Answers to Mila’s Pain

In January 2023, Mila was diagnosed with central sensitization syndrome, slipped rib syndrome and hypermobility syndrome. For four years, Mila’s mom, Shelley Hunter, had taken her daughter to countless doctor visits to find answers to why she limped when walking and the extreme pain all over her body. When Cook Children's Pain Management was recommended to her, Shelley was hesitant. She didn’t want Mila to just be given strong pain medications. She quickly realized this was not the approach at all.

At Cook Children's Pain Management, the doctor knew exactly what Mila was dealing with right away. 

“She answered all the questions we had for years,” Shelley said. “Instead of dismissing our concerns, she listened and helped us understand Mila’s conditions.”

Mila was referred to the Comfort Ability Program which she attended in March. The relief Mila felt when meeting others just like her was indescribable.

“For so long I felt alone because I was sick in a way that no one else was,” Mila said. “At the workshop, I learned a lot, but the most important thing was knowing there were other people just like me. I finally felt like I belonged.”

Life-changing Workshops Engage Children and Parents 

The Comfort Ability Program at Cook Children’s is one of a few of its kind in Texas. Boston Children’s Hospital is partnering with children’s hospitals throughout the world to give parents and kids the opportunity to engage in workshops that focus on proven coping skills using cognitive behavioral therapy. 

Artee Gandhi, M.D., medical director of pain management, said the six-hour workshops – one for children and one for parents – help children reduce their pain in non-medical ways. Clinical therapists and pain psychologists explain the science behind the pain and how they can best support their children. Through group therapy, children learn strategies to manage their pain and are taught more about their conditions so they can educate their friends, teachers and others. The program is meant to be one piece of a patient’s treatment plan and complement the entire host of options provided at Cook Children’s.

“Others may not see it on the outside, but these children are struggling on the inside, so we give them tools and strategies to employ anywhere and throughout life,” Dr. Gandhi said. “The brain is a powerful tool, and we help them use it.”

The program teaches both children and parents how the nervous system works in the body and why skills rooted in psychology can help. During the workshop, patients learn how to calm down their nervous system through belly breathing, guided imagery, art therapy, aroma therapy, mindfulness and biofeedback therapy.

Patients from 10 to 17 years old with any condition that causes chronic pain for more than three months can participate. Some of the conditions include central sensitization syndrome, chronic headaches, IBS, fibromyalgia and chronic back pain.

A Program Filled with Hope

Matthew Reed, pain management clinical therapist and site director of the Comfort Ability Program, has been at Cook Children’s for 10 years and treats children with chronic pain on an individual basis. He says the goal is always to reduce the attention on pain and get kids back to living. 

“We see a lot of patients who think the pain will last forever and believe there isn’t a path out of it,” Reed said. “There is a lot of hope built into this program, and one of the greatest benefits is the kids connecting with others.”

Patients who attend the workshops also have access to an online platform where they can engage with others around the world with the same condition. The first couple of workshops have been very successful and are now in high demand. 

“It has been very rewarding to see patients realize there is a path out of their pain,” Reed said. 

‘I feel like myself again’

Shelley said even Mila’s teachers noticed that in a matter of a few months, Mila is now a totally different person. She credits the Comfort Ability Program with Mila’s newfound confidence.

“My mental health is a lot better and so is my pain,” Mila said. “I’m starting to feel like myself again.”

“One thing to keep in mind is that while the stewardship focuses on our opioid utilization and prescribing habits and aiming to keep children safe, we can’t ignore the fact that kids will have pain—either acute or chronic. So, it has to be addressed,” says Artee Gandhi, M.D., medical director of Pain Management at Cook Children’s, who also oversees the stewardship program. “It’s not a matter of getting rid of one thing and not replacing it with anything else, or not using it sparingly in conjunction with other ways to treat pain. We recognize both sides of the coin.”

The goal of Safe and Sound is to use other methods of managing pain, she says. It aims “to improve patient safety, reduce the risk for potential child addiction, ingestion, misuse, overdose and death, while promoting best practices through the safe and sound management of pain,” according to its mission statement.

