I need your advice for a client with Treacher Collins Syndrome. The child has had his left lip and palate repaired, his face & skull are severely deformed. We have been doing OPT for 1 year: greatest improvement is in blowing (from not able to blow to Horn #4, Bubble Bear 1 feet; he can do depressor press with 14 coins and 6″ button pull, /m/ sound ok but not /b/; many sounds backing as /g/, talking in simple sentences now).

His jaw is very problematic: he cannot open his jaw to more than 4-5mm, I let him bite on straws of different diameter, gum pressed flat and wrapped with gauze, Bite Block #2 held on first molar area. He’s on oxygen mask at night, his doctor said he’ll have us do OPT for half a year, and if he still can’t open his jaw, he’ll consider cutting his tongue out to prevent sleep apnea. Mommy is unwilling to let doctor cut his tongue nor open his trachea, and so she asked if I can train him to stick out his tongue so he has more space in his oral cavity to breathe? Can you give me some advice?

Thanks, Louisa

Hi Louisa. Have you tried using the Progressive Jaw Closure Tubes? Start with the smallest and have him bite and breathe through. When he can do this as you count slowly to 50 and without any compensatory posturing, go to the next larger tube. In this way you will see if the problem is muscular or structural. If it is muscular, then by going through the hierarchy to the largest one you should see some good results. If it is structural (boney, skeletal) then at one point he will not be able to progress.

To teach him to stick out his tongue, you can then go back to the smallest tube and ask him to push his tongue forward into the tube numerous repetitions. That will give him the jaw from tongue dissociation you are looking for.

Best

Sara Rosenfeld-Johnson