I would like to share two handouts providing information on feeding issues in conjunction with congenital syndromes specifically Pierre Robin Sequence, Noonan syndrome, Turner Syndrome, Prader-Willi Syndrome, and Trisomy 21. I share this for several reasons; as an educational tool which provides general information, highlights web support, and lists current references.
Children should always be assessed individually and treatment tailored to the needs of the client and family. Having a diagnosis does not define any of of our clients and we know that there is great variability in developmental level, cognitive function, medical needs, and feeding skills of the kids we treat. We have learned so much from our families many of whom attend specialized conferences and interact with other families through support groups and share with us what they have learned.
Some congenital syndromes have a higher incidence of feeding and swallowing difficulty which could range from oral skill coordination and progression, difficulty moving to solid foods, aspiration, oral pharyngeal coordination, GI issues, or growth concerns. I hope this is a helpful resource.
Wow, all this information in a digestible- ha ha – easy-to-access format is fantastic, Krisi; definite additions to our resource files. Thank you!
I especially enjoy your comment about variability within a dx. Careful observation and analysis of presentation, difficulties, and abilities in the context of a dx is crucial to identifying the most effective strategies to employ. Also, the family context.
For example, my most recent pt w Turner Syndrome had a mosaic version and was a champion breast feeder. Also: she was the youngest of four and at 2 1/2, w a very strong personality, ran the show. Also: extraordinarily bright parents who didn’t mind when she refused or pushed away. So, she had a functional PFD: breast fed exclusively, therefore did not advance normal OM skills. I had to tread so lightly and provide information, strategies that aligned with the parents’ priorities and lifestyle. Luckily, all the sibs were homeschooled AND very loving, supportive w the youngest. Tx involved snack time with the siblings and everyone held a dry spoon and pretended to eat. Everyone had a mini dry cup and pretended to drink. Gradually we moved on to small amounts of smooth purée, accepting drops of water on the rim of the cup, dissolvable crumbs, etc etc etc. Simultaneously, Dad and the sibs focused on the strategies at home when Mom was out doing errands, thereby removing the child’s demand for breastfeeding. It took about 8, 10 months to bring the pt up to age-appropriate chewing and cup drinking.
Hope this story helps others in some way,
Sally
Thanks for sharing Sally! One of our families with a child with Noonan’s syndrome shared some new information about GI issues and Noonan’s. What looked like GERD was actually something else. It helped us tailor our treatment to this child. There is also an article published on Noonan’s and PFD as well.
Krisi
thank you!!!