Learning and Behavior Series Part 2: Who's who in learning and behavior testing

This is part 2 in a series of posts on Learning and Behavior issues.

Parents are sometimes surprised to learn that I treat ADHD, anxiety, and some other behavioral disorders. There are some pediatricians who don't, but I find there is a huge need, and I feel that in many cases since I've followed a child for years, I know them well and can help better than a specialist who will only see them a few times. That being said, I do use specialists often. Of course the professionals at school are imperative to being part of the team. And there are times when the diagnosis isn't clear, or a child doesn't respond to the treatment well and other healthcare specialists are very helpful to assess the issues.

Many different professionals typically work together to help assess learning and behavioral concerns, each using his area of expertise to contribute to the whole picture. There are no specific laboratory or imaging tests available to determine a diagnosis on a routine basis. This can make it a little tricky if the symptoms are not clear cut. Many learning and behavior problems have similar symptoms, so it might take several professionals to help evaluate the situation. We often base our diagnosis on the symptoms parents and teachers (and older children) report and by ruling out other disorders. There are standardized questionnaires or tests for various conditions that have been validated. Each condition has specific treatments that have been shown to benefit the condition. There are also tests available, such as EEG for ADHD, that are not shown to be beneficial and can increase cost without adding to the diagnostic evaluation. There are of course many tests and treatments available that have not been proven to help. If it sounds too good to be true, it probably is. Discuss tests you are considering with your child's doctor first, especially if there is a large price tag attached.

The evaluation includes several types of assessments because there are many things that can cause learning or behavioral issues. Contributing issues include but are not limited to: ADHD, anemia, anxiety, bullying or abuse, chronic illness, depression, hearing or vision problems, learning disabilities, malnutrition, oppositional defiant disorder, sensory integration disorder, and sleep deprivation.

A big part of the diagnosis lays in the symptoms noted at home and school, so there are a lot of questions about how your child fares at each. Both parents and teachers and any other significant adults should fill out standardized questionnaires as recommended by the clinician doing the evaluation for many behavioral issues. It is important to answer each question as honestly as possible to avoid misrepresentation of symptoms, which can lead to an improper diagnosis. It is also important to review the family history, since many of these issues run in families. A physical exam should be done to help identify any physical symptoms that can contribute to learning or behavioral problems. This should include hearing and vision assessments by appropriate professionals. Some clinicians may go to your child's classroom to observe behaviors. Psychological and IQ testing might be performed, depending on the symptoms.

So where does everyone fit into the diagnosis and treatment of kids with behavioral or learning issues?

• Parents (or primary caregivers) are critical to giving insight into how children learn and behave. They should be interviewed and fill out standardized questionnaires to help with the diagnosis and then their feedback on how each treatment is working is helpful in fine tuning treatment plans.
• Teachers are imperative in helping assess the issues and concerns since they can compare any one child to a room of their peers and they know how your child handles various situations and what their typical behaviors are. Teachers with advanced background in learning disabilities are used to help address specific concerns. It is recommended that each teacher fill out standardized questionnaires to help with the initial evaluation of focus and behavior disorders and again to assess responses to treatments. Schools may put students on IEP or 504 Plans to help with their education. For more on these see IEP & 504 Plan. 
• Physical Therapists, Occupational Therapists, Audiologists, and Speech Therapists can be school based or private, but they are helpful in addressing specific motor skills, sensory issues, hearing issues, or speech/language concerns. They do not prescribe medication, but work within their area to improve certain skills that affect learning and behavior.
• Psychologists (clinical psychologists, cognitive psychologists, educational psychologists and neuropsychologists) and clinical social workers offer testing as well as therapy for many disorders. They can do parent training to help parents manage behaviors at home. They cannot prescribe medications, but many people find that the therapy provides enough benefit that medication is not needed or that the therapy in addition to medicine helps better than either treatment alone. Cognitive behavioral therapy is the preferred first line treatment for certain disorders, such as ADHD in a young child or anxiety. These therapists also often provide social skills training, which is needed for many children with behavioral and learning issues who don't learn social skills as easily as their peers. You should check your insurance list of providers to see who is covered. It also might be worth pricing some who do not take your insurance but will give you a bill to submit yourself. It may be that even if a person is out of network your cost is about the same as a person who is harder to get in to see but on your plan.