From 1999 to 2019, overdose deaths involving prescription opioids more than quadrupled in the United States—leaving about 247,000 dead, according to the Center for Disease Control and Prevention.

The trend has hit locally, as well. As of May, Cook Children’s admitted 17 patients for opioid-related overdoses, representing a significant jump from 2020 when 16 patients were admitted for the same condition for the entire year. In March, at least four area teens died from overdosing on fentanyl, a synthetic opioid that is 100 times stronger than morphine and 50 times stronger than heroin. The teens purchased the pills thinking they were Percocet, but they were laced with fentanyl, according to reports. Drug dealers often package and sell fentanyl on the streets disguised in forms of other popular medications, such as OxyContin, Percocet or Xanax.

Opioids, which “bind to or activate opioid receptors on cells located in the brain, spinal cord and other organs in the body,” block pain signals and release large amounts of dopamine throughout the body, according to the National Institute on Drug Abuse (NIDA), the leading federal agency supporting scientific research on drug use and its consequences. That flooding of dopamine can reinforce using the drug and make users want to repeat the experience, the agency reports. NIDA lists the most common drugs containing opioids as hydrocone (Vicodin), oxycodone (OxyContin, Percocet), oxymorphone (Opana), morphine (Kadian, Avinza), codeine and fentanyl.

In the late 1990s, the medical community was given the green light to prescribe opioid pain relievers after pharmaceutical companies assured them patients wouldn’t become addicted, according to the U.S. Department of Health and Human Services. Increased prescriptions of opioid meds led to widespread misuse of both prescription and nonprescription opioids before their highly addictive nature became clear. The department declared a public health emergency in 2017 and announced a 5-Point Strategy to Combat the Opioid Crisis.

Despite these efforts, 10.1 million Americans reportedly misused prescribed opioids last year, according to department data released in December.

At first, physicians and prescribers thought opioid medications were a safe, long-term way to manage acute pain and chronic pain—“not recognizing the effects opioids have on the pleasure-seeking parts of our brain,” Dr. Gandhi says. “Opioids not only helped control pain, but they also helped reduce anxiety and depression. By stimulating endorphins, one would feel more outgoing, confident and increase motivation. This property, along with the chemical changes in the brain, alters our biological or physiological set point. Now we need more to achieve the same effect. And if we don’t get the drug, we have withdrawal, which is a horrible feeling. So, now one becomes addicted and seeks ways to get the medication that may not be safe or legal.”

In the 2000s, opioid substance misuse, abuse and overdose deaths continue to climb, she says, adding, “Physician prescriptions have definitely decreased, but unfortunately substance abuse, opioid use and overdose has not. Those numbers are still increasing and are still in the hundreds of thousands of people who die each year from an overdose.”

The increase in opioid overdoses and deaths has trickled over into the younger population, bringing attention to what opioids can do to children and adolescents brains. Research studies show that the earlier children are exposed to opioid substances, the higher the risk of long-term addiction, Dr. Gandhi says.

“What we’re recognizing in the pediatric population is the adolescent brain is set up for risk-taking behaviors. The brain is changing in a way that the prefrontal cortex is the last to develop—it’s developing from the back to the front,” she says. “The front is the part that regulates. But the back is the part that’s about risk-taking, asking questions, wanting to rebel, wanting to find answers for themselves, not wanting to listen to what other people say.

“It’s kind of like they’re a high-speed car without any brakes,” Dr. Gandhi says. “We can prescribe opioids in a safe way to kids, but we really need to be conscientious of how many doses we’re giving them, whether there are other ways to control their pain, making sure parents are the ones giving them their medications and that the medication is locked and secured in a safe place.”

Educating physicians, parents and patients on alternative ways to manage pain is one of the most important goals of Safe and Sound. For instance, under the program, guidelines to manage acute pain have been created, using a multimodal analgesia regimen of acetaminophen and ibuprofen as the primary medications for post-surgical pain management.

