivating patience comes in. Your job is to do the best with what you have to work with today. Structure and routine help automate everyday actions, lead to greater productivity as well as build self-esteem and awareness. Progress inspires a change in attitude as well as lessening the unfortunate shame and doubt in one’s abilities that so often accompany the disorder.

Don’t just address deficits. Work to identify areas of strength, or “islands of competence,” and create a toolkit of strategies with different ways to get around problem areas more naturally. (14)  Parents, advocate for your children to get the help they need.  Both children and adults with ADHD must learn to speak up for themselves. It’s empowering and can be life-changing.  Don’t try to hurry the process. Treating ADHD is not a sprint, it’s a journey of a thousand steps. One step at a time is enough.

“Photo courtesy of Luigi/FreeDigitalPhoto.net” Modified on Canva.com

 

References:

(1) Types of ADHD: Making the Diagnosis http://www.webmd.com/add-adhd/childhood-adhd/types-of-adhd – Web MD – Harvested 10-20-2014 – Alternate source: Recognizing the Types of ADHD – http://www.everydayhealth.com/adhd/recognizing-the-types-of-adhd.aspx Everyday Health – Harvested 7-2-2015

(2) Meta-Analysis of Attention-Deficit/Hyperactivity Disorder or Attention-Deficit/Hyperactivity Disorder Symptoms Joel T. Nigg, Ph.D., Kara Lewis, Ph.D., Tracy Edinger, N.D., Michael Falk, Ph.D. – Journal of the American Academy of Child & Adolescent Psychiatry. Volume 51, Issue 1, Pages 86-97 .e8, January 2012.- Harvested 10/20/2014 – Link works –  http//www.jaacap.com/article/S0890-8567(11)00953-1/abstract

(3) Attention deficit hyperactivity disorder in children and adolescents: Clinical features and evaluation by Kevin R Krull, PhD – http://www.uptodate.com/contents/attention-deficit-hyperactivity-disorder-in-children-and-adolescents-clinical-features-and-evaluation :Up to Date – last reviewed 9/14/2014 – Harvested 10/21/2014

(4) Patterns of Comorbidity, Functioning, and Service Use for US Children With ADHD, 2007, Kandyce Larson, PhDa, Shirley A. Russ, MD, Robert S. Kahn, MD, MPHc, Neal Halfon, MD, MPH
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065146/ – Harvested 10/17/2014

(5) ADHD and Differential Diagnosis: Comorbidity and Prognosis by Leslie E. Packer, PhD –
http://www.tourettesyndrome.net/disorders/attention-deficit-hyperactivity-disorder/adhd-differential-diagnoses-comorbidity-and-prognosis/ – Harvested 10/17/2014

(6) Study Finds Poor Treatment for Children with ADHD by Gina Pera – http://adhdrollercoaster.org/adhd-news-and-research/study-finds-poor-treatment-for-children-with-adhd/ – Harvested 3/19/2015

(7) ADHD and Comorbidities – AdditudeMag.com Keyword Search – Harvested 6-16-2017 Link works https://www.additudemag.com/search/keyword/Comorbid%20Conditions%20with%20ADD.html

(8) How to Diagnose ADHD in Children Accurately and Efficiently – ADDitudeMag.com – Harvested 4-12-2017 – Link works –  https://www.additudemag.com/how-to-diagnose-adhd-in-children-accurately-and-efficiently/

(9) Learning Disabilities and Disorders.  Good introduction to LDs on HelpGuide.org – Harvested 6-17-2017 – Link works – https://www.helpguide.org/articles/autism-learning-disabilities/helping-children-with-learning-disabilities.htm

(10) Not Just for Kids by Ronnie Rochman  – Time – ADHD Often Continues into Adulthood  Harvested 3-6-2016 http://healthland.time.com/2013/03/04/why-adhd-is-not-just-a-problem-for-kids/ “In the largest study of its kind, researchers at Boston Children’s Hospital and Mayo Clinic found that close to a third of children with ADHD — 29.3% — still have the disorder as adults, along with an increased rate of other psychiatric problems.”

(11) ADHD Can Persist into Adulthood with Serious Consequences by Rick Nauert, Ph.D. – Harvested 9-7-2015 – http://psychcentral.com/news/2013/03/05/adhd-can-persist-into-adulthood-with-serious-consequences/52237.html

(12) Can Children Recover from ADHD by Adulthood? Russell Barkley’s Facebook page March 1 at 8:57am – Harvested March 4, 2016 “Follow-up studies published over the past decade, which are more rigorous than those done 20-40 years ago, indicate that up to 35% of children may no longer qualify for the diagnosis of the disorder or be impaired from it in any major life activities.

(13) What it’s Like to have ADHD as a Grown Woman by Rae Jacobson – Harvested 9-7-2015 – http://nymag.com/thecut/2015/08/what-its-like-to-have-adhd-as-a-grown-woman.html (Copy and paste URL)

(14) The Search for Islands of Competence: A Metaphor of Hope and Strength by Robert Brooks, Ph.D.
Harvested 2-28-2015 – http://www.drrobertbrooks.com/pdf/0506.pdf

The survey published by National Survey of Children Health, which involved over 60,000 children ages 6-17 years including over 5,000 with ADHD, showed that psychiatric and physical comorbidities were very common in children with ADHD. (Larson 2011) Overall, 67% of ADHD children had at least one other mental health or neurodevelopmental disorder compared to 11% of children without ADHD. 33% had one comorbidity disorder, 16% had two, and 18% had three or more. ADHD was associated with elevated prevalence of the following (Phend): 1. Learning disorders (46% vs 5%) 2. Conduct disorder (27% vs 2%) 3. Anxiety (18% vs 2%) 4. Depression (14% vs 1%) 5. Speech problems 12% vs3%) 6. Autism Spectrum Disorder (6% vs0.6%) 7. Epilepsy/Seizures (2.6% vs0.6%)

ADHD and Comorbidity by Mintin Patel, Mita Patel and Harsha Patel – Harvested 9-7-2015 – Copy and paste – http://cdn.intechopen.com/pdfs-wm/28240.pdf

 

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