May is Better Hearing & Speech Month

Alaa Ramadan, MD, PGY2, Baylor College of Medicine

As a parent, you are eager to know what your baby’s first word will be. But did you know significant hearing loss is present in one to six per 1,000 newborns?  Newborn and infant hearing tests identify most children with hearing impairment. But many may not become evident until later in childhood. Hearing loss is not always present at birth. In this blog, we will explore other causes for hearing impairment in children.  

Hearing is essential for language development. If you have any concerns regarding your child’s hearing, speak up!  Let your child’s pediatrician know and they will guide you through further investigation, testing and resources.

First, you should be aware of possible indicators for hearing loss. If any of these apply to your child, bring it up with your pediatrician during an upcoming visit.

• Family history of hearing loss
• History of infection during pregnancy
• Birth weight less than 3.5 pounds
• Ear or other facial anomalies
• Severe jaundice requiring transfusion
• Meningitis
• Exposure to medications toxic to hearing during pregnancy
• Any concerns regarding developmental delay
• Recurrent or persistent ear infections
• Inattentiveness or trouble focusing in school
• Poor social interaction

Next, let’s clear up some misconceptions you may have heard about a child’s speech development – all circumstances that may indicate speech or hearing problems.

MYTH: “He is not talking much because he is learning two languages at once.”
FACT: Living in a bilingual home should not hinder your child’s speech development.

MYTH: “He’s a boy, and boys take longer to talk.”
FACT: During the first few years of life, boys and girls actually develop at a similar rate.

MYTH: “She doesn’t talk, but she understands everything I say.”
FACT: Both receptive and expressive communications are important developmental skills.

MYTH: “It’s OK as long as I understand what he is saying.”
FACT: By age 2, 50 percent of speech should be intelligible to strangers.

If you are concerned about your child’s hearing or speech, talk to your child’s doctor. There are developmental screening tools, referrals for further assessment through Early Childhood Intervention (ECI) services offered by the state, medical evaluation by ENT (Ear, Nose, Throat) physicians, audiologists (hearing specialists), or specific therapists like speech and language pathologists. They will guide you for further evaluation.

The Children’s Hospital of San Antonio has a team of outstanding pediatric ENT specialists, audiologists, and therapists who work together to give your child the best possible outcome when a child is hearing impaired or has difficulty communicating. Call 210.704.4708 for information or an appointment.

Jaxson’s Journey

By Christine De La Rosa, Jaxson’s Mother

On February 7, 2016, my son Jaxson decided he would enter this world. It was Super Bowl Sunday. When he was born the doctors and nurses asked me, “Did you know he was only four pounds?” I was in shock and had no idea he was so little.  

The doctor and nurses were talking while they examined him and told me they were going to take him to the NICU. His oxygen level was low. They also told me about his bilateral microtia which means both ears did not form on the outside and that he had a soft cleft palate. I don’t remember how I felt at that moment because it was all too much to take in.

I asked my doctor how this happened because I had two screenings for abnormalities done while I was pregnant and the results were negative each time. The doctor seemed to be in shock and only answered, “I don’t know.”

After meeting several specialists, the genetics doctor told me my son might have a syndrome but that he could not be sure until a DNA test was performed. It was all so overwhelming at that point. He was diagnosed with failure to thrive. Jaxson had to be fed differently because of his soft cleft palate, which put him at high risk for aspirating. He had his first surgery at 5 months to repair the cleft palate.  He was slowly gaining weight.

In November 2016, Dr. Scott McLean with the Genetics Clinic at The Children’s Hospital of San Antonio gave me the diagnosis: Cornelia de Lange Syndrome (CdLS).  When I asked Dr. McLean what I needed to do, he reassured me that I was already doing everything I could. Leading up to the diagnosis, the clinic staff had already provided great support and information about resources available for Jaxson. He was receiving speech, physical and occupational therapies, and seeing several specialists.

In May 2017, he came down with pneumonia because of his aspiration. The doctors recommended placing a feeding tube directly into his stomach. He had the procedure in June. That was the best decision I made for my son. His weight, motor skills, and overall health improved significantly.

He currently does not talk because of the microtia, but thanks to the hospital’s recommendations and resources, we became enrolled in the parent and infant program at the Sunshine Cottage when he was 3 months old.  He received a Bone-Anchored Hearing Aid or BAHA, since he is too young for a cochlear implant. When he turned 3, he was enrolled at the Preschool Program for Children with Disabilities at a San Antonio Independent School District elementary school. He will have future surgeries to reconstruct his ears and get cochlear implants when he is about 7 or 8 years old.

As a single mom, I often feel overwhelmed. I have a full-time job and an 11-year-old daughter. On my days off, I am usually taking Jaxson to an appointment. People ask me how I do it all and my response is, “I have to. It just comes to me.”  I have lot of support from my family.

Everything happens for a reason and God gave me Jaxson because he knew I was capable of handling his diagnosis.  He opened my eyes and my love for Jaxson is like no other.  His personality and character is so unique I am grateful every day that he is my son. 

I am on a CdLS Foundation group on Facebook, so I can say some moms have more on their shoulders then I do because this syndrome can be fatal.  Jaxson’s organs are all in good standing so I am beyond grateful and blessed that my son is healthy.

