A 6 month old baby with Beckwith-Wiedemann Syndrome was referred to me. This syndrome is new to me, and I have had a hard time finding good information. I know that macroglossia is present in most children with BWS. This baby’s tongue protrudes significantly. Most of what I have read says many require tongue reduction surgery. I am trying to figure out what to do for this child in terms of oral placement therapy (which is also newer to me). Would I need to wait until after the surgery (if done) has been completed? Do you have any suggestions?

Sincerely,

Gabrielle

Hello Gabrielle, I have worked with a few children with BWS over the years. Unfortunately surgery often creates as many problems as it solves. It does reduce the size of the tongue and improve a child’s appearance; however, with the cut through muscles, I have observed notably reduced sensation in the tongue. I do think both oral motor/feeding and oral placement/speech will help this child. I would specifically work on the lateral borders of the tongue…trying to get some lateral tongue, and tongue tip movement. Many of these children have reduced muscle tone and you will observe issues with the jaw, cheeks, lips etc. What are you observing in this child? Have you taken any of the TalkTools classes? Given the age of this child you would want to take the 2 Day “Feeding Therapy: A Sensory Motor Approach” first. It will definitely help you to evaluate this child’s motor skills for safe, effective nutritive feeding, and help you to plan a program. Then I would recommend taking “A Three-Part Treatment for Oral Placement Therapy.” I hope that will be a good start for you!

Good luck.

Lori Overland