How had it come to this for Madisyn Metaxas?

Tracy Jensen often thinks about her son, Ethan. He was someone with an amazing aptitude for learning. “He was a boy who had eyes to notice others who, like him, were in pain and suffered silently, Tracy said. “He was a boy who had the heart to care.”

Ethan never stopped caring about life. It was just the pain became too frequent and too painful for him. Ethan suffered from muscle pain in his back and right leg. At 5 months old he had a fatty tumor removed from his spine. His spinal cord was unable to be untethered and the scar tissue that remained was also troublesome.

Tracy and her husband, Eric, wonder when their son’s suffering began. Was it before his birth? Was it at 5 months old when he had the surgery? Was it later as scar tissue tangled the cord?

As they became aware of their son’s pain, they tried to help but they weren’t sure how, other than with over-the-counter medications, massage therapies and hugs.

Ethan didn’t really know how to help his pain and neither did most adults in his life. When he asked for medication or begged to lie down or go home, his requests were typically met with scoldings for him at school. Most didn’t understand how such a usually active child could truly be suffering.

Over time, Ethan learned to mask his pain.

“A child in chronic pain who is continually misunderstood is going to have emotional struggles such as depression,” Tracy said. “It is not reasonable to expect a child to know how to understand these issues, and my son was no exception. He struggled to process the facts of his life and this caused him to be more and more frustrated.”

Before he entered middle school, Tracy found a book on healing a child’s chronic pain. She continued to research and found that Cook Children’s offered a pain management program. It was there that the family met Artee Gandhi, M.D., medical director of pain management.

“Dr. Gandhi and company were incredibly responsive and devoted to Ethan's needs,” Eric said. “He was enamored with her in particular because she took his interests seriously and treated him as a young man rather than a child. However, Ethan was not always honest with her about the severity of pain he was experiencing. He sometimes believed that the doctors would not believe him or that they would think he was exaggerating his pain level to get medications.”

All through high school and beyond, Ethan studied science online. He taught himself subjects such as organic chemistry, DNA and gene therapy, and pharmacology. He learned how drugs, and different doses, acted and interacted in the body. He thought he understood enough to be safe with whatever he used for pain. He thought he was in control of his pain as he learned to manage it himself. He bought over-the-counter meds and used them off-label. He found ways to obtain prescription pain medication without a prescription.

The pain management team knew Ethan's level of self- education made him a challenge. Dr. Gandhi warned him about self-medicating and the dangers. Unfortunately, like many in their late teens, Ethan believed he was indestructible.

Ethan never stopped coming to clinic, but as time progressed he began to cancel and reschedule appointments more frequently. His parents believe that by mid-2015, Ethan thought surgery was his only chance for relief. The surgeons were able to straighten a significant portion of his lower spine regarding the pain, and as he was tapered off of his pain medication he began to once again self-medicate.

Eventually, drugs, especially opioids, were the only things that made him feel better. It was only slightly better, but that was OK for him, at least for a while. After the realization that his surgery failed to entirely alleviate his pain, Ethan became increasingly afraid of how his pain would continue to impact his life. He was afraid of what others would say, or what they thought of him. He believed no one would understand. He ultimately decided that he would have to treat his pain himself.

According to the Medical Examiner, Ethan died of mixed drug toxicity.

“We are only now looking back and asking ourselves if we could've done much better,” Eric said. “That day, my son was freed from his pain, but our pain would just be beginning.”

About the source

Artee Gandhi, M.D., is a pediatric pain management specialist and anesthesiologist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy. Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

About Pain Management

The Cook Children's Pain Management program uses a team approach in caring for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the United States providing a pediatric pain management program. 

Our team includes a board certified anesthesiologist trained in pain management, a licensed clinical social worker specializing in psychophysiology, a dedicated physical therapist and pain management nurse coordinator.

Because of our team approach, patients will see their physician, physical therapist and psychophysiologist in one visit. 

Patients can make an appointment and physicians may refer a patient by calling our offices at: 682-885-PAIN (7246). New patients, for your convenience, please have your insurance information ready when you call.

