You all have been amazing when I have asked for help with my students, so I have another question. I have just evaluated a 3 ½ year old who was diagnosed at birth with Moebius Syndrome. Although I have had difficulty finding information about this syndrome, I managed to find an article Sara Rosenfeld-Johnson wrote that was extremely helpful and plan to follow her recommendations. My main concern right now is that a Haberman bottle was used to feed him, so now he clamps his teeth down on the flute and straw when I try to work with him. Is there any tool that is beneficial to inhibiting the teeth biting and promoting the normal suck and swallow and blowing? And if you have any other references for oral motor therapy related to damage to the 7th cranial nerve I would appreciate it. THANK YOU!!!!!! Thank you for the compliment and the question. I have worked with Sara and the Moebius population for the past 10 years and hope I can help with your question!
The clamping of the teeth is common since the primary problem we are working with is the inability to close the lips. So this is very common with most of the children and adults we work with. The key initially is to make the mouthpiece big enough to fit into the current lip opening. To determine if this is even appropriate to begin, you need to know if the client has paralysis or paresis. If you have seen any upper facial movement, flutters or twitches then you are looking at paresis and working on these skills may improve lip and cheek function. Here is a basic outline of what you might do with straw and horn blowing; both a part of a complete oral placement program that would also address any deficits in jaw stability as you are trying to achieve lip from jaw dissociation (I can give you more information on that if you would like):
1st: Begin by using the TalkTools vibrator and trimmed Toothette (the vibration is the key) under the upper lip and in the cheeks to provide sensation to the muscles. This would be done for 1-2 minutes and therapy activities would then follow.
2nd: Horn Blowing: Measure the lip opening when the child is in a resting lip posture, or if possible, trying to close his lips on command. You may begin with Horn #1 if they have the breath support and skill but also may want to start with the Alex Tub Flute (TalkTools has begun carrying them but you will need to check availability). This horn is easier to blow and has a wider mouthpiece. If you use Horn #1, wrap the tip of the horn in medical tape several times until the mouthpiece measures the lip open position. This will allow you to then support the jaw with your non-dominant hand and place the horn between the lips, rather than the teeth (the pre-requisite is that they know to exhale on command). Using the TalkTools Progressive Jaw Closure Tubes is also helpful in teaching this skill. As they meet the criteria, you can unwrap the horn mouthpiece one time and repeat until you have removed all the tape. The lip, assuming there is the ability to gain movement will follow with practice.
3rd: Straw drinking: I would suggest starting with the Honey Bear with Flexible Straw. There is a program Sara and I wrote several years ago called the Ice Sticks Program that has a technique using a syringe to teach a client to retract the tongue and swallow. This same program can also be used with Moebius Syndrome with the goal of teaching the child to “slurp and swallow”. You can use the Honey Bear following the same principles as the syringe technique to place the straw in the buccal cavity, squeeze and then tell the child to slurp. You would need to ensure he is not biting on the straw (support with your non-dominant hand if needed) and that the tongue is retracted (you will often see the tongue protrude between the central incisors as an additional compensatory strategy if tongue retraction is difficult for them. As they learn to “slurp” the liquid you have squeezed into the cheek, it activates the cheek, lip and tongue muscles, eventually leading to the child's ability to “slurp” the straw on their own. There are several steps to teach this and I’m happy to share more detail if you need it as well!
I would also encourage you to visit the Moebius Foundation website. Our past presentations should be available for you to view and may be helpful as well.
I hope this gets you started! Clients with Moebius Syndrome are a joy to work with once you have the appropriate tools and starting point! We’ve had great success with many individuals using these techniques!
Renee Roy Hill, MS, CCC-SLP