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!