Dyslexia red flags. Psychoeducational assessments. Stimulant medications.
Welcome to the first installment of the year! Thanks for reading and feel free to ask questions or provide comments below.
#1 Red Flags for Dyslexia
Now that we are in the dog days of the academic school year (and what an extraordinary year it has been), I thought it would be a good time to discuss a common referral question to DBP: Does this child have dyslexia? Learning struggles or academic failures are common concerns families bring to the primary care office. A language-based processing disorder like dyslexia represents the most common type of learning disability, about 80%. Many conditions may be contributing to why a school-age child is not meeting grade-level expectations with reading, writing, or spelling. Children with coexisting medical conditions (e.g., ADHD, seizure disorder, asthma, preterm birth), a family history of poor academic achievement, and low socioeconomic status are at much greater risk for dyslexia than the general population.
While a formal assessment for dyslexia is a lengthy, often arduous process (see #2), there is a lot you can do to screen and assess risk in a short encounter. You have the opportunity to identify learning problems in children early on, advocate for them, guide families, and help educational professionals appreciate children in the context of medical, social, and cultural factors.
The history alone may provide you, as a primary care provider, several red flags for dyslexia. Parents may raise concerns about language or speech delay in early childhood. They may tell you that their child does not have an interest in books, learning letters or numbers, or recognizing their name. In preschool and kindergarten, they may have a harder time writing when compared to peers. Children with dyslexia have trouble with phonetics (the sounds related to words and letters). This may manifest early on as having difficulty with nursery rhymes, an inability to associate letters with sounds, consistently mispronouncing words, or persistent baby talk.
Challenges with language processing become even more obvious and pronounced in grade school. Now with the expectation to read, these children fall further behind relative to their classmates. Parents will tell you that the activity of reading is frustrating for their child. And in older children, they really show signs of avoiding reading, having meltdowns around the activity, complaining that it is too boring or hard. Parents may tell you that they prefer books with pictures (comics, graphic novels) instead of chapter books. The difficulty with reading may affect other activities, especially in middle childhood and adolescence, where the expectation is to “read to learn”. While we have yet to have a universal definition of dyslexia (at least in the technical sense), what is agreed upon is that the child has failed to learn how to read despite having adequate opportunities to learn at home and school.
All of this history can be reasonably gathered within 5-10 minutes if you know the right questions to ask. I always like to get input from the child if I can. Here are a couple of helpful questions to consider:
“What is the hardest thing about reading?"
"Is it hard to sound out words?"
"Do you forget what you read at the beginning of a paragraph when you reach the end of the paragraph?"
“Do you understand what you read?"
You may want to have the child do an activity or two while in the office to narrow your level of suspicion for dyslexia. You can have a few short passages at hand for the child to read out loud to you. While there are fancy standardized batteries to assess children's reading levels, you do not need them to be suspicious for dyslexia. It would be self-evident if you allow yourself to hear a child with dyslexia read. It is painfully slow. They make frequent errors in pronunciation words, sometimes replacing words with their own or skipping them entirely.
Here are rough guidelines for reading milestones in children:
Letter or letter group: kindergarten
The word: 1st grade
Word clusters/phrases: 2nd grade
Sentence/comprehension: 3rd grade
The paragraph/fluency: 4th grade
Understood.org has a nice one-page document of dyslexia signs at different ages that you can download and keep handy in your office.
#2 The Psychoeducational Assessment
I get a lot of referrals from primary care for “learning disability testing”. Contrary to popular belief, most developmental-behavioral pediatricians do not do testing for learning disabilities. We can help rule out coexisting conditions like ADHD, autism spectrum, or anxiety disorder. Still, a comprehensive evaluation by a clinical or educational psychologist is needed to make an official diagnosis of dyslexia or any learning disability. The reason is that cognitive (i.e., IQ) and academic achievement testing using standardized batteries are needed. These assessments fall within the scope of practice for a clinical/educational psychologist. Here’s the kicker: all public school districts have a psychoeducational team trained to do these assessments (commonly known as comprehensive multidisciplinary evaluations). They may tell families they do not make LD diagnoses (citing it is a medical diagnosis). Still, more often than not, they use the same batteries a private psychologist would use to make an LD diagnosis.
