Ask a Therapist: Beckwith-Wiedemann Syndrome and Tongue Protrusion

Posted by Deborah Grauzam on

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

Ask a Therapist Beckwith-Wiedmann Syndrome BWS Feeding therapy Feeding workshop Lori Overland Oral Placement Therapy tongue lateralization Tongue Protrusion tongue surgery

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Comments


  • Hi! wanted to follow up on the case mentioned by the therpiast who talked about a kiddo of her that is 12months/isn’t able to chew. I am working with a kiddo like this right now and would like to know what is recommended? Surgery also not recommended and not sure where to go from here to help him chew.

    Audrya Houde on
  • Hi there,
    I am a fairly new SLP still and just received my first exposure to a student with BWS. The student is 15yo and is currently on home-hospital instruction. Feeding is not part of his IEP, but he does have a functional communication goal. I was hoping for guidance on how to approach this student and how to help him best.
    Thank you for your time.
    Aida

    Aida on
  • Hi Janelle, My name is Lori Overland and I teach the feeding classes for Talk Tools. I have gotten a few questions about children with Beckwith-Wiedemann Syndrome this month! I am wondering if you have taken the two day sensory motor feeding class? If so, these are the exercises which would be helpful. First,I would recommend focusing on cheek stability to support sucking, swallowing, stabilizing a solid bolus and chewing (start with the cheek stretch). Then, I would work at chewing hierarchy level #1 with the red chewy tube. This is really important because this little one will benefit from therapeutic feeding techniques and you need to make sure she has a strong lateral chew. I would also do a lateral tongue massage …as most kids with BWS do not use the lateral borders of the tongue or tongue tip…..and this is a “have to” to facilitate oral transport of food. It will be important to use therapeutic feeding techniques. All solids should in cheerio size pieces (or slightly smaller) and placed on the lateral molar ridge (about where the first molars will insert). If you have not taken the two day sensory motor feeding class…I think it would be very helpful.

    Good luck with this little one!!!!!

    Lori

    admin on
  • I am also an SLP working with only my second child with BWS. She is 12 months old and is able to retract her tongue for short periods. In the past, she could manage soft solids because she could “tongue mash” against her palate and could bite off crackers between her tongue and alveolar ridge. Now that she is gaining teeth, how can we continue to encourage chewing skills? Surgery is not planned for this little one as she is expected to grow into her tongue. I would appreciate any ideas you could give me. I will be attending a Talk Tools conference at the end of February in Columbus, Ohio.
    Thanks, Janelle

    Janelle on
  • Hello
    Please help and share
    for raising awareness and building support network for BWS children, adults and families around the world

    https://www.facebook.com/events/596844320463899/

    https://www.facebook.com/groups/400692410112333/

    https://www.facebook.com/groups/201677519931954/

    https://www.youtube.com/channel/UCxf2KQZ-GRgZIOlRns89j3A

    https://www.diseasemaps.org/en/beckwith-wiedemann-syndrome

    Best wishes and thank you in advance

    mm on


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