BSPGHAN 2021 Virtual Annual Meeting

27- 29 April 2021

NO GUT SYNDROME IN PAEDIATRIC PATIENTS

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David Campbell
David Campbell
5 months ago

Thank you.
It may be the least of the problems these children experience, but can you envisage a prophylaxis against renal stones? They must be at very high risk, but can you do anything about this?
Such an aggressive graft rejection, does this imply anything about the patient? Chronic sepsis, or were there other factors that you can suggest that might have been at play?

Elena Cernat
Elena Cernat
5 months ago

Dear David,
Thank you very much for your questions.
Regarding the renal stones, the first patient has only water orally that it’s lost through the duodenal tube; the situation is similar for the second patient – everything that he will have orally (minimal quantities) it’s lost though the duodenal stump. As no food reaches the colon, they are not at risk of enteric hyperoxaluria. We think the renal stones that the second patient presents are caused by different factors like episodes of dehydration due to high losses and poor family compliance with the replacement, episodes of sepsis…We had extensive discussion with the family and the compliance with the replacement has improved, we have also added more fluid to the PN…
Nevertheless