That is generally my first tip to families: go with the school district first for an assessment because it is needed to qualify for services or resources for the child via an Individualized Educational Program (IEP). There is always a chance the child does not qualify, but I always tell parents that is for the school to determine. It is not their decision to determine which children do or do not get an evaluation under IDEA. Although every child is entitled to a free and appropriate education (FAPE), this does not guarantee the school district will do formal testing. Parents often ask if they should go with a private psychologist instead. While a private psychologist does comprehensive evaluations, this does not usually replace what the school district does. In other words, a school district is not obligated to offer a child an IEP even if a private psychologist insists on one. Private evaluations are expensive (several thousand dollars) and time consuming. There certainly is a role for private evaluations, such as for an IEE. Some families just want to know if their child has a diagnosis and are not interested in dealing with the public school system's bureaucracy. Maybe the child is in a private school in which a school district assessment is less useful (though all children can get evaluated by their local school district as part of IDEA).
Many families also are confused about the differences between a psychoeducational, psychological, and neuropsychological evaluation. There are distinct differences as understood.org describes:
Psychological evaluation: Focuses on a child’s emotions, behavior, and social skills.
Psychoeducational evaluation: Focuses on a child’s classroom and education needs. It involves basic cognitive testing in areas like IQ and learning differences, with a look at academic performance, too.
Cognitive testing: Focuses on how a child thinks. It may use a variety of tests for IQ and learning differences.
Educational evaluation: Focuses on academics—how a child performs in school-related skills, based on age or grade.
Neuropsychological evaluation: Focuses on how a child’s brain functions, and how that impacts behavior and learning. It involves a wide range of cognitive testing on learning differences, plus behavioral testing and a look at academics. It may go deeper than a psychoeducational evaluation.
The reality is that there is often overlap between the three. If a family is interested in ruling out LD in their child, they need to make sure both cognitive and academic achievement testing is done.
#3 Stimulants: Methylphenidate vs. Amphetamine
While psychostimulants are first-line agents for the pharmacological management of ADHD, I invariably get questions from parents and primary care physicians about which drug to start first. The easy answer: It's up to you. Pick one you are comfortable prescribing, whether it is a methylphenidate- or amphetamine-based stimulant. Grade school-aged children usually benefit from an extended-release drug (one that lasts at least 8 hours). Depending on how fast the child metabolizes the medication, some may need a short-acting dose (4-6 hours) in the mid-afternoon to carry them through the evening. Children with a lot of impairing hyperactive/impulsive behaviors can benefit from the addition of an alpha agonist, a common adjunct with stimulants. We'll talk more about its role (and other non-stimulants) in a future newsletter.
A common problem I see with children who do not respond therapeutically to stimulants is that the prescribing clinician only tried several medications in the same subclass (i.e., methylphenidate or amphetamine). If a child has side effects from one subclass, it will not change whether the child is on a long-acting or short-acting, liquid, or capsule version. Don't hesitate to try the other subclass. Research informs us that about 70% of children with ADHD will respond therapeutically to either methylphenidate or amphetamine. That is a huge efficacy rate! There's probably a genetic explanation to this. One day a test will inform us which stimulant the child is likely to respond to best (psychopharmacogenetic testing is available but not considered highly reliable for ADHD medications yet).
The bottom line: Make sure you exhaust both subtypes of psychostimulants before moving on to second or third-line agents.
Other pearls to consider:
"Start low and go slow, but not too slow" You do not need to wait greater than a month to increase the dose. You can increase every 3-5 days until the maximum benefit with tolerable side effects is achieved. I typically instruct families to go up the same day every week because it makes it easy for them to remember.
"Give 2-3 days for the child's body to adjust to the medication". Some side effects, such as headaches and stomachaches, result from the body getting used to the medication and usually disappear after a few days. Even appetite suppression and delayed sleep onset, common side effects from stimulants, can improve with time. They are likely true adverse effects if these symptoms persist longer. Then consider going down on the dose, switching to another stimulant subclass, or trying a second-line drug (e.g., atomoxetine).
"Start on the weekend so the parent gets to be the first to see how the medication works on the child”. School breaks and remote learning (one silver lining of the pandemic) are also good times to start medication. The bottom line is that the adult who knows the child best should be the first to see how this medication works. This typically is a parent and not the teacher, daycare provider, or soccer coach. This approach is family-centered and improves treatment adherence.
Cincinnati Children's has a fantastic decision aid resource for clinicians and families. Highly recommend printing some out in your office to share or use during your discussion about medication with families.
A 9-year old boy with dyslexia. Noticed how he reversed the word “Giants” on the child’s shirt.