Tagged "Haberman feeder"

Ask A Therapist: 3 year old with Moebius Syndrome

Posted by Deborah Grauzam on

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!

Thank you,

Renee Roy Hill, MS, CCC-SLP

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Ask a Therapist: Complicated Premie with Feeding Issues

Posted by Deborah Grauzam on

I am treating a beautiful, 4 month old baby born at 29 weeks gestation. Meyer was immediately intubated and sent to NICU where he experienced bouts of apnea. Meyer was given feeds on 2/3 for 5 days with good suck and intake, but subsequently required surgery for Necrotizing Enterocolitis (NEC - a gastrointestinal disease, that involves infection, inflammation and destruction of some/all of the bowel). Successful surgery was completed. While on PO feeds at hospital Meyer had uncoordinated swallow/suck with sputtering and bradycardia (i.e. bradys). An oral pharyngeal motility study (OPMS) demonstrated aspiration on both thin and thickened liquids. Discharge report indicated NPO status. Meyer's discharge recommendation: 5CCs of thin liquid each day orally and remainder of nutrition via naso-gastric tube. He currently receives 85% daily feeds via an NG tube, but when we attempt to increase his oral feeds he shows bradycardia. After trials with a medium flow Playtex nurser, he was very successful with the Haberman feeder using thickened breast milk for a couple of weeks with no Bradys, mom paced him from fast to medium flow as he got organized with the feed. We are thickening the breast milk with rice cereal (pediatrician and I felt giving a preemie rice cereal early was the lesser evil to aspirating on thin liquids). He saw a renowned, pediatric ENT at Emory University due to stridor and was diagnosed with fairly benign laryngomalacia – she feels it will disappear and is not impacting his swallow -- she scoped him, looked at his swallow without liquid and said it looked "fine.”

In the past week it has changed – he has increased Bradys. Pediatrician and mom think it is due to increased GERD. Last week, he went from 40 CCs via the Haberman (we limited amounts to work him up to accept it without Bradys) 3 times per day, to less than 20CCs at each feeding and he "falls asleep" during feeds. I think he is becoming cognitively aware of the GERD and refusing to suck. His mom did a trial feeding on the breast yesterday and he sucked well. I'm thinking maybe he has not learned that the breast causes pain from GERD. He does have some decreased oral motor skills with his jaw and cheek, but he is able to suck a pacifier well. We are doing O-M exercises daily. My thought is to maintain the O-M exercises and treat the GERD in the hopes we can get it under control and get him to eat more. Would love any thoughts you might have – poor baby has lots going on.

Thanks, Jennifer

Hello Jennifer. He does sound like a complicated little guy, and you have done a good job with him. I understand that sometimes you have to make a decision about using rice cereal as the lesser of two evils...but I am always concerned about motility (and allergies) when thickening premies' feeds. Have they explored possible allergies? Is the baby being bottle fed with the NG tube in? This MAY account for increased reflux. Is mom working with a lactation consultant? There MAY be less reflux with breast feeding than bottle feeding. Have they tried a lactaid? If the baby is sucking well on the breast...this may be an idea. In what position are you recommending feeding him? Feel free to run the pre-feeding exercises by me if you want another set of "eyes.”

Lori Overland

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