• Physicians (pediatrician, family physician, developmental pediatrician, neurologist, and psychiatrist) can prescribe medications for treatment of certain diagnoses, such as ADHD or anxiety. Not all have experience with each of these issues so you must ask what their experience is. It can take quite awhile to get into specialists and they can be expensive, so starting with your primary physician often is easier and very helpful to rule out medical issues and to do the evaluation and treatment if they are comfortable. Many psychiatrists do not accept insurance and they are typically difficult to get in to see. Physicians (including psychiatrists) generally do not do therapy. They focus on the medication benefits and side effects.
• Nurse practitioners and physician assistants can work with physicians (and independently in some states) to diagnose disorders and prescribe medications to treat them. They do not offer psychotherapy. Benefits include that they are generally easier to get in to see and they are relatively inexpensive compared to physicians. Not all are comfortable with treating these issues.

The types of professionals who work with any given child to assist in diagnosis and treatment vary depending on the issues at hand, but the most important thing is that they work as a team and communicate with one another. This communication is often done through parents and written reports, but it is important that all members of the team have access to what the others are doing. 

Resources available:

• Finding More Help is a list of online resources as well as local professionals.
• CHADD is a national organization to support those with ADHD. Membership includes vast resources for learning more about ADHD.
• ADHDKC is a local chapter of CHADD and offers free parent meetings with great speakers on a variety of topics related to ADHD.
• Learning Disabilities Association of Kansas (LDAK) is a volunteer organization whose purpose is to advance the education and general well-being of children and adults with learning disabilities.
  
  

  More Quest for Health blogs on ADHD:

  • Why get diagnosed?
  • Who's Who in ADHD Treatment
  • Nutrition, Elimination Diets, and Vitamins
  • Alternative Treatments
  • Medications
  • Generic Methylphenidate HCl ER (for Concerta)
  • Red Dye #40 and Hyperactivity
  • Homework Battle Plan
  
  

Learning and Behavior Series Part 1: Labels - Why should my child be diagnosed?

This is the first in a series of posts about learning and behavior I will do over the next several months.

I see a lot of children with various behavioral and learning issues. Teachers and parents often first think of ADHD with any problem, but that isn't always the problem, or at least the primary one. It is simply one of the most common diagnoses. Since it is so common, I will focus on this topic often, but it can mimic other problems and it often co-exists with other issues.

I firmly believe that kids with learning and behavioral problems cannot just "work harder" to fix the problem. When I am sleep deprived, I cannot focus as well. I cannot read and comprehend what would typically be easily understood and retained. I lose track of things. I lose my temper more easily or get upset about the little things that usually wouldn't phase me. I must put extra effort into everything, which is even more exhausting. I liken this to how some people feel most of the time. How can we possibly expect them to just try harder without professional assessment and treatment?

One reason parents don't want to have their child diagnosed with ADHD or any other learning or behavioral problem is that they fear a label. What is a label? It is not a diagnosis, but the way we are perceived. Think about how many judgements and labels you make in a day. I try really hard to not judge because it's not my place, but those thoughts sneak into my mind all the time:

That person is rude. 

That's my shy (hyper, loud, smart, active, loving, etc) child.

That was a dumb statement. 

That group of giggling girls is too loud and out of control. 

I don't say anything with these thoughts most of the time because it's usually not my place. I often mentally rebuke myself for having them, but I still have opinions. The truth is that we all make judgements all the time. And when a child acts out a lot, he is judged and labeled. If a child never seems to be organized, she is judged and labeled. If a child falls behind academically, he is judged and labeled. It happens with or without a diagnosis. The label is there.

Wouldn't it be better to get a professional's evaluation and treatment? With proper management, your child might lose the negative labels and be able to succeed!

One of the problems with diagnosing many learning and behavioral disorders is they are difficult to test for since there is a continuum of symptoms of normal and atypical and there are so many variables (such as sleep) that can affect both learning and behavior. Even though ADHD is common, studies vary and disagree as to exactly how common it really is. Some experts think people are under diagnosed. Others claim too many are over diagnosed. The same goes for treatment: too few kids are medicated or too many kids are medicated. I think that all stems from the fact that the symptoms of ADHD are common to any neurotypical person, just to a larger degree, and symptoms often overlap with other disorders -- making a correct diagnosis difficult. There are still many people who think behaviors and focus problems are due to bad parenting. If it is a parenting issue alone, how would a medicine help? Probably in part due to this stigma, parents worry about how the diagnosis will reflect on the child and family more than any other diagnosis I know. If a child has an infectious disease or  a chronic condition such as asthma, there is much less hesitation to assess, diagnose, and treat the illness.