“There are studies that show when those medications are used together and scheduled for the first 72 hours after surgery, you need less narcotics, if any at all,” she says. “And that they’re more effective than even an oxycodone.”

During surgeries, physicians may use local anesthetics or nerve blocks as a proactive way to minimize postoperative pain. Families also are educated ahead of time on what to expect during post-op and what the plan will be for medications.

“Every patient goes home with a handout and discharge instructions on how to manage pain, including things like ice and heat, rest, utilizing relaxation and breathing apps, ways to help cope with distraction,” she says. “We tell parents that it’s OK for them to have a little bit of pain after surgery. As long as they can function, they can eat, do the things they need to do to recover, that’s the focus, as opposed to saying, we’re just going to give you these pills and this will be it.”

There’s a natural course for acute pain, Dr. Gandhi says, and if a patient is not healing accordingly, the individual needs to be reevaluated. “If someone’s not following that natural course, we want to assess why that is the case. It’s important because pain can always be a sign of something else. We want to be able to address it before blankly prescribing a pill,” she says.

The Safe and Sound approach appears to be working, says Lorrainea Williams, Cook Children’s Patient/Medication Safety Officer. In the past, surgical patients were usually sent home with a medication that contained both an opioid and acetaminophen. Now, they’re sent home with a medication plan that uses alternating acetaminophen and ibuprofen doses as the primary method to control pain. Patients also may receive a small amount of low-dosage medication that contains only an opioid to be used as a “rescue” in case their pain intensifies, she says.

In 2018, patients who needed pain relief were sent home with an average of 25 doses of medication that contained an opioid. That number has steadily decreased since the program began, and now the average is 12 doses for patients who need additional pain relief, she says.

The number of post-surgical patients who returned to the emergency room or had to be readmitted because of severe pain also has lowered since the hospital decreased the amount of opioids prescribed, Williams says, adding the number of return patients from 2018 to present dropped by 34 percent.

“Based on the numbers, we can determine that we are effectively managing our patients’ pain with less opioids,” Williams says.

The Safe and Sound program also established guidelines on prescribing opioids, and all opioids are prescribed electronically through our system, which tracks them, Williams says. Under the law, physicians can still write paper prescriptions for opioids if special circumstances exist.

But there are exceptions for prescribing opioids under the guidelines developed for Safe and Sound. Opioid therapy is to be considered only if the physician expects the benefit for pain and function to outweigh the risks and is reserved for moderate to severe pain in patients with conditions such as post-operative pain, trauma, sickle cell disease, palliative or end-of-life care.

As for patients dealing with chronic pain, the preferred first-line treatments under the Safe and Sound program include using more beneficial non-opioid medications, making positive lifestyle changes (such as getting enough sleep) and trying complementary therapies, depending on each individual’s condition. The non-pharmacological therapies include acupuncture, aromatherapy, biofeedback, cognitive behavioral therapy, massage, positioning, and Transcutaneous Electrical Nerve Stimulation (TENS).

It all comes back to an evidence-based approach.

“For example, there are some wonderful studies that show the benefits of acupuncture for chronic headaches and the benefits of massage for chronic back pain,” Dr. Gandhi says. “There also are studies that show the benefits of Tai-Chi for insomnia, fatigue and other chronic conditions.”

When it comes to treating chronic pain conditions, physicians must rely heavily on functional ability, such as how difficult is it for patients to walk to the bathroom, meet with friends, sit in a car or go to school, she says. The goal is to improve functional ability because that improves patients’ lifestyles, relationships and healthy routines.

“Trying to keep that routine is what we talk about when it comes to chronic pain, and then maximizing the appropriate types of medications,” Dr. Gandhi says. “All pain medicines are not the same. I would not throw opioids on top of opioids for chronic pain because that would be like trying to treat an ear infection with an antibiotic that treats urinary tract infections. Opioids have a limited role in chronic pain. They can actually induce a hyperalgesia response, where the sensitivity of those pain receptors increases. So, you actually could experience more pain with longer exposure to those opiates.”

