Some children on a feeding tube who display oral feeding difficulties may develop a dependence on artificial nutrition and have a hard time being weaned off of it, even though their health may permit it.

To face this problem, medical teams generally implement outpatient weaning as a first attempt, which involves regular monitoring for a variable amount of time (weaning periods lasting 6 days to 18 months have been reported in the literature (Gardiner, Int J Speech Lang Pathol., 2017 ; 19(2) :121-7.)), with two main focuses:

  • Reducing calories ingested through tube feeding;
  • Monitoring growth, assisting and guiding the child and their family.

Ideally, weaning is conducted by a multidisciplinary team including a paediatric gastroenterologist, a psychologist, a dietician and a speech therapist (Krom H, de Winter JP, Kindermann A. Eur J Pediatr. 2017 Jun.; 176(6):683-688) Schauster H, Dwyer, J Am Diet Assoc., 1996; 96 :277-281).

In case of failure as an outpatient or if the weaning is prolonged without significant progress, a weaning in hospital as an inpatient or in a long-stay centre may be considered. Weaning is usually considered to be long when it lasts over one year (Wright, Arch. Dis. Child. 2011, 96(5) :433-9).

Please note however that for some patients, the multidisciplinary team may immediately resort to hospitalised weaning. This is particularly the case in the absence of suitable family or re-educative support for the child.

These types of treatments require great effort from the entire family supported by a medical team, as well as awareness and cohesion of all health professionals involved.

These stays are intended for children for whom a tube feeding weaning project has been accepted by the referring hospital medical team. The support of the medical team and the family, compliance with contraindications and the evaluation of the oral feeding skills of the child are in fact prerequisites to check before organising a stay for weaning off tube feeding.

For several years now, some Soins de Suite et Réadaptation (SSR, or Follow-up and Re-adaptation Treatment) structures have offered long-term stay possibilities and recently formalised weaning protocols:

Their methods may vary: full-time hospitalisation for 4 to 6 weeks with week-end leave, daily outpatient visits for 2 weeks or outpatient visits 1 day a week.

Other structures ensuring weaning stays are being created in France, and two of them are located in the Hauts-de-France region:

  • SSR Pédiatrique Marc Sautelet in Villeneuve-d'Ascq (59) - For more information, contact the Outpatient Care manager at 03 28 80 07 70 
  • SSR L'ADAPT in Cambrai (59)

You may contact fimatho@chru-lille.frfor more information.

Weaning working group

Since 2017, the FIMATHO network has been involved in facilitating efforts for weaning patients off tube feeding via two main actions:

  • The writing of national recommendations for good clinical practices on weaning off tube feeding. They are intended for medical and paramedical professionals who monitor children receiving tube feeding. The development of these recommendations is coordinated by Dr. Haude Clouzeau, a paediatric gastroenterologist in the Children's Hospital of the CHU of Bordeaux, with the support of a working group composed of paediatricians, paediatric gastroenterologists and paramedical professionals (speech therapists, psychologists, dieticians) working in several University Hospital centres and paediatric (SSR) re-education and treatment centres. Recommendations are based on a bibliography created over the past 20 years, and on the practices of authors for which a consensus has been reached;
  • Assistance in creating a weaning stay. The working group has assisted the SSRs located in the Hauts-de-France region and is available to other national SSRs wishing to develop this type of project within their facilities.

For more information on recommendations or on assistance in creating weaning stays, please contactfimatho@chru-lille.fr