Dear Lori,

My child who is 2 1/2 years old was diagnosed with Autism and Beckwith Wiedemann at 1 1/2 and is receiving Early Intervention and making great improvement.  His greatest issue is feeding: he eats all foods as long as they are smashed; when he bites into anything his tongue kicks the food back out and there is no chewing.  We have had endless visits to specialists and doctors but no one can correctly diagnose his feeding issue. I've been through numerous Feeding/Speech Therapists through EI and no improvement has happened and a lot of unanswered questions remain.  My OT suggested I reach out to you and do some networking and so I hope you can help and lead me in the right direction because I feel as if there are not enough resources for parents who have children with feeding issues. Thank you

I would be happy to try to help you with your son's feeding issues.  Children with Beckwith Wiedemann syndrome typically do not have good tongue mobility.   My experience has been that mobility through the lateral borders of the tongue and tongue tip are reduced so children use a protrusion retraction pattern to compensate.  If you think about eating solid foods, you take a bite and use your tongue tip and the lateral border of your tongue to move the food back to your chewing surface (about where your first molar inserts).  Food is then stabilized between the lateral border of your tongue and your cheek as you chew.  If the bolus of food is large you move the food to the opposite lateral molar ridge. When the food is well enough broken down you get sensory input to swallow.  Given the size of the lingual musculature in relation to the size of the oral cavity a true rotary chew pattern is difficult to facilitate. However, I have had children who can get increased lateral tongue movement.

In addition, many children with Beckwith Wiedemann have low muscle tone, and reduced sensory awareness which impacts breaking down food and knowing when it is adequately broken down for swallowing. When you are brushing your son's teeth you can stroke the side of the tongue from back to front (4-5x on each side) to help facilitate mobility through the lateral borders. You can also try introducing a Cheerio size piece of food on the side of your son's mouth (about where his first molars are) to see if he is better able to chew the bolus.  I teach a two day sensory motor feeding class which is available live and in self study.  I also have a feeding book that can help. These resources will help you with pre-feeding strategies which can facilitate the motor skills your son needs for safe effective nutritive feeding. You can also look on the website to see if there is a therapist in your area who can evaluate your child and plan a program. 

Best,

Lori Overland MS CCC-SLP, C/NDT

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