For patients who are prescribed opioid medications for acute pain, it’s important to return unused pills once the pain has been managed, she says. The pharmacy at Cook Children’s has become a take-back location, where families can drop off unused meds. Other area pharmacies also have been designated as take-back locations.

“They don’t have to talk to anyone. There’s a little slot, you put your bag in there and walk away,” Dr. Gandhi says. Patients sent home with opioid prescriptions get a text message within a week reminding them to dispose of their unused medications and providing a website link that shows them the nearest take-back pharmacy location.

The program’s success hinges on physicians and parents working together and, so far, they have responded favorably, Dr. Gandhi says, adding the evidence-based approach is much more proactive than in the past. It focuses on pain management for each individual rather than a generalized approach, she says.

“Where it comes back to is all of us working together and being really consistent in our messaging,” she says. “We’ve done a lot of education for our staff as well, learning modules, training modules, continuing education opportunities. Parents are hearing the same message from the beginning, and not just when their children are in the throes of a situation.”

Dr. Kirk Pinto, M.D., a Cook Children’s urologist, says he has found the stewardship program to be helpful for his patients.

“I was skeptical at first, but I learned from my colleagues, who do essentially the same things I do, that these patients could be adequately managed with fewer or less opioids,” Dr. Pinto says. “I have always promoted the use of Motrin and Tylenol as first-line therapies. With all the bad publicity that opioids have gotten lately, parents are much more receptive to nonnarcotic pain management after surgery.”

Dr. Gandhi says she has been pleased by the overall response to the stewardship program.

“I have to say our surgeons and providers have been very open and receptive to this information because everything that we’ve brought forward has been evidenced-based,” she says. “Once we’re able to give them factual information, they’re very willing to change their culture or their prescribing habits, knowing that there’s literature that supports this change.

“We also monitor readmissions for pain or emergency room visits for pain. So we’re able to give them the data that shows kids are not coming back in with more pain, even though we’re prescribing less opioids,” Dr. Gandhi says.

Overall, families also have been on board with the Safe and Sound approach. They get a lot of education through media and commercials, she says, so they’re more aware of concerns surrounding opioid medications.

“They don’t necessarily want their kids to be on them long-term or to get high doses or go home with a lot of medications,” Dr. Gandhi says. “Obviously, you still get into situations where maybe there’s a little bit more stress around it, but I think everyone’s done a great job rallying around parents and supporting them. We’re not letting their kids suffer—they’re still getting the relief they need, just in different ways.”

Now that that’s out of the way.

They’re painful, not fun to look at and just all around annoying, for everyone, but especially for teenagers.

Which is why it’s important that parents and teens know what they are and what treatment options are available.

What are fever blisters?

Fever blisters are ulcers of the lips, usually at the border of where the lips meet normal skin. Other types of ulcers can be confused with fever blisters but these usually occur inside the mouth or on the tongue.

They are caused by a recurrence of a viral infection known as herpes simplex virus (HSV). Many families are not aware of their children’s first HSV infection because it may be mild or have no symptoms. They are contagious, so it’s not uncommon for multiple family members to struggle with fever blisters.

The sores can come and go, especially during times of stress, illness, sunlight or fever. Most commonly they’ll appear around prom or other times when pictures are super important (acne has a similar skill). Before the sores erupt, some people will feel itching or pain in the area, but not always.

How can we treat fever blisters?

There are two main considerations for treatment of fever blisters:

1. Who needs treatment
2. What strategy of treatment are we going to use

Treatment is unnecessary for most teens with fever blisters. If the pain isn’t severe and their outbreaks are small and short, it’s perfectly fine to keep an eye on them and treat pain with topical therapy or ibuprofen.

In children with more severe but infrequent issues, treatment with an anti-viral medication can be started when they first begin to feel the signs of an oncoming fever blister. This treatment has been shown to decrease the severity and length of the outbreaks.

