The Vocal Point

Beyond the Growth Chart

Advocating for yourself can be hard but advocating for your child can be even harder. As cliche as it might sound, I’ve never truly understood “go with your gut” until I became a mother and doctors constantly dismissed my concerns with my children.

I am going to share my story in hopes that this helps other parents advocate for their child. My son had a tongue tie and lip tie release not too long ago. My son did not breastfeed because he had a very hard time latching. He was on formula and he was growing beautifully. He was ahead of the growing curve-BUT he was already a big baby (almost 9lbs)! After starting on formula, my son would spit-up A LOT! While I know spit-up is normal in infants, we would go through 4 or 5 outfits a day! Because he was not “losing weight”, the pediatrician was not concerned. My son also struggled with different bottles nipples and was only able to use one type of bottle and nipple. The flow from most of the bottle nipples were too much for my son to handle.

We began solids at 6 months of age. And when I tell you my son struggled with solids it was painful to watch! He had an overactive gag reflex and lost a lot of the food because of his open mouth posture. I decided to give him some time because maybe he wasn’t ready for solids. Around this time, I was taking a pediatric feeding course and I learned about tethered oral tissues(TOTS). My son was presenting with the symptoms of a possible tongue tie and lip tie. I mentioned the concerns to the pediatrician. Once again, I was told not to worry because my son was not losing weight. I decided to find an ENT on my own. Although the appointments was weeks away- I was excited to get some answers. The day arrived and I was so disappointed. I expressed all the my concerns to the ENT- from the bottle drinking, the feeding and trouble sleeping. He completely dismissed my concerns. He barely looked into my son’s mouth because my son was crying during the appointment. He told me if my son wasn’t losing weight I shouldn’t be worried. I was furious! How could he ignore my concerns? Was my son suppose to eat pureed foods for the rest of his infancy and into toddlerhood? What about his trouble sleeping? His snoring? His coughing after drinking?

After the appointment, I decided to continue to look into his mouth myself. My son had a lip tie that came down in between his teeth. My son’s tongue had a snake like appearance. I was not going to take that doctor’s word for it. I did some research and asked around. A friend highly recommended Dr. Grunstein. I immediately called to make an appointment. This time I had to wait months for this appointment. During this time, my son’s symptoms and functionality didn’t improve much. He continued to have difficulty with solids, he gagged and choked easily, he was coughing after his drinks. My son’s mouth was ALWAYS open. He continued to have trouble sleeping. The appointment finally came and I was so nervous. I wasn’t sure what to expect but I was pleasantly surprised. Dr. Grunstein listened to all my concerns and asked additional questions. He explained my son was presenting with a symptomatic posterior (back) tongue tie and confirmed my son’s lip tie. The doctor explained that not every ENT was comfortable with this diagnosis including performing surgery. He referred me to another specialist- someone who I knew about! I booked the appointment to see Dr. Siegel and he was also amazing. We discussed my son’s case. He showed me the photos of my son’s mouth and we discussed the pros and cons of having the revision. Given my son’s symptoms and how it was impacting his feeding skills (despite my son not losing weight), I decided to move forward with the surgery. I made sure to complete the aftercare exercises and keep my follow-up appointments.

My son is doing much better. We went to see an SLP and decided to hold off on performing an instrumental assessment (because of his coughing). As far as his feeding skill, my son is not gagging as much and showed improvement with his chewing skills and swallowing solid foods. He is actually eating more and trying more foods. He will sometimes cough but he is not losing food from his mouth. Prior to his revision, my son was using his fingers to push the food back into his mouth. Regarding his breathing and snoring, his airway is clear but he will most likely need myofunctional therapy in the future. We still have a long road ahead.

I write this to emphasize the importance of advocating for your child. You know your child better than anyone else. Follow your gut! Get second opinions and have your child be seen by a specialist. I hope this story helps someone who might be going through the same thing.


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