Thank you for the interesting poster – certainly a condition that paediatric gastroenterology units are coming across more and more. My experience is that the gastroenterology team often gets called upon only when patients get to a truly parlous state- is that your experience as well or do you get involved earlier? Do you feel there is a need for us to offer input earlier – e.g. in an MDT clinic with neurology/ neurodisability?
What is your experience with the newer blended food formulas (e.g. Isosource mix) ? Do you find them a helpful adjunct?
Thanks for your comments and questions
Presentation timing with such symptoms can be at an advanced stage but may reflect the change in GI function for children and young people who had been relatively steady on their feed regimen
There can appear to be a window of success with BD and nutritional status, though this may also reflect the natural course of declining function
Close MDT working with neurodis ability/neurology and palliative care colleagues is fundamental
RHC, Glasgow does not use isosource but network hospitals do. Anecdotally we have not seen the benefits with isosource as we have with BD including families who have then gone onto BD. Whether this is consistency or the sterile pre packed nature
Rulla Al-Araji
5 years ago
Agree with Kwang Yang. Very interesting study and hope that future studies will continue to show the benefits for BD and be used for those cohort of patients more widely to improve their quality of life and reduce their symptoms and potentially list of medications.
Thanks Dr Protheroe – it can be a challenge to maintain the excellent work of families with BD in the hospital, respite and school setting. My colleagues presentation this morning on the Scottish BD working group demonstrated the significant work into over coming these barriers to enable families to give their children and young people food. The policy document, checklist and training pack we hope will make a real difference in changing this culture
Anthony Wiskin
5 years ago
Any idea how much blended diet is required to get symptom benefit. My experience is that children don’t need to be exclusively blended diet fed to get benefit
Thanks for your comment, agree with your experience. Many families report substantial benefit to symptoms with partial BD, even a single daily blend. RHC, Glasgow team are looking at QoL data and it will be useful to quantify this.
At the severe end of the scale some children appear symptomatic with any formula aspect and are maintained on full BD
Thank you for the interesting poster – certainly a condition that paediatric gastroenterology units are coming across more and more. My experience is that the gastroenterology team often gets called upon only when patients get to a truly parlous state- is that your experience as well or do you get involved earlier? Do you feel there is a need for us to offer input earlier – e.g. in an MDT clinic with neurology/ neurodisability?
What is your experience with the newer blended food formulas (e.g. Isosource mix) ? Do you find them a helpful adjunct?
Thanks for your comments and questions
Presentation timing with such symptoms can be at an advanced stage but may reflect the change in GI function for children and young people who had been relatively steady on their feed regimen
There can appear to be a window of success with BD and nutritional status, though this may also reflect the natural course of declining function
Close MDT working with neurodis ability/neurology and palliative care colleagues is fundamental
RHC, Glasgow does not use isosource but network hospitals do. Anecdotally we have not seen the benefits with isosource as we have with BD including families who have then gone onto BD. Whether this is consistency or the sterile pre packed nature
Agree with Kwang Yang. Very interesting study and hope that future studies will continue to show the benefits for BD and be used for those cohort of patients more widely to improve their quality of life and reduce their symptoms and potentially list of medications.
Thanks Rulla
Agreed – more multicentre studies including databases of real life practice are needed
Another very helpful contribution, thank you.
great poster.
Can children invariably access BD when at school and if in hospital ?
Thanks Dr Protheroe – it can be a challenge to maintain the excellent work of families with BD in the hospital, respite and school setting. My colleagues presentation this morning on the Scottish BD working group demonstrated the significant work into over coming these barriers to enable families to give their children and young people food. The policy document, checklist and training pack we hope will make a real difference in changing this culture
Any idea how much blended diet is required to get symptom benefit. My experience is that children don’t need to be exclusively blended diet fed to get benefit
Thanks for your comment, agree with your experience. Many families report substantial benefit to symptoms with partial BD, even a single daily blend. RHC, Glasgow team are looking at QoL data and it will be useful to quantify this.
At the severe end of the scale some children appear symptomatic with any formula aspect and are maintained on full BD