Tagged "Down syndrome association"


Ask A Therapist: Persons with DS have larger tongues?

Posted by Deborah Grauzam on

Hi,

I work for a not for profit helping connect families to community resources. I just attended an appointment with a mother and 3 month old infant with Down Syndrome at the child's Family Physician's office. When the mother made the statement that she feels like her child is choking on its tongue and asked if this would change, the doctor told the mother that persons with DS have larger tongues and hopefully as her child grows his mouth would grow. 

​***This is just not true. Low muscle tone may make the tongue appear to be enlarged but tongues of people with a diagnosis of DS are not larger than the typical population. If this child is choking it may be secondary to low muscle tone, the insertion of the tongue, or inability to coordinate suck, swallow and breath. Starting a muscle based program from birth will make a difference. Feel free to look at the resources on the TalkTools website, particularly the DS feeding class, at this point.***​

The mother also raised a question about her child's head shape and if it would change (there has been a referral for a helmet consult and a request for referral for PT that the PCP does not want to make until after the helmet consult). The PCP told the mother that it may or may not change and the PCP associated the child's head shape with the child's diagnosis of DS. How can I better educate this mother about this? I am beside myself. Is there not information that states otherwise?

​***I am not an expert in head shape...however some babies with DS do have some asymmetry or a flat back of the head. I have had a number of babies on my caseload that have successfully worn helmets.***​

Lisa

Lori Overland, MS, CCC-SLP, C/NDT

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Ask a Therapist: Down syndrome Program Plan

Posted by Deborah Grauzam on

Hi Lori,

I recently took your "Feeding Therapy: A Sensory-Motor Approach" workshop and it was great!!  In the past year I've completed the "Oral-Motor Therapy: Assessment & Program Plan DevelopmentDVD as well and started volunteering with the local Down Syndrome Association to practice what I've learned.

My current client is a 4 year old boy with Down syndrome who has tactile defensiveness, which I believe is secondary to having been through a 'feeding' approach that pushed more on him than his oral-motor skills could handle. Overall, he is low tone, with open mouth and significant tongue protrusion.  His current team has recommended a very expensive behavioral feeding program, which I don't believe will benefit him at this time.  He will currently only drink formula from a bottle, 6 times per day.  When he drinks from the bottle he is suckling with his tongue right out underneath the nipple, and he has been fed in a reclined bouncy chair. He is not able to drink from a cup as even thickened liquid is lost all over, and his tongue is still out under the cup rim.  He tilts the cup up and gets liquid on his top lip and inadvertently in his mouth.

We've figured out a seating position we can work with (in a booster seat - not the best, but all we have right now), but don't have an OT in the picture to make recommendations.  We started on a pre-feeding program to normalize sensory response, and, where he would not let anyone touch his face at all, he is now letting us do some facial massage, tapping (with hands and with vibration) and Gator kisses, and recently started putting the end of the Gator Jiggler in his mouth.  He will not yet tolerate any tools further inside his mouth than his lips, but we have started to get some lip rounding and tongue retraction when he puts the Gator Jiggler in his mouth.  He is also letting his Mom and I hold Horn #1 and he will blow on it 5 times at this point.

He is obviously still on the bottle at this point for nutrition, but his family and I are working towards lip closure, tongue retraction and getting his cheeks active.  The attempt with the honey bear was unsuccessful as too much liquid got squeezed into his mouth so he is now refusing it.  His parents report he can use the Straw #1 from the hierarchy to suckle and get liquids that way.

I'm really on my own right now, as there are very few therapists where I live that have been trained using these methods so I wanted to make sure I'm on the right path with him.  My goals are:  pre-feeding program to normalize sensory response and allow tools on his face/in his mouth, get lip-closure and tongue retraction, activate/develop his cheeks, and later start elongating the lateral margins of his tongue to get lateralization, and start with chewing hierarchy number 1.

Here are my questions:  1)  Am I on the right track, based on the little you now know about him?  2) Should I stick with the straw hierarchy, and not introduce the recessed-lid cup as too many things might be confusing?  3)  He has very limited different tastes in his diet right now, is it okay to introduce different tastes in liquid form, or will this interfere too much with our primary goal of getting into his mouth??  4)  Can I please get your recipe for natural thickener?

Thank you so much for any assistance/direction you can give me!

Hello,

Thank you for your email. I am impressed with both your assessment and your proposed treatment plan.  Given your description of his sensory motor skills I agree that a behavioral program is not warranted at this time. It sounds like you have made some initial gains which will allow you to access his oral musculature.  I think your priorities are massage, tap and tone, the cheek stretch, Mickey Mouse /m/, lateral tongue massage and chewing hierarchy level #1. If he is drinking from Straw #1, absolutely continue the hierarchy and do not introduce the cup and the straw at the same time.  You may try naturally thickened liquids such as fruit smoothies (yogurt, fruit and ice well blended) or stage 1 fruit purees thinned out with spring water.  You can also try adding club soda to the fruit puree to add the sensory input.  As for transitioning from liquids to puree. I would start with the mickey mouse /m/ in your pre-feeding program to develop the motor plan for spoon feeding, then work toward using the vibrating spoon with nothing on it to develop the motor plan for therapeutic spoon feeding. Then try liquids he tolerates on the spoon (I might start with water and work my way to a flavor)!!!! Thanks for sharing!

Good luck.

Lori Overland, MS, CCC-SLP, C/NDT

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