Recent studies show that the use of prescription opioids doubled for adolescents, 15 to 19 years of age, between 1994 and 2007. The Centers for Disease Control and Prevention (CDC) reports that nearly 2 million Americans 12 years of age or older either abused or were dependent on opioid painkillers in 2013.

In one study of illicit drug use among teens, opioids accounted for 100 percent of the deaths.

“These are kids that were prescribed opioids for some reason, most of the time for some pain-related condition by dentists, emergency room doctors or primary care physicians,” Dr. Gandhi says. “These kids are going back and taking these medications at a later time. They are using these left overs for non-medical use. We now know that the risk of death from overdose has increased. We also know that the use of opioid prescriptions leads to a higher incidence of anxiety and depression. Interestingly enough, even those kids that are given opioids for a legitimate reason will tend to misuse and abuse drugs.”

The CDC, the U.S. Surgeon General, and President Obama have all taken strong stances on addressing the epidemic of opioid misuse and related deaths.

However, most programs and position statements refer to adults and do not address the issues our children are combatting.

The Pain Management Program at Cook Children’s treats kids with pain ranging from fibromyalgia to migraine headaches to end-of-life patients to kids with life- limiting conditions such as neuromuscular disorders, and pain related diseases such as arthritis, cerebral palsy, etc.

The specially trained physicians at Cook Children’s create a treatment plan that is focused on each particular child and opioids aren’t often the first or only pain medicine used to treat children.

“The danger comes when physicians think the only way they can treat pain is through a narcotic and that’s not the case,” Dr. Gandhi says. We need to know what type of pain the patient is having and take into account the child’s experience of pain. We are all individuals and no two people react the same way."

Dr. Gandhi says that between 15 to 20 percent of the kids seen at her clinic are on chronic opioids, but they are kids that have life-limiting medical conditions or end- of-life conditions.

The other 80 percent of the pain management patients work with physical and occupational therapists and receive therapies such as massage, biofeedback, cognitive behavioral therapy and acupuncture. Music, art and animal assisted therapies are also available for children. They look at all factors that contribute to the pain experience such as diet, nutrition, sleep habits, stress management and coping mechanisms. They create an environment of integrative health where practitioners and patients work together.

“We need to be much more vigilant on how we treat kids’ pain and how we create centers that address that pain,” Dr. Gandhi says. “If you look in Fort Worth or Tarrant County, there are probably 60 adult pain centers in this area, but for kids there are 35 in the entire country. That’s a huge difference. That perspective is crazy.”

About the source

Artee Gandhi, M.D., is a pediatric pain management specialist and anesthesiologist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy. Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

James saw Nickolas with a football. He’d waited a long time to throw and catch a football once again with his dad.

It wasn’t that long ago that Nickolas was in tears from the sharp, stabbing feeling in his abdomen. The nerve block procedure he’d just awoken from did little to ease his pain. Groggy from anesthesia, he didn't know what he was saying to Cook Children's pain management physician, Artee Gandhi, M.D. He only knew that the years he'd spent laying on the couch because it hurt too much to move had to end.

"He kept saying 'please help me, you're all I have Dr. Gandhi, you have to help me,'" said Julie McCanless, Nickolas' mother.

The pain in the upper right quadrant of Nickolas' abdomen began suddenly in 2011, when he was just 10 years old. Though he was an active child who enjoyed playing football, there was no injury or incident the family could point to as the trigger for his pain. His parents began searching for someone who could provide a diagnosis and also relief. Despite seeing physicians in Texas, Oklahoma and even Minnesota, no one could tell the North Richland Hills family what was plaguing their son.

"It was out of control. He couldn't play sports anymore. It affected his appetite, his mood, nothing seemed to help," said Julie.

The family tried everything they could think of to ease the pain. Essential oils, massage therapy, acupuncture, they even visited a chiropractor, but none could offer Nickolas reprieve. Out of ideas, they turned to a Dallas pain clinic.

"They put him on every kind of pain medication you could think of from hydrocodone to ibuprofen, Tylenol, all the way to oxycodone and oxycontin," said Julie.

