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

Hello! 

 

My name is Yael and I have a patient who is 18 months, has low tone in the oral area, likes a lot of sensory input inside the mouth but won't suck on a straw or drink from a cup. He only drinks from a baby bottle and kind of bites down on it. How can I start working on his suckling skills so I can work with the straws and all the other tools?

 

Thank you!

 

Yael

Elizabeth Smithson, MSP, CCC-SLP is a Speech-Language Pathologist who has over 10 years of professional experience working with infants, children, adolescents and adults. She earned her Master of Speech Pathology at the University of South Carolina. Liz is also a Level 5 TalkTools® Trained Therapist. She has received specialized training in Oral Placement Therapy, Speech, Feeding, Apraxia, Sensory Processing Disorders, and PROMPT©. Liz works with clients with a wide range of disabilities including Cerebral Palsy, Down Syndrome, and Spinal Muscular Atrophy. She works through her own private practice Elizabeth Smithson Therapy, LLC in the home setting and in the TalkTools® office in Charleston, SC.

Hi, 

 

My son is 17 and has Autism. He has received speech services since he was 2.8 months old. The most successful therapy has been PROMPT for him. Currently he has 3 therapists working with him. One specializes in PROMPT, the other specializes with his talker device and the other is on the team. My son rarely uses his talker which he acquired about 3 years ago. He basically uses one word to meet his wants.  Unknown people can't understand him. He has hypotonia. He drops off the ending of his words. We recently (Fall of 2015) brought back PROMPT therapist as his speech was regressing with traditional imitative speech therapy. He was saying the /sh/ sound for the /s/ sound and we were having trouble getting the retraction.  Would the horn program help and if so how? And could I do it as a parent? I use PROMPT with my son to correct the /s/ as in yes, but I am not using PROMPT extensively as the SLP is in therapy.

 

Thanks for your advice.

 

Gina

Hi Gina,

I am a speech language pathologist who is trained in Prompt as well as TalkTools. I often use the two together for many of the patients I see. I feel they are two approaches that often help my patients with difficulty with verbal communication. I think it is great that you are considering pursuing both for your son. I would encourage you to try to find a TalkTools trained therapist in your area to evaluate your son and create a program plan for you to follow if that is available. You can do it all yourself but you would need to watch the video A Three-Part Treatment Plan for Oral Placement Therapy and follow the directions included in your kit. The horns would work on tongue retraction as well as the Bubble Kit and straw drinking. I often use these activities together with patients working on tongue retraction.

Please let me know if you have any other questions.

I am happy to help.

Thanks,

Liz

Elizabeth Smithson, MSP, CCC-SLP is a Speech-Language Pathologist who has over 10 years of professional experience working with infants, children, adolescents and adults. She earned her Master of Speech Pathology at the University of South Carolina. Liz is also a Level 5 TalkTools® Trained Therapist. She has received specialized training in Oral Placement Therapy, Speech, Feeding, Apraxia, Sensory Processing Disorders, and PROMPT©. Liz works with clients with a wide range of disabilities including Cerebral Palsy, Down Syndrome, and Spinal Muscular Atrophy. She works through her own private practice Elizabeth Smithson Therapy, LLC in the home setting and in the TalkTools® office in Charleston, SC.

Dear Lori,

My child who is 2 1/2 years old was diagnosed with Autism and Beckwith Wiedemann at 1 1/2 and is receiving Early Intervention and making great improvement.  His greatest issue is feeding: he eats all foods as long as they are smashed; when he bites into anything his tongue kicks the food back out and there is no chewing.  We have had endless visits to specialists and doctors but no one can correctly diagnose his feeding issue. I've been through numerous Feeding/Speech Therapists through EI and no improvement has happened and a lot of unanswered questions remain.  My OT suggested I reach out to you and do some networking and so I hope you can help and lead me in the right direction because I feel as if there are not enough resources for parents who have children with feeding issues. Thank you

I would be happy to try to help you with your son's feeding issues.  Children with Beckwith Wiedemann syndrome typically do not have good tongue mobility.   My experience has been that mobility through the lateral borders of the tongue and tongue tip are reduced so children use a protrusion retraction pattern to compensate.  If you think about eating solid foods, you take a bite and use your tongue tip and the lateral border of your tongue to move the food back to your chewing surface (about where your first molar inserts).  Food is then stabilized between the lateral border of your tongue and your cheek as you chew.  If the bolus of food is large you move the food to the opposite lateral molar ridge. When the food is well enough broken down you get sensory input to swallow.  Given the size of the lingual musculature in relation to the size of the oral cavity a true rotary chew pattern is difficult to facilitate. However, I have had children who can get increased lateral tongue movement.

In addition, many children with Beckwith Wiedemann have low muscle tone, and reduced sensory awareness which impacts breaking down food and knowing when it is adequately broken down for swallowing. When you are brushing your son's teeth you can stroke the side of the tongue from back to front (4-5x on each side) to help facilitate mobility through the lateral borders. You can also try introducing a Cheerio size piece of food on the side of your son's mouth (about where his first molars are) to see if he is better able to chew the bolus.  I teach a two day sensory motor feeding class which is available live and in self study.  I also have a feeding book that can help. These resources will help you with pre-feeding strategies which can facilitate the motor skills your son needs for safe effective nutritive feeding. You can also look on the website to see if there is a therapist in your area who can evaluate your child and plan a program. 

Best,

Lori Overland MS CCC-SLP, C/NDT