May is Cystic Fibrosis Awareness Month

Jeremy W. Stewart, M.D., Resident, PGY-2, Baylor College of Medicine

Martha Morse, M.D., pulmonologist, The Children’s Hospital of San Antonio; Associate Professor, Baylor College of Medicine

Cystic fibrosis (CF) is a genetic disease that affects many organ systems of the body. According to the Cystic Fibrosis Foundation Patient Registry, 1,000 new people are diagnosed each year and a total of 30,000 people in the U.S. are living with CF.

CF is caused by different mutations in a gene (CFTR) that makes a protein that helps move electrolytes (chloride and sodium) in and out of our body’s cells. When this process is not working correctly, the body produces thick and viscous secretions in the lungs, digestive tract, pancreas, and reproductive organs.

The disease is present when the person has two defective copies of the CFTR gene. A person can be a “carrier” of the defective CF gene, which means they have a defective gene but no disease. If two carriers have a child together:

• One in four children will have CF
• One in two children will be a carrier and not have CF
• One in four children will not be a carrier or have CF

Symptoms of CF include:

• Persistent productive cough
• Salty-tasting skin
• Lung infections
• Difficulty breathing or wheezing
• Growth problems
• Difficulty with bowel movements, often with greasy, bulky stools
• Infertility in males

People with CF require daily routines of lung treatments, digestive enzymes with every meal, vitamins, and regular monitoring to avoid becoming sick, as they are at a high risk of becoming very sick. CF requires a full health care team that includes multiple subspecialties and frequent appointments. In the past, people with CF lived short and troubled lives with frequent hospitalizations and early death.

Currently, all 50 states test newborns for CF. The Texas Newborn Screen began testing for CF in 2008. If the test is abnormal on the first or second newborn screen, a sweat test can confirm the diagnosis.

While CF remains a serious disease, recent advancements in medicine have provided promise for many. CFTR Modulator Therapy helps the protein transport chloride. The medication works for people with specific mutations, as different mutations cause different protein defects. There are currently three CFTR modulators for people with certain CFTR mutations: tezacaftor/ivactor (Symdeko), Ivacaftor (Kalydeco), and Lumacaftor/ivacaftor (Orkambi). A video of how Ivacaftor works, can be found here.

Currently, no cure exists for CF so the scientific community is continually developing new drugs and therapies to lessen its effect on the day-to-day lives of people with CF.

How do I get involved and help?
To find out more about local efforts to raise awareness about cystic fibrosis, visit www.cff.org/lonestar

The Children’s Hospital of San Antonio has a team of specialists who work to diagnose and provide treatments to children, adolescents and teens with cystic fibrosis. To find a pediatric pulmonologist, visit www.chofsa.org/findadoc.

Asthma and Allergy Awareness Month

Araceli Elizalde, MD, Immunology Director
Allergy, Immunology, & Rheumatology, The Children’s Hospital of San Antonio
Assistant Professor of Clinical Pediatrics, Baylor College of Medicine

May is Food Allergy Action and National Asthma and Allergy Awareness Month.

More than 50 million Americans suffer from environmental allergies and asthma.

Nasal allergies affect 10 percent to 30 percent of adults and up to 40 percent of children. Allergies can be seasonal, with symptoms brought on by sensitivity to pollen from trees, grasses or weeds, or to airborne mold spores. Sometimes, sensitivity to house dust mites, animal dander or cockroaches can trigger a reaction, called perennial allergic rhinitis.

An asthma attack is often triggered by allergens such as pollen, dust and animal dander, certain drugs and food additives or respiratory infections. Although the exact cause of asthma is unknown, many treatments are available to control this chronic inflammation of the airways in the lungs.

In addition, two recently released large-scale studies of food allergy prevalence estimates 32 million Americans have food allergies. This number is more than double what we previously believed, reinforcing that food allergy is a problem of epidemic proportions.

Those suffering from allergies and asthma should be able to feel good and safe. No one should accept less.

In response to these alarming statistics, and in an effort to raise public awareness of the risks faced every day, The Children’s Hospital of San Antonio offers these tips as part of Food Allergy Action and National Asthma and Allergy Awareness Month.

Here are some tips to help families living with allergies and asthma:

• Limit exposure or avoid the allergens that cause your allergy and asthma symptoms.
• Keep windows closed during pollen season, especially during the day. Take a shower, wash your hair, and change clothing after working or playing outdoors.
• To prevent asthma flare ups, stay away from smoke, dirt, gases and triggering odors.
• If you suffer from food allergy, read the label every time you buy a product, even if you’ve used that product before. Food ingredients in any given product may change.
• Cooking at home lets you prepare anything according to your food needs, so you can use healthier and safe ingredients that are familiar to you.
• Hand sanitizer does not remove food proteins, always use soap and water or wipes to clean hands or surfaces.
• Epinephrine is the only treatment for a severe allergic reaction known as anaphylaxis. Work with your child’s health care team on how to recognize the signs and symptoms of anaphylaxis and how to treat it.
• Pay close attention to new food allergy treatment trends. Prospects for safe, effective treatments to prevent food allergy reactions have never been brighter, and the field of food allergy research is poised to deliver on its promise to find a cure.
• See an allergist for any allergy and asthma symptoms, to learn how to avoid potential triggers and for treatment recommendations.

Allergies and asthma are serious diseases. Misdiagnosis and inappropriate treatment can have serious health consequences. Board-certified allergists can perform allergy testing and treat allergic diseases effectively so that people with asthma or allergies can lead a healthy, active lifestyle. If your child needs to see a pediatric specialist for the diagnosis and treatment of allergies and asthma, please call 210.704.2187.

References:

Home

https://www.foodallergy.org

https://www.community.kidswithfoodallergies.org