There are many reasons for parents to be hesitant to begin an evaluation when their kids are showing signs of a learning or behavioral problem. Some think it's just a phase. Many wonder if another few months of maturity will help the child. Some think the child is just misbehaving, and stricter rules or harsher punishments will help. Others think the child is just looking for attention and giving more praise will help. Some parents think it is because of the other children around -- you know, "Little Johnny is always messing around in class so my Angel Baby gets in trouble talking to him."

While I am all for looking for things on your own that can help a child's behavior and optimize their learning, I also think that avoiding the issue too long can lead to secondary problems: academic failures, poor self esteem, depression, drug/alcohol abuse, and more. Working with the school and seeking professional help outside of school can help your child succeed. If a parent is not wanting to start medication, there are other things that can be done that might help the child succeed once the specific issues are identified.

Why wouldn't you want to start a treatment that works? Asking a child with ADHD to just focus harder is like asking someone with nearsightedness to just focus harder. Without the help of glasses a person with nearsightedness can't see well. Without a medicine to help, some people just can't focus. If a child needs glasses to focus parents rarely say they'll just make the child try harder. They get glasses for the child. Without the glasses a child may have more injuries from not being able to see. He might have physical symptoms, such as headaches, from the eye strain. His grades might fall because he can't see the board. People see the vision issue as a medical one, yet when a brain has trouble with neurotransmitters causing focus problems, they often resist the medical treatment. Untreated ADHD also has consequences. The children suffer from poor self esteem because they constantly are reminded that their behavior is bad. They have a harder time doing tasks at school because they lose focus. They get distracted and miss important information. Children get in trouble for talking inappropriately, acting out or for invading other's personal space. They lag behind peers with social skills and often have a hard time interpreting how others react to their behaviors. Their impulsivity can get them into dangerous situations, causing more injuries. Older kids might suffer from depression and anxiety from years of "failures".

If you still worry about labeling your child with a diagnosis, think about what the root of your worry really is. Remember that the diagnosis is only a word. It doesn't define the best treatments for your child, but it opens the doors to allow investigation of treatments that might help your child. In the end most parents want healthy, happy kids who will become productive members of society. How can you best help them get there?

Many parents benefit from support groups to learn from others who have gone through or are currently going through similar situations, fears, failures, and successes. Find one in your area that might help you go through the process with others who share your concerns. If you know of a support group that deserves mention, please share!

• ADHD: CHADD is the nationwide support group that offers a lot online and has many local chapters, such as ADHDKC. I am on the board of ADHDKC and have been impressed with the impact they have made in our community in the short time they have existed (established in 2012). I encourage parents to attend their free informational meetings. The speakers have all been fantastic and there are many more great topics coming up!
• Anxiety: Many parents are surprised to learn how much anxiety can affect behavior and learning. The Kansas City Center for Anxiety Treatment has support groups for their current and former patients.  

• Autism: The Autism Society has a list of resources 
• Dyslexia: Dyslexia Support Group for youth with dyslexia

• Learning Disabilities: Learning Disabilities Association of Kansas
• Tourette's Syndromr and Tic Disorders: Tourette's Syndrome Association is a great resource for people with tic disorders. They have an active local chapter.
• General Support Group List: List of many support groups in Kansas: Support Groups in Kansas  (I found the search function to work best with the bottom option.)

I'll be writing a lot on this general topic over the next few months, so let me know if there are any specifics you'd like addressed!

More Quest for Health blogs on ADHD:

• Why get diagnosed?
• Who's Who in ADHD Treatment
• Nutrition, Elimination Diets, and Vitamins
• Alternative Treatments
• Medications
• Generic Methylphenidate HCl ER (for Concerta)
• Red Dye #40 and Hyperactivity
• Homework Battle Plan

Ticks!

We are getting a ton of phone calls every day because kids have had ticks and parents are worried, so I thought I'd run through the most important things: prevention of ticks, tick removal, and diseases from ticks.

Prevention is of utmost importance in most things, and tick bites are no different. If you are going to be in an area that is likely to have ticks (trees and tall grass), wear boots or tuck pants into socks, long sleeves, long pants, and hats. Use repellents that contain 20 - 30% DEET on exposed skin and clothing for protection that lasts up to several hours. Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth. You can use products that contain permethrin on clothing - ones that come pre-treated may be protective longer. Treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5% permethrin, following package directions. For more information on insect repellants and how to choose the best for your situation, visit this EPA page.

If you have been in areas where ticks are likely, check for ticks daily. If ticks are removed within 24 hours there is less chance of disease transmission. Pay careful attention to the head and ears, under arms, around the waist and between the legs, and in the belly button. (Don't forget to check your pets and any gear you might bring inside!) Bathe as soon as possible after coming inside. Tumble clothes in a dryer on high heat for an hour to kill remaining ticks. (Some research suggests that shorter drying times may also be effective, particularly if the clothing is not wet.)

