‘Much More Than His Diagnosis’
Opitz G/BBB syndrome may be rare, but so is Nathaniel
Forget that Nathaniel Adams has a rare genetic diagnosis called Opitz G/BBB syndrome. That’s not who he is.
His mom, Crystal, will be the first to tell you her little boy is just "a really cool kid."
“He is very smart. He loves dinosaurs and wants to be a paleontologist when he grows up,” Crystal said. “Nathaniel is more typical boy than not. He likes to run, jump, climb, be gross and tell silly jokes. He likes to have fun.”
So with his love of dinosaurs and all things that comes with being a boy, it makes sense that Dinotrux, swimming and an assortment of popcorn salts have helped with his treatment in speech therapy.
Nathaniel was born on April 22, 2010, via C-Section following his mother's water breaking and labor not progressing at 36 weeks. He stayed in the Neonatal Intensive Care Unit (NICU) for 3 weeks.
Nathaniel was nasogastric fed (a tube is placed through your nose into the stomach) for a while in the NICU due to being a "sleepy" eater. He also has a history of gastrointestinal reflux. In addition, he has low muscle tone which requires more energy to use his oral motor skills for saying sounds.
Nathaniel received early childhood intervention services until he was about 15 months old. His gross and fine motor skill development were delayed as well as speech. He also struggled with chewing certain foods and would either gag or vomit to get the food out. Crystal said, “Those skills along with every other milestone have developed at his own pace and in his own time. He can't be rushed.”
In addition to seeing Mary Kukolich, M.D., in Genetics, Nathaniel receives speech therapy and occupational therapy at Cook Children’s. Nathaniel’s pediatrician and gastroenterologist (Carrie Jones, M.D., and Jane Keng, M.D., respectively) are also with Cook Children’s.
Along with his stint at the NICU, Nathaniel received eye muscle surgery and hypospadias repair at the medical center.
“Our experiences with Cook Children's have always been positive! The doctors and staff not only do their jobs with the highest of quality but they also care about our baby, and that means the world to us,” said Crystal.
Before coming to therapy, Nathaniel was extremely anxious especially in social situations with his peers. Nathaniel's family did not feel that public school was the best fit for him so they chose to homeschool him.
When Nathaniel was asked what new things he learned in therapy, he stated he learned how “to do sounds,” to chew foods and how to eat new foods. He also said he learned to use arrow eyes.
“You have to look at the person when you are talking to them.” Nathaniel said that he didn’t look at people because he was afraid. He was afraid like Click Clack (a character in the show Dinotrux). “He is always afraid. But now I am like Revvit. He’s not afraid and I’m not afraid anymore.”
Nathaniel’s mom, Crystal, reported that he made coming to speech and feeding therapy sound so fun that his cousin wanted to come too.
“Nathaniel loves to go to therapy,” Crystal said. “His cousin asked him what he does at therapy. He said he plays fun games with his friend Mrs. DeeDee and they "do sounds" and that he eats fun foods with his "friend" Mrs. Kathy. Since starting therapy he has grown so much. His sounds have improved greatly. His confidence has increased, and with the help of those handy popcorn salts he will eat almost any vegetable, except green beans. He says nothing can make those taste better. “
So what do popcorn salts have to do with therapy? When Nathaniel first started feeding therapy, he typically looked at a new food and stated it’s “yucky.” One way he began tasting new foods especially vegetables was to season them with a variety of popcorn salts. Nathaniel was discharged from feeding therapy in March.
Crystal reported that meal times are so easy and enjoyable now that Nathaniel is willing to eat a wider variety of foods. Nathaniel said he likes to “make new recipes” with his mom. Tears come to his mom’s eyes when he asks for seconds of a food he has just tried.
One day while driving in the car, Nathaniel asked his parents if they would help him make friends. His parents decided to enroll him in swimming lessons which would not only be a good way to make friends but also a good activity to build muscle strength and endurance. Now when he comes to speech therapy, he tells his therapist all about his friends. His mother reported that he has so much more confidence now to talk to people and they understand him. As a mother, it’s nice to go somewhere and watch your child be excited to go play. This is something that Nathaniel never would have done before participating in therapy.
According to Nathaniel’s mother, coming to speech and feeding therapy has built his confidence, decreased his anxiety and made mealtimes more fun. However, the most important result of coming to speech therapy is Nathaniel’s increased confidence and desire to make friends.
“Nathaniel enjoys eating now! And he has so much to say, thanks to his speech therapists he is able to say what's on his mind and be heard and understood as well as have the confidence to talk to other kids and make friends,” Crystal said.
About the Author
Kathy Soland is a speech pathologist at Cook Children's Rehabilitation Clinic in Hurst. Speech and language pathologists evaluate, treat and develop programs and activities to help children with feeding and swallowing, articulation, voice and hearing loss, to name a few. If you child's condition affects hearing, speech and/or language, you may be referred to one or a combination of these therapists. Learn more about audiology and our rehabilitation services. To learn more about making an appointment, click here.