Stories about: Ask the Expert

Code talker: A Q&A with genetic counselor Kira Dies

Kira Dies, a genetic counselor, won the Code Talker Award.

Your child has just been diagnosed with a rare genetic disorder. Your pediatrician has never heard of the condition and the internet doesn’t offer much information. Where do you turn?

Kira Dies, a genetic counselor in the Department of Neurology at Boston Children’s Hospital, helps parents with these hard questions every day. One of about only 4,000 genetic counselors in the country, Dies has been trained in handling both the scientific and emotional sides of genetic disorders.

Dies was also the recent winner of the Code Talker Award, presented by Genome Magazine and the National Society of Genetic Counselors (NSGC). Two other genetics counselors from Boston Children’s were also nominated, Casie Genetti and Beth Sheidley.

Although Kira works in neurology, primarily with patients who are diagnosed with tuberous sclerosis complex (TSC), the nomination that won her the Code Talker award was from Kasey Edwards, mom of Robbie, who was diagnosed with a rare type of hereditary spastic paraplegia, SPG 47. At the time Robbie was diagnosed, only one other child in the United States was known to have the same diagnosis.

We sat down with Kira to learn more about her role at Boston Children’s.

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Why you should only use antibiotics if truly necessary

Four ways that antibiotics can cause real problems

Let’s be honest: most parents feel better when their sick child is prescribed an antibiotic.

There’s just something so reassuring about having a prescription. It’s hard to feel like all you can do is wait and give your child TLC; it feels better to do something. Even when the doctor says that your child has a virus, and explains that antibiotics treat bacteria, not viruses, it’s common for parents to think: but what if there is even a little chance that there is a bacterial infection along with — or instead of — the virus? It can’t hurt to be safe, right?

But that’s the thing: it can hurt. Here are four ways that antibiotics can cause real problems.

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Dealing with a diagnosis of epilepsy: Common questions from parents

Illustration of brain with epilepsy

A diagnosis of epilepsy can seem overwhelming: You likely have a lot of questions about how seizures — and their treatment — will affect your child’s life and what that might mean for your family. That’s why education is crucial for helping ensure that you understand as much as possible about the condition. Events such as the Fifth Annual Epilepsy Awareness Day at Disneyland are wonderful opportunities to learn from experts and from other families. Here, Dr. Arnold Sansevere of the Epilepsy Center at Boston Children’s Hospital answers five common questions from parents and kids.

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Teens and opioids: Time for an open conversation

woman shooting heroin

National surveys have found that teens today are much less likely to use alcohol and drugs compared to their parents’ generation. In fact, the proportion of high school seniors who chose not to use alcohol, tobacco, marijuana or other drugs has increased from 3 percent to 25 percent in the last thirty years. This remarkable good news is overshadowed by the growing number of teens who are daily marijuana users and the recent increase in opioid-related deaths among young people. It is important to understand the roots of this discrepancy in order to address it.

Statistics show that between 2014 and 2015, the rates of drug overdoses — mainly due to opioids — increased by 19 percent in teens, and are now double what they were in 1999, proving that young people are an important part of the equation. We know that most adults with addiction problems started using when they were teens and those with opioid use disorders are no exception. As a pediatrician and adolescent health specialist, I see this as both a challenge and an opportunity.

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