Problem-Solving: 3 y/o with Polymicrogyria

Question:

I have a family with 3yr old son dx- polymicrogyria. During current hospitalization, treatment team is recommending NG tube and NPO. He will be sent home with this in place at least 4-8 weeks. We have been working on feeding/swallowing for several months now. My question is, how detrimental to current feeding and swallowing goals is this long term NG tune placement? Should the family receive more counseling regarding PEG prior to returning home (they are in a city, 12 hours from our rural location). I don’t want NG to result in increased risk of aspiration of reflux or hinder oral feeding goals. Is PEG better option at this point? Help please.

Answer:

You are asking excellent questions. Trust your instincts. As you know, this is a complex neurologic diagnosis that has enduring adverse effects on all developmental domains, especially feeding/swallowing. One of the mantras I offer all my medical and nursing colleagues and my students, is “co-morbidities matter”. My experience suggests that this is not the perspective that most medical colleges utilize as the framework for their differentials related to ability to feed orally, both for adequate intake and or airway protection. One set of clinical data/findings about dysphagia for an infant nor child will/should lead us to have very different plan of care when the co-morbidities and history are different. There is no pigeon hole or cookbook we can use but rather it requires a complex critical analysis of the data about that patient in the context of his unique history and co-morbidities that must guide our clinical decision-making, It can then become frustrating for those of us who recognize this close relationship between co-morbidities and prognostication, both through research as well as our clinical experience, when options are offered and decisions are made that don’t assure such a differential. While their intentions are clearly good ones, sometimes there is a tendency in these situations for the medical team to want the parents to be happy (i.e., a wait and see attitude), or to not understand the complexity of the underpinnings lacking, or to not appreciate the complex skills required to feed safely and meet nutritional requirements.

I don’t know if there are other co-morbidities, but if so, those will also act as rate limiters for feeding. This diagnosis, and the nature of its pathophysiology, is the lense through which we as SLPs then look at skill progression and, therefore feeding ability and safety. It is highly unlikely his related feeding/swallowing challenges will resolve in the short term (i.e., 4-8 weeks) as their apparent proposed “short term” NGT plan suggests. The NGT may indeed exacerbate EER/GER and create the setting for onset of feeding aversions due to the negative effects of an indwelling tube that makes the oral facial area unpleasant, especially if they decide to do a bridled NGT which may their plan given that at age three, there is also great risk to dislodge the NGT, which in itself creates risk for airway invasion. At 3 years of age, the likely maladaptive motor maps already developed due to likely struggles to feed will create further stress and roadblocks for this child.

I recommend the team strongly consider a PEG forth above reasons. Look at this recent publication that looks at NG instead of a PEG.

Keep up the good work. The child and his parents are lucky to have you in their corner.

I hope this is helpful.

 

A retrospective review of enteral nutrition support practices at a tertiary pediatric hospital: A comparison of prolonged nasogastric and gastrostomy tube feeding

Ricciuto, Amanda et al.     Clinical Nutrition , Volume 34 , Issue 4 , 652 – 658

They compared prolonged nasogastric and gastrostomy tube use, hypothesizing that earlier gastrostomy improves outcomes. Their results showed: Among 166 patients, the median total tube feeding duration was 24.9 (3.0–75.6) months and varied with underlying disease and swallowing assessment. The median duration of nasogastric tube use was 7.8 (0.7–45.3) months. Food refusal was significantly associated with nasogastric tube exposure >3 months (RR 3.3, p < 0.001, NNT = 3) and anthropometric outcomes were superior in gastrostomy-fed patients. Rates of aspiration pneumonia were similar in both groups. Despite more initial opposition to gastrostomy and a higher complication rate, gastrostomy users appeared more satisfied with their experience, as demonstrated by a much lower discontinuation rate than observed in the nasogastric group. They concluded prolonged nasogastric feeding is associated with increased food refusal and less favorable anthropometric outcomes and earlier gastrostomy placement may be preferable.

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