Ask A Therapist: Tongue Tip Elevation in Moebius syndrome

When people need help with therapy or products, we put TalkTools® Instructors to work and then publish the exchange for anyone in the same situation to get help, too. This question is from Danielle, by Facebook message.

Hello,

I was wondering if you could possibly help me. My six-year-old son has Moebius syndrome and recently had facial reanimation surgery. We have been doing TalkTools therapy for years and love it. We do a lot, from the Z-Vibe to Chewy Tubes to the horns! We have him try to follow the Z-Vibe with his tongue, but I can’t get his tongue to lift up. My question is: how can I help my son improve tongue movement? He has twelfth cranial nerve palsy, and his tongue has become so much stronger with therapy, but tongue tip elevation is still so hard for us. Any tips? Thanks so much for your help.

Danielle

Hi Danielle,

Here are some questions that may help us think about why he may be having difficulty. When we are looking for tongue tip elevation we need to know first if he has jaw stability, tongue retraction and tongue tip lateralization skills first; these are prerequisite movements we look for. If you are unsure of any of the terminology let me know!

1. Does your son get any lateral movement? If so is he getting lateral movement to both sides? What activities do you see this movement in?

2. Can he chew on his back molars and hold the food there? Do you see his tongue move toward the food as he chews? Does this look easy for him?

3. Can he drink from a straw with tongue retraction? (Or does he protrude his tongue forward)

4. Have you done the Jaw Grading Bite Blocks so we know that he has adequate jaw stability as well?

If you’d like to send a quick video clip doing some stimulation of his tongue I may be able to see something.

All questions that may help us get a “why” answer and maybe a plan! Also, if you haven’t already, you should read this article by Sara Rosenfeld-Johnson about Moebius Syndrome. I look forward to hearing from you and helping any way I can!

Renee Roy Hill, MS, CCC-SLP

Thank you so much for replying, I appreciate it more than you know. My son does have some lateral movement, but it is limited. He uses his fingers so much to move his food to his back molars and has always been a messy eater. When he drinks from a straw his tongue protrudes forward as well. Thank you for taking the time to help us.

Danielle

He still needs help with tongue retraction and lateral movement before working on elevation. He is not yet ready to work on elevation. Good luck with everything and let us know if you still need our help!

Renee Roy Hill, MS, CCC-SLP

Renee Roy Hill, MS, CCC-SLP has provided therapeutic assessments and program planning for adults and children with oral placement, feeding and motor speech deficits for over 17 years. She is the owner of Crossroads Therapy Clinic in New Braunfels, TX and a member of the TalkTools® speakers bureau. Renee has been an invited speaker for ASHA state conventions and has received specialized training in speech/oral-motor/feeding therapy, Apraxia, sensory processing disorders, Hanen Courses, NDT training, TAMO therapy and PROMPT. She is the creator of the TalkTools® Schedule Board Kit, co-author of Ice Sticks, and author of the TalkTools® Apraxia Program.

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