What is a UTI?

A UTI is an infection of the urinary tract or the bladder.

What are the symptoms?

Fever is the number one symptom. Parents and older children should also be looking out for a different smell or color change when urinating. In school-aged children and teens, they may complain that it hurts when they go to the bathroom. Older children may experience fever, vomiting, abdominal pain, or even back pain. Teens may also notice they are urinating more frequently and may have a burning sensation when they go to the bathroom.

Can you get a UTI without having underlying issues?

Yes. Drs. Combs and Chong both agree it’s common for girls to get a UTI without underlying medical issues. If proper hygiene is followed, they believe UTIs often happen because of female anatomy and how close everything is in that specific area.

Are UTIs treatable?

Yes, UTIs are treatable with antibiotics. If a UTI festers for a long period, it can cause a more severe infection that may have to be treated with IV antibiotics as opposed to oral.

Are boys or girls more susceptible to the infection?

Girls are more likely to get a UTI because bacteria from the outside of the body can get inside the urethra, which is shorter in girls. In younger girls who are still in diapers, UTIs can happen if they have excessive diarrhea. Older girls can contract UTI’s from not wiping front to back, or practicing poor hygiene. The highest risk for a UTI is in girls, followed by uncircumcised boys, and then boys who are circumcised.

What advice would you give to parents?

Dr. Chong: Adequate fluid intake is important to help flush things out. For younger children, ensure that you’re teaching them how to wipe properly from front to back and do not allow them to sit and play in dirty bathwater for too long as that can cause irritation and lead to symptoms that can look like a UTI.

Dr. Combs: Stay hydrated as we begin to hit the summer months. Be sure to take a shower and change clothes or change out of any sweaty clothes if you’re not taking a shower. Moisture affects bladder health and female health.

Important to note:

UTI’s have similar symptoms to sexually transmitted infections (STI) such as gonorrhea and chlamydia. If your child is sexually active, you may want to get them checked out for a UTI and STIs.

Cook Children’s has been utilizing intranasal ketamine as a rescue treatment to break unrelenting migraine attacks in the emergency room and inpatient setting since December 2016. Originally, the drug was utilized out of necessity due to a shortage of dihydroergotamine – the medication previously used most frequently for persistent migraine attacks which failed to respond to outpatient therapy. The team presented their findings at the International Headache Conference in 2017.

“Until that time, little to no experience with nasal ketamine had been reported in pediatric patients,” said Adrian Turner, a clinical pharmacist at Cook Children’s. “However, our institution’s experience is broadening the horizon of potential treatment options.”

Now the U.S. Food and Drug Administration has approved esketamine, a chemical compound similar to the anesthetic ketamine, to relieve depression in hours instead of weeks. The drug, the first to be approved to fight depression since 1988, is believed to help patients who have been treatment resistant to other depression therapies.

Esketamine, developed by Johnson & Johnson, will be marketed under the name Spravato® and is a nasal spray that allows the drug to be absorbed through the lining of the nose, directly to the blood stream.

Patients using Spravato® will also be required to enroll in a Risk Evaluation and Mitigation Strategy (REMS) program to monitor for serious side effects related to sedation, dissociation, abuse/misuse and to support its safe use. Patients will be required to self-administer the drug under direct observation of a healthcare provider.

“This is potentially a game changer for millions of people,” Dr. Dennis Charney, dean of the Icahn School of Medicine at Mount Sinai in New York, told NPR. “It offers a lot of hope.”

At this time, no plans have been made at Cook Children’s to use ketamine for depression, but intranasal ketamine has been vital for helping patients with severe migraines.

Intranasal ketamine for migraines not only worked for a majority of Cook Children’s patients (almost 70 percent of patients between December 2016 and October 2017), but was safe and well tolerated. Any side effects seen, some dizziness and very mild dissociative effects (i.e. feeling funny, out of body experience) were mild and didn’t last longer than one hour after administration.

