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

I am treating a beautiful, 4 month old baby born at 29 weeks gestation. Meyer was immediately intubated and sent to NICU where he experienced bouts of apnea. Meyer was given feeds on 2/3 for 5 days with good suck and intake, but subsequently required surgery for Necrotizing Enterocolitis (NEC - a gastrointestinal disease, that involves infection, inflammation and destruction of some/all of the bowel). Successful surgery was completed. While on PO feeds at hospital Meyer had uncoordinated swallow/suck with sputtering and bradycardia (i.e. bradys). An oral pharyngeal motility study (OPMS) demonstrated aspiration on both thin and thickened liquids. Discharge report indicated NPO status. Meyer's discharge recommendation: 5CCs of thin liquid each day orally and remainder of nutrition via naso-gastric tube. He currently receives 85% daily feeds via an NG tube, but when we attempt to increase his oral feeds he shows bradycardia. After trials with a medium flow Playtex nurser, he was very successful with the Haberman feeder using thickened breast milk for a couple of weeks with no Bradys, mom paced him from fast to medium flow as he got organized with the feed. We are thickening the breast milk with rice cereal (pediatrician and I felt giving a preemie rice cereal early was the lesser evil to aspirating on thin liquids). He saw a renowned, pediatric ENT at Emory University due to stridor and was diagnosed with fairly benign laryngomalacia – she feels it will disappear and is not impacting his swallow -- she scoped him, looked at his swallow without liquid and said it looked "fine.”

In the past week it has changed – he has increased Bradys. Pediatrician and mom think it is due to increased GERD. Last week, he went from 40 CCs via the Haberman (we limited amounts to work him up to accept it without Bradys) 3 times per day, to less than 20CCs at each feeding and he "falls asleep" during feeds. I think he is becoming cognitively aware of the GERD and refusing to suck. His mom did a trial feeding on the breast yesterday and he sucked well. I'm thinking maybe he has not learned that the breast causes pain from GERD. He does have some decreased oral motor skills with his jaw and cheek, but he is able to suck a pacifier well. We are doing O-M exercises daily. My thought is to maintain the O-M exercises and treat the GERD in the hopes we can get it under control and get him to eat more. Would love any thoughts you might have – poor baby has lots going on.

Thanks, Jennifer

Hello Jennifer. He does sound like a complicated little guy, and you have done a good job with him. I understand that sometimes you have to make a decision about using rice cereal as the lesser of two evils...but I am always concerned about motility (and allergies) when thickening premies' feeds. Have they explored possible allergies? Is the baby being bottle fed with the NG tube in? This MAY account for increased reflux. Is mom working with a lactation consultant? There MAY be less reflux with breast feeding than bottle feeding. Have they tried a lactaid? If the baby is sucking well on the breast...this may be an idea. In what position are you recommending feeding him? Feel free to run the pre-feeding exercises by me if you want another set of "eyes.”

Lori Overland

We are just beginning our feeding clinic at a Medical Center for outpatient pediatrics. I have done one feeding evaluation since taking your class Feeding Therapy: A Sensory-Motor Approach, but now have a child on my caseload with an EXTENSIVE medical history, whom I am to evaluate. He has Tubuler/Tuberous sclerosis (tumors growing in his brain and other organs). He has seizures (is on seizure meds), severe Autism, nonverbal, hyperventilates, central sleep apnea, severe GERD, Bradycardia (when sleeping), desaturations (when tired or sick). He is seen by nearly every doctor imaginable. He had an MBS which showed aspiration with thin liquids, but was cleared for nectar liquids and pureed foods. He does not feed himself; he is held down by a weighted blanket because when awake, he severely injures himself by hitting his face. His adoptive mother indicates he was eating very well (not puree - he refused it, but would eat mechanical soft - whole without chewing) until January when his PO intake severely decreased to where he will only eat 1/2 of a meal. He had a PEG tube, which is now a Mickey tube, and gets G-tube feeds following meals to cover the calories he didn't get by PO means. He needs 1980 calories a day due to his constant effortful breathing. The family's goals for him are to increase PO and be able to chew foods. I did a very brief oral motor stim with him, and he tolerated facial massage and accepted a toothette to his cheeks and tongue. I'm not even sure of what questions to ask, but am thankful for any insight you may be able to provide. Thank you in advance! 

This sounds like a complicated child for your second feeding evaluation! So...the most important thing to remember is ..no extraneous "oral stimulation.” It is important to make sure you are mapping sensory input on to motor goals to support nutritive feeding. As you presented the toothette under his top lip, did you get upper lip mobility? Did he contract his cheek when you did the cheek stretch? Did you observe lateral tongue movement? In your assessment, look at the motor skills he needs to support safe nutritive feeding of texture modified solids and use your pre-feeding exercises to facilitate them. If he doesn't respond to the input you use...you may have to increase the sensory input (i.e.: dip the toothette in ice chips, cautiously experiment with vibration...etc). He sounds like a child who needs intense sensory input (i.e.: the weighted blanket, self abusive behaviors). Has he had a good sensory processing evaluation? If not, this is really important...a good sensory diet may help decrease the self injurious behaviors. I also want you to make sure you look at posture and alignment for both your pre-feeding and feeding programs. As you make observations, feel free to email me.

Good luck!

Lori Overland