She says the drugs gave him some comfort, but left Nickolas with zero quality of life. He was often too drowsy from the medication to interact with family or friends. Attending school was also made difficult. The McCanless family spent nine months trying to find a prescription that would help without the negative side effects, all while hoping someone would one day give them a diagnosis. Then they turned to the Pain Management program at Cook Children's, one of only 35 pediatric pain clinics in the United States.

Dr. Gandhi helped launch the Pain Management program seven years ago. At the time, she was the only pain management physician at Cook Children’s and would visit patients in their rooms while carrying charts in a roller bag. The program has since grown into a multidisciplinary department complete with two board-certified physicians, clinical, physical and massage therapists, nurses and a biofeedback therapist. Instead of treating pain solely with medication, Dr. Gandhi and her team aim to help patients manage it with relaxation techniques, diet, exercise, lifestyle modifications and sleep.

In Nickolas’ case, Dr. Gandhi used many of these treatments as well as nerve block injections, which interrupt how pain signals are sent to the brain. He’d undergone these injections at other hospitals, and they usually offered temporary relief.

“We decided to try the nerve block injections, but every time it would wear off the pain would return, ” said Dr. Gandhi.

She started to think that Nickolas might have a rare condition known as abdominal cutaneous nerve entrapment syndrome (ACNES). It occurs when a nerve becomes ‘entrapped’ in the abdominal wall. Because it’s not common, ACNES is often overlooked and misdiagnosed for a gastrointestinal issue. Dr. Gandhi knew she would have to think outside of the box in treating Nickolas if she was going to keep her promise to him.

“She said she wasn’t going to give up and she didn’t. No matter how many times the pain blocks failed, she would try to find something else,” said Nickolas.

Dr. Gandhi’s search for a cure led her to believe that surgery might be the answer they were all looking for. She tuned to Chad Hamner, M.D., Trauma Medical Director at Cook Children’s for help.

“I told Dr. Hamner what I thought Nickolas had and that a neurectomy may be helpful,” said Dr. Gandhi.

A neurectomy is performed by removing all or part of a nerve. Dr. Gandhi thought that by removing the nerve she believed was ‘entrapped’ that his pain could be stopped. Dr. Hamner agreed to meet Nickolas to see if surgery was a feasible avenue to explore.

“He did some more investigation as well as an exam and decided to do the surgery, and low and behold, it worked,” said Dr. Gandhi.

Nickolas underwent surgery in April. By mid-May, he was doing things he didn’t think he’d ever do again.

“I asked Nickolas what he’d want to do if the surgery worked. He said ‘throw a football,” said Julie.

Three weeks after surgery, Nickolas bought a football. When his dad arrived home from work that evening, his sister told their father that Nickolas had a surprise for him.

“He put his stuff down and I came running out. I threw him the football and he gave me a big hug. We both started crying,” said Nickolas.

He’s now well on his way to being a normal kid again, running, throwing and hanging out with his friends. His mother says she couldn’t be more thankful.

“I know there are hundreds of children out there going through what my son went through,” Julie said. “The only thing I can tell them is don’t give up.”

To make an appointment with Pain Management, call 682-885-PAIN (7246) phone. Click here to learn more about the program. 

Pain Management at Cook Children's

Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

The program's goal is to improve the quality of life for our patients by giving them the tools to cope with and overcome pain. Some of the therapy options are medications, interventional pain procedures, medical acupuncture, relaxation therapy, guided imagery, biofeedback, hypnosis and cognitive behavioral therapy. The team also teaches patients and families how to manage pain through exercise, diet, lifestyle modifications, and sleep hygiene.

The team includes two board certified anesthesiologists trained in pain management, a licensed clinical social worker specializing in psychophysiology, a physical therapist, a clinic nurse coordinator, and referral to a dedicated clinical therapist. Click here to learn more.

More and more young athletes are experiencing pain while participating in sports. Some have traumatic injuries like sprained ankles and torn ligaments, while others experience overuse injuries like low back pain and tennis elbow. All of these athletes can suffer from significant pain on and off the field. No athlete is exempt.