If you find a tick, proper removal is important. I've heard wild stories about drowning ticks or burning them off. These things are dangerous- the chemicals or heat can burn your skin and could cause the tick to regurgitate back into the skin, increasing risk of disease transmission. The best method is to use a pair of thin-tipped tweezers to grab the tick as close as possible to the skin (not the belly of the tick!) and pull firmly but gently. 

photo source: Shutterstock

There are many tick - borne diseases, but only a few in our area. For a listing by geographic area, see this CDC page. The most common symptoms of diseases caused by ticks:

Body/muscle aches
Fever
Headaches
Fatigue
Joint pain
Rash
Stiff neck
Facial paralysis

Rashes are often characteristic of the disease and are used in the diagnosis. Many of these diseases don't rely on lab testing, but rather the risk of exposure and the symptoms. Most have treatments available, but every tick bite should not be treated to "prevent" because that would expose people to unnecessary antibiotics most of the time. To see the target rash typical of Lyme, Rocky Mountain Spotted Fever, tularemia, and more, visit this CDC page. 

Ticks in the Midwest carry these diseases:

• Rocky Mountain Spotted Fever (RMSF): Symptoms include fever, headache, abdominal pain, vomiting, and muscle pain. A rash may also develop after a few days, but not in all people. RMSF can be a severe or even fatal illness if not treated in the first few days of symptoms. Doxycycline is the treatment of choice for adults and children of all ages, and is most effective if started before the fifth day of symptoms. Treatment should be started based on clinical diagnosis before the disease is confirmed by lab testing.

• Tularemia: People can be infected with tularemia from contact with infected rabbits, hares, and rodents, tick and deer fly bites, ingestion of contaminated water, or inhalation of contaminated dusts. Symptoms vary depending upon the route of infection. 

• Ulceroglandular or Glandular: This form comes from a tick or deer fly bite or after handing of an infected animal. A skin ulcer appears at the site where the organism entered the body in the ulceroglandular form. In both forms lymph nodes (glands) swell in the area of the exposure.  

• Oculoglandular This form occurs when the bacteria enter through the eye. This can occur when a person is butchering an infected animal and touches his or her eyes. Symptoms include irritation and inflammation of eye and swelling of lymph glands in front of the ear.
• Oropharyngeal This form results from eating or drinking contaminated food or water. People with orophyangeal tularemia may have sore throat, mouth ulcers, tonsillitis, and swelling of lymph glands in the neck.
• Pneumonic This is the most serious form of tularemia and comes from inhaling contaminated air particles or if another form is untreated and spreads to the lungs. Symptoms include cough, chest pain, and difficulty breathing.

• Heartland Virus: As a newly discovered virus, there are still a lot of unknowns, but it seems to be carried by ticks in Missouri and Tennessee. Symptoms include fever, extreme fatigue, headaches, muscle aches, diarrhea, loss of appetite, and upset stomach. There is no lab test for it yet. There is no known treatment, but most people recover.

Lyme disease is probably the most well known but most misunderstood tick disease. Ticks in our area don't commonly have Lyme disease, but it is the most commonly found tick-borne disease in the US. Symptoms vary based on time:

• Early localized phase (3-30 days after bite): A target shaped rash in the area of the bite develops in about 70% of people with Lyme disease. A red mark at the site of the bite is normal, not a sign of infection, but if the area grows and looks like a bullseye, that is the erythema migrans rash that can be associated with Lyme disease. People might also have fever, chills, fatigue, headache, muscle and joint aches, and swollen lymph nodes.
• Early disseminated phase (days to weeks after bite): The rash can spread to other parts of the body. A facial paralysis can occur. Severe headache, stiff neck, joint swelling and pain, dizziness, and heart flutters can occur. Most of these symptoms will eventually resolve without treatment, but further complications can develop.
• Late disseminated phase (months to years after bite): Arthritis, numbness and tingling of hands and feet, pains, and short term memory problems may develop without treatment in earlier stages.
• Lingering symptoms after treatment: About 10-20% of people will have symptoms months to years after treatment despite treatment. These include muscle and joint pains, sleep problems, fatigue, and cognitive problems. It is thought that this is an autoimmune problem resulting from the infection, and antibiotics do not help (and might worsen) symptoms at this point.
• For more on Lyme disease please visit the CDC's comprehensive Lyme pages.