The announcement is not a surprise by any means for caregivers at Cook Children’s who see opioid abuse and misuse among children ranging from babies to teens. Neonates are exposed in utero and experience neonatal abstinence syndrome as a result.

In 2016, 21 children were seen by Cook Children’s Emergency Department as a result of poisonings by opioids (10 accidentally, 11 intentionally). Nearly twice a month, children between the ages of 1 and 19 were arriving at Cook Children’s because of these dangerous drugs.

Much of the national focus has been on adults addicted to opioids. In fact, most programs and position statements refer to adults and fail to address the issues our children are combatting. Until now.

Artee Gandhi, M.D., is among Cook Children’s caregivers who are leading efforts to make changes in opioid distribution.

She is working on new guidelines to create patient information handouts on safe opioid prescribing within Cook Children’s. A plan is also in place to establish safe monitoring and risk assessment through electronic records. Dr. Gandhi is also on the Fort Worth Safe Communities Coalition Drug Overdose and Poisoning Prevention Task Force.

Dr. Gandhi says the problem for many children is that health care has focused its attention on treating children with medications.

“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,” said Dr. Gandhi, who is the medical director of Pain Management at Cook Children’s. “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.”

Another danger is when younger children find grownups’ prescription drugs and pop them in their mouth. Jamye Coffman, M.D., a pediatrician who specializes in child abuse, says that leaving these prescriptions where young children can access them usually falls under neglectful supervision from the perspective of the Texas Department of Family and Protective Services.

“However, there is also potential for a criminal charge for child endangerment,” Dr. Coffman said. “We see the criminal charge for the most part with illegal drugs which would include opioids obtained illegally. If you have followed the usual precautions of keeping them out of reach of the child, but they somehow manage to get it then it is an unfortunate accident.”

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.

“No part of our society — not young or old, rich or poor, urban or rural — has been spared this plague of drug addiction and this horrible, horrible situation that’s taken place with opioids,” President Trump said. “This epidemic is a national health emergency.”

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

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.”

With Megan’s story, President Trump made Pompe a trending topic on the Internet. As Ambrea watched the speech, she could only hope it was the beginning of some much needed attention for the neurological disorder.

Ambrea’s daughter, Atia, was diagnosed with Pompe at Cook Children’s Medical Center when she was 5 months old. At the time, she had never heard of the disease that has forever changed her family’s lives.

“What is it? How do we fix it? Is it something easy?” Ambrea remembers asking doctors after being told of Atia’s diagnosis. “It absolutely has not been easy.”

Pompe, or Pompes, disease is caused by a lack of alpha-glucosidase (GAA). Without this enzyme, the body cannot breakdown glycogen which is the molecule that we use to store the energy from sugars. Glycogen builds up in muscle tissues, including the heart. It can present at different ages, depending on how much enzyme activity is present.

Infantile onset is the most severe. Without recognition and treatment, most infants will die of heart failure by 2 years of age. Older children and adults often have severe muscle weakness, affecting the muscles that allow breathing.

“As with many neuromuscular disorders, brain function is normal, leaving these individuals trapped in a body that is too weak to respond to commands,” said Warren Marks, M.D., medical director of the Movement Disorder and Neurorehabilitation Program at the Jane and John Justin Neurosciences Center at Cook Children’s.

Treatment involves at least biweekly intravenous infusions enzyme replacement (Lumizyme). Early treatment with enzyme replacement can slow the progression of the disease.

Dr. Marks was part of the trials to get the enzyme treatment approved. Atia is now one of three children currently participating in the therapy at Cook Children’s.

It was Feb. 23, 2016, when the Jones’ family journey with Pompe disease began. Ambrea picked up her daughter from day care and was told Atia wasn’t feeling well. Ambrea took Atia to Cook Children’s where she was diagnosed with RSV.

Doctors ran an X-ray and noticed their first clue to Pompe – an oversized heart. More testing continued and more specialists were brought in to care for Atia. “That’s such a good team at Cook Children’s,” Ambrea said. “They were the ones who put two and two together and suspected Pompe.”

Doctors sent tests to Duke University, one of the nation’s leaders in Pompe treatment, and it was confirmed that Atia had the disease. She was then put on Lumizyme.

For the next three months, the Jones family lived at Cook Children’s. Unfortunately, the answer of the diagnosis brought more questions and fears.

“Dr. Marks told us to prepare for the worst,” Ambrea remembers. “He said there was a chance she may not make it a year or even to 6 months because of the adverse effects of Atia’s heart. The fear of losing your child’s life was the hardest thing. But seeing our little girl fight … it drove us, my husband Tim too, to fight. Your child may have a death sentence … no one expects to hear that. But now look at us, a year later and so far, we’ve made it.”

Ambrea said each patient’s journey with Pompe is different. Megan Crowley is wheelchair bound. Atia has a G-button and a port, but right now she’s not sure what will happen in the future.