All sports require a baseline of flexibility, strength, stability and endurance, as well as a time of rest between activities to safely perform the required activities. With the rise in athlete specialization in a single sport, played year-round, we have seen an increase in injuries and pain in these young athletes. These young athletes are also starting at a much younger age. Many more stress injuries have resulted, such as ligament tears, shoulder strains, stress fractures and back strains. In addition, there has been a rise in chronic pain (pain lasting longer than 3 months) among younger athletes. I never heard of a teenager with chronic pain when I was growing up! How do we deal with this growing population? “No pain, no gain?” “Just grin and bear it, the pain will go away?” “Slap some ice on it and get back out there?” There needs to be a better way. Fortunately, there is!

The best plan is obviously prevention. However, for the purpose of this article, we will assume the athlete is already experiencing pain. In this case, there are several things to be done. Pain should not be ignored! Our body is trying to tell us there is something wrong. Acute pain should be addressed with the gold standard: Rest, Ice, Compression and Elevation (RICE). We are typically willing to ice, compress and elevate, but many times rest is not followed properly. “He’s our best pitcher!” “If she’s not playing, we will lose our chance to make it past district!” “I really want to play, so I won’t tell coach about the pain.” If we do not allow the tissue to heal properly, the tissue can become weaker and will be at a higher risk for being injured again, maybe even worse than the first time. Now that pain is being addressed properly, what do we do? Now is the time to work on the basics again:

Flexibility: Muscular flexibility is vital. Tight muscles are much more prone to injury than flexible muscles. Tight muscles can be damaged during high velocity movements. Also, tight muscles can alter how our joints move, making other structures more prone to injury, such as ligaments, joints and bones.

Strength: Muscular strength is also very important. Strong muscles allow our bodies to perform the tasks that we put them through. Strong muscles also allow greater protection from injury.

Balance/control: And don’t forget about core strength! This is maybe the most missed strengthening component in most sports and possibly the most important muscle group for any sport! A weak core places an increased stress on other body parts and increases our risk for injury. How can we expect a soccer player to avoid ankle or knee injuries if he/she can’t even balance on one foot?

Return-to-sport: If the athlete’s strength is improving and the pain is under control, we can work on sport specific activities. This is where a physical therapist or athletic trainer with a strong knowledge of sports performance is vital. Coaches properly trained in technique can do this as well as long as they are able to spend dedicated one-on-one time with the athlete.

If pain from a recent injury is not properly dealt with, or the injury leaves the athlete with pain that lasts more than 3 months, chronic pain may develop. Now our focus as a physical therapist is more on return of function versus the pain itself. Seeing a physician that specializes in pain, such as Dr. Artee Gandhi and Dr. Aimee McAnally at Cook Children’s, can be beneficial as well. The physician could prescribe or recommend one or more of the following treatments in conjunction with the physical therapy:

1. Medications to reduce pain or inflammation while working on regaining function.

2. Biofeedback therapy with a psychotherapist, such as Wayne Martin, LCSW, psychophysiologist at Cook Children’s, to help the athlete learn how to relax muscles, reduce stress and visualize performance for relief of pain and return to normal activities.

3. Pediatric massage therapy to address tension and/or increased sensation.

4. Acupuncture therapy to help control pain.

Related links:

• Football injury prevention
• Baseball injury prevention
• Softball injury prevention
• Basketball injury prevention
• Soccer injury prevention
• Hockey injury prevention
• Gymnastic injury prevention
• Tee-ball injury prevention
• Swimming injury prevention
• Tennis injury prevention
• SPORTS resources
• Does your child play one sport?
• 9 ways to prevent injuries in young athletes
• Cheerleader injuries
• Dance injury prevention
• Top 10 questions parents have about sports injuries
• Young athlete's injury prevention guide
• Strength training in children/adolescents (5-15 years)
• Rise of overuse injuries in school-age athletes
• The basics of sports injury prevention for kids
• When growing pains are not growing pains
• Preventing children's sports injuries
• Pain that won't go away