Ask a Therapist: Nutritive Feeding for Charge Syndrome

Posted by Deborah Grauzam on

I have a 4 year old student with CHARGE SYNDROME. He has minimal intake and could be looking at a feeding tube if this declines any more. Mom is totally fighting with him (holding one hand with her mouth, the other with her non-feeding hand and then spoon feeding with the other!). Feedings take at least an hour to get adequate intake. Would love to pick your brain!

Hi Lisa, I would be happy to talk to you about your little one with CHARGE. I often see parents who are frantic to get their child to take adequate nutrition. In therapy, your goals should be to assess this child's sensory motor skills to support feeding and to work on the underlying motor skills to support safe nutritive feeding. I would also recommend consulting with a nutritionist to make sure this child is getting adequate nutrition. Perhaps you can look at a complete nutritional shake (something like Complete), so he does not need to be force fed, while you are working on sensory motor skill development. If this child is unable to get adequate nutrition by mouth, tube feeding may be a the best option. It often allows parents to relax, work on developing the motor skills for oral feeding and to enjoy mealtime with their child.

Hope this helps!

Lori Overland

Ask a Therapist Charge Syndrome feeding tube food intake Lori Lori Overland Nutritive Feeding oral motor exercises oral motor skills special needs child special needs parent spoon feeding tube feeding

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Comments


  • Hi there – just wanted to echo what was mentioned above about tube feeding – it allowed us to relax, knowing she was getting adequate nutrition while we worked on the myriad of things she needed therapy with in those early days. It really took the pressure off and it’s really not a huge deal though it seems like one if you’ve never had experience with it. My daughter (coincidentally pictured above on the left with the curly blonde hair from the CHARGE Syndrome Canada site) is now almost 15 and eats everything by mouth after having had a g-tube/pureed diet. Good luck!

    Lisa W. on
  • Lisa,

    Thanks for the comment and that is truly a great story to hear about your daughter! We wish you and your family the best!

    TalkTools

    admin on

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