No patient had to stop due to side effects.

Turner said using ketamine for migraine offers many benefits:

1. Patients don’t need an IV or injection to receive treatment.
2. The number of medications needed to treat the pain may be reduced.
3. The time needed to treat the pain may be reduced.
4. It provides patient with a wider variety of options to treat their migraine.

Ketamine was first created in the 1960s and was largely used as a battlefield anesthetic and veterinary medicine. By the 1980s, hospitals were using the drug for sedation and severe pain.

Until recently, the FDA approved the drug in patients 16 and older for general anesthesia (dental procedures, outpatient surgery, intubation). Compared to other medications used for sedation/anesthesia, ketamine is relatively safe due to less effects on breathing and blood pressure.

In the past few decades, ketamine became the focus of studies for the treatment of depression. The Department of Health and Human Services reported an estimated 16.2 million adults and 3.1 million adolescents aged 12 to 17 in the United States had at least one major depressive episode. This is especially important when considering the rates of suicide. In 2016, the Centers for Disease Control and Prevention (CDC) reported suicide as the number 10 overall cause of death with more than 44,000 deaths attributed to suicide reported. Even more troubling, suicide was reported to be the number 2 overall cause of death for people aged 10-34, number 4 for people aged 35-54, and number 8 for people aged 55-64.

“Expanding treatment options is not only beneficial to improve the quality of lives of patients with depression, but it may also help save many lives in the future. Depression can be very difficult to treat,” Turner said. “Compared to other diseases and diagnoses, depression is not a one-size fits all treatment. Expanding the treatment options is a huge benefit to patients who have exhausted several treatment options with little to no relief.”

Aside from the new indication for depression, ketamine and esketamine both have potential use in post-traumatic stress disorder (PTSD), migraines, refractory/chronic pain conditions, and seizures. There are active studies underway in the U.S. and internationally examining the use of ketamine to treat PTSD, status epilepticus, and oral ketamine to treat chronic pain in adults and children. Cook Children's Pain team is currently treating patients with chronic/refractory pain with a ketamine IV and oral ketamine.

Some may know ketamine as a party drug. Ketamine (also known as Special K, Super K, and Vitamin K among other street names) is known as a potential drug of abuse and a drug used to facilitate sexual assault crimes. When taken illegally, users often inject, snort, or smoke the drug to feelings of calmness and out of body experiences.

Unfortunately, because these are often taken in very large doses, users also experience complications such as hallucinations, immobility, amnesia, and unconsciousness. It’s especially dangerous when given in very high doses or mixed with other drugs and/or alcohol because this greatly increases the chances of serious health problems and/or death. The World Health Organization notes that ketamine is a potential drug for abuse, but the actual incidence of dependence or overdose is rare. Chronic abuse has been linked to urinary tract problems.

But under the guidance of health care providers, ketamine has been highly beneficial.

“Our experience with ketamine has been positive,” Turner said. “The success we have seen at Cook Children’s combined with the approval of esketamine for refractory depression is very exciting. As a health care professional, it is invigorating to see years of research produce positive outcomes for our patients. I look forward to seeing Cook Children’s on the forefront of contributing to this new frontier. ”

How had it come to this for Madisyn Metaxas?

Madisyn, 19, has suffered outbursts of pain that, at times, left her entertaining the idea that her life was too agonizing to continue.

“Here I am at the edge of 16 not being able to walk and my legs were on fire,” she said. “My legs were swelling up and I felt like my … bones were being crushed. My legs were turning purple, they were turning red. I had black spots all over me. I had white spots all over me, and no one knew what was going on.”

Read full story here.

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.

If you want proof, read this diverse list of our most popular stories of 2016. We hope you enjoy our look back:

10. 7 Ear Infection Myths Every Parent Should Know. Parents flocked to this blog from Doc Smitty. Can your child go swimming with an ear infection? Do all ear infections need antibiotics? If your child gets ear tubes, will the infections stop?  All this and more was answered in this blog.