Tim and Ambrea are carriers of the gene that produces Pompe disease. Their oldest daughter, Amaria, has been tested for the disease and is a carrier, but will not be affected by the disease. Giving the family some relief in what has been a trying year.

Ambrea says the other saving grace for her family has been the care they have received at Cook Children’s. She calls pulmonologist, Karen Schultz, M.D., “my girl.” She says Matthew Dzurik, M.D., a cardiologist at Cook Children’s, helped to discover the diagnosis early and put her in touch with people at Duke for appointments with physicians there.

Dr. Marks has been the glue and constant throughout their daughter’s care and the physical therapists, speech and occupational therapists have “worked our little girl out” both at Cook Children’s and their home.

Atia has a long road fight in front of her, but Ambrea hopes that with the mention of Megan Crowley sheds new light on a devastating disease.

“I know the president can be polarizing,” Ambrea said. “But even if you aren’t a supporter of the president, without a mention of Megan Crowley most of us probably wouldn’t know about her and now Pompe disease. My prayer is now more people will be talking about Pompe. That maybe more people Googled it and that action to better care for our kids who have this disease.”

No.

So why are we discussing this issue again?

Because Donald Trump linked vaccinations to autism in last night's debate between Republican presidential candidates.

“Autism has become an epidemic, 25 years ago, 35 years ago, you look at the statistics, it’s not even close,” he said. “It has gotten totally out of control.”

He went on to say he had evidence of a relationship between autism and vaccinations.

I wish I had a voice in the debate last night, I would have been less political and more factual.

What can’t be debated are the facts on this issue: Multiple studies done by different people in different places have shown consistent results that vaccines do not cause autism.

There have been multiple theories proposed over time as to why vaccines might be a cause of autism. In my checkups and vaccine discussions, I generally address the issue of vaccine safety by answering three questions:

No. 1 - What does basic science say?

No. 2- Do studies of groups of children (vaccinated vs unvaccinated) show a problem?

No. 3 - What do you do with your own kids?

Basic Science

The basic science and scientific community has overwhelmingly supported the use of vaccines in children over time. Take a look at any major medical organization and they support vaccination. The overwhelming majority of pediatricians support vaccines according to the Centers for Disease Control schedule. Just so you don't think you’re in the minority, the overwhelming majority of patients have their child vaccinated according to the same schedule.

Over time, various concerns about vaccines have been brought up. Basically the way it happens is like this … someone comes up with a theory as to why vaccines might be a cause of autism. The scientific community starts to complete studies to determine if it could be a concern. Over and over, the theories have been disproven. Here are three specific examples of this pattern.

Population Studies

I believe that research has shown, through basic science, that vaccines are safe. But, there are studies that have looked at the problem from a different perspective.

In an example from 2010, two researchers from the University of Louisville, Dr. Michael Smith and Dr. Charles Woods, studied a group of over 1000 children to determine if delayed vaccination or on-time vaccination affected developmental outcomes. The study was published in Pediatrics (the journal of the American Academy of Pediatrics) in June 2010.⁵ The study compared children who were vaccinated “on-time” (received vaccinations within one month of the recommended schedule) with children who were not on-time.

The testing looked at multiple different tests, which included outcomes for speech, intelligence, memory and behavior control (among a few others). Results showed that children who were vaccinated on-time showed improved scores in intelligence and naming questions, all other testing showed equivalent scores. If delayed vaccines protected against autism or other developmental problems you would expect those vaccinated on time to show deficiencies in many of the areas tested.

Another study done in Australia, released in June 2014 looked at multiple combined studies totaling 1.2 million children. The findings were overwhelming supportive and showed no link to autism for any of the following: vaccination and autism, vaccination and autism spectrum disorders, and autism and MMR/thimerosal/mercury.

These are just two examples of many studies that have shown vaccines to be safe and not a cause of autism, even when looking at large studies of populations over time.

My Personal Practice

The science tells us that antigen load (and load on the immune system has actually decreased) and population studies have shown that children vaccinated on time do not have developmental problems.

But the real point I like to discuss with my families is this: I vaccinate my kids on time. Each of my children has been vaccinated on time without hesitation. I am confident that by doing so I have not harmed them in any way and I will continue to vaccinate them with all available vaccines according to the CDC schedule.

I am willing to have an open and honest discussion with any family about their choice to vaccinate, their choice to vaccinate on an alternative schedule, or any other issue surrounding vaccination but I do feel strongly that vaccines are safe and that I am not putting any child at risk by vaccinating and vaccinating on time.

In summary, I have studied this issue extensively and have seen no study that convinces me that vaccines are the cause of autism or any other concern. I consider them to be the most important thing that I do to prevent disease in my patients and will continue to vaccinate my children and my patients with confidence.

Vaccines work. Vaccines are safe. Donald Trump shouldn’t change your mind.