9. 7 Online Challenges This ER Doctor Warns Could Be Deadly Oh the Internet. Where kids do all kinds of things to get noticed and maybe go to hospital in the process. We asked our medical director of the Emergency Department to look at seven really silly, really dangerous dares that kids (or grownups for that matter) shouldn't try at home. 

8. Almond Milk: A Nutty Fad or Healthy Alternative. Almond milk sales have gone through the roof over the past decade. But is it the right drink for your child? Doc Smitty gave the answer in this informative piece. 

7. The Death of Ethan: A Life of Chronic Pain Ends in Tragedy. This is the most recent entrant in our list of top 10 stories. Only the fact that it was published in December kept this story out of the top five. We were so honored that Ethan's parents shared their son's story of a life filled with chronic pain. They want you to read it to learn about their son and hopefully help other children who may be suffering as well.

6. New Hope In Fight Against Deadly Brain-Eating Amoeba. The Lewis family holds a special place in the hearts of everyone involed in the Checkup Newsroom. Following the tragic death of their son Kyle to a brain infection caused by a water-born amoeba, Jeremy and Julie Lewis created Kyle Cares. Read their inspiring story as they fought to bring a drug to Cook Children's and other hospitals around the nation that may save children's lives.

5. 11 Tips That Could Save Your Daughter's Life.  In Janaury 2016, Rylie Whitten made national headlines after suffering one of the worst cases of toxic shock syndrome (TSS)  that her doctors had ever seen. Rylie's story moved us to run this informative piece on TSS that we hope every parent of a daughter reads.

4. A Sign From Heaven: Family Travels Across U.S. For Care at Cook Children's. A family's desperate search for answers on Google led them to Cook Children's. Read the fascinating story of what led this family to travel from Detroit, Mich. to Fort Worth, Texas, to be treated for a rare condition called hyperinsulinism.

3. The Most Common Rash You Never Knew About. Ever heard of molluscum contagiosum? We hadn't when Dr. Diane Arnaout wrote this blog for the newsroom. Dr. Diane's informative blog "that will save you and your child pain, money, time and anxiety" went viral quickly and became our third most read story of the year.

2. RSV On The Rise: 6 Things Every Parent Should Know. Here we are at the beginning of 2017 and we have been lucky in that we haven't seen much flu yet at Cook Children's. But we have seen plenty of RSV (respiratory syncytial virus), which explains the popularity of this great blog from Dr. Lizy Varughese.

1. Let's Learn Something: Bouncers, Jumpers and Walkers. Dr. Diane Arnaout's "Let's Learn Something" series was a big hit this year and none were bigger than this tale of caution. Dr. Diane's blog on how baby bumpers, bouncers and activity centers could play a role in your baby's motor delays is our most read new story of 2017. You've probably read this blog. But if you aren't one of the more than 117,000 readers who took a look, now's the time. And if you have read it, feel free to click again.

Well, that's it for 2016. Thank you all for reading. We'll be back with plenty more stories to tell in 2017.

The Centers for Disease Control and Prevention and the American Academy of Pediatrics are recommending against spray vaccines, such as FluMist, after finding it only 3% effective in preventing the flu in children. Instead, they're urging parents and pediatricians to opt for the shot.

If your child is like most, this is bad news because needles are often enemy number one.

The good news is, there are ways to make this undesirable trip to the doctor's office a little less traumatic. At Cook Children's Medical Center, Child Life Manager Janis Smith discusses ways to help kids cope with pain and stress. When it comes to needles, she says a little distraction can go a long way.

"An iPad, a book, or even engaging conversation can often be enough to take a child's mind and eyes off of the shot," said Smith. "We also encourage deep breathing and sometimes utilize a cold spray to help numb the skin."

A newer technique taking the pain out of shots is called Buzzy. This friendly-looking device comes in the form of a bee or lady bug and can trick the body's nerves with cold and vibration.

"Buzzy's wings are made of ice packs and its body buzzes. When placed above the injection site, these sensations knock the nerves off their game and help eliminate and/or minimize the pain from the shot," said Smith.

While many pediatricians provide tools like Buzzy in their offices, parents can also buy their own in Cook Children's onsite pharmacy.

Another way to ease the sting of the flu shot is comfort positioning. This means creating a secure hold, like hugging, that offers comfort to the child while immobilizing the extremity needed for the procedure (such as the arm). This minimizes anxiety as well the need to hold a child down, which can be traumatic.

For older children, it may help to ask them to do something, such as focusing on an iPad.

"Allowing children to play an active role during the procedure process can often minimize fears and encourage positive coping,'" said Smith.

Smith also suggests offering validation to a child who is afraid of shots.

"Try saying something like, 'I know that you don't want to do this, but it's a way we can help you from getting the flu,'" said Smith. "In the end, no one likes shots. But when children do need shots, we want to provide them with opportunities to cope successfully and help make them as painless as possible."

About the Source

Janis Smith is a Child Life Manager at Cook Children's Medical Center in Fort Worth, Texas. Child Life specialists work with children and families to help them cope with the extra challenges of living with chronic illness.

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.

These days many of the kids’ sporting associations, coaches, and sometimes even parents seem to be treating kids as little adults. However, kids are not just small grownups. Children are still growing, which makes them more prone to injury. They are also developing their strength, coordination and endurance as they grow. Kids participating in sports together, even though they may be the same age, vary in size as well as physical and psychosocial maturity.

Recently, there has been an increasing trend in younger children specializing in one sport. Specialization prior to adolescence can cause increased injury rates, early burn out on the sport and unwanted psychological stress for the athlete.

Counter to current trends, studies have shown that athletes at the elite level were more likely to start competing at a later age and compete in other sports until late adolescence. Research also supports that children who participate in a variety of activities and don’t specialize until reaching puberty are more likely to be more consistent in their performance.

Participating in a variety of sports helps with coordination, skill development, and gives the child a chance to rotate use of specific muscles to decrease the risk of overuse injuries.

It’s important for athletes, parents and coaches to be aware of the signs and symptoms of an overuse injury. These can include:

• Pain
• Swelling
• Changes in form
• Decline in performance
• Weight loss
• Anorexia
• Sleep disturbances.

Children also have the added risk of injuring their growth plates. What may cause a sprained ankle in an adult has the potential to fracture a growth plate in a child. These injuries have the possibility to disturb growth of the injured bone and cause deformity. A young athlete should never attempt to “push through” an injury. Too much stress on the bones or muscles can lead to tissue breakdown and further injury.

To prevent these injuries, the American Academy of Pediatrics (AAP) and American Academy of Orthopeadic Surgeons (AAOS) recommend: 

1. The athlete should be coached by properly trained people who are knowledgeable about proper form and technique.
2. Athletes should only participate at a level consistent with their abilities and interest levels.
3. It is important that the athlete is participating in activities they enjoy. The athlete’s desires should control their intensity of participation.
4. Athletes should not play one sport or type of sport (i.e. throwing) year round.

Young athletes should be followed by a health care team who can monitor the athlete’s body composition, cardiovascular system, sexual maturation and evidence of emotional stress. It’s recommended that children participating in high levels of activities have an ongoing nutritional assessment to look at total calories, balanced diet and intake of calcium and iron to ensure adequate intake for growth.

If at any time your young athlete is having pain or any of the symptoms above, please seek appropriate medical attention.

More resources from the Cook Children's Sports Performance Orthopedic Rehab Team Specialists (SPORTS):

• The basics of sports injury prevention for kids
• Rise of overuse injuries in school-age athletes 
• Top 10 questions parents have about sport injuries
• Young athlete’s injury prevention guide

About the author

Amanda Stukey, PT, DPT, is a physical therapist for the SPORTS program at Cook Children's. Our physicians, therapists, nurses and technologists work exclusively with kids and understand the unique needs of a growing athlete's bones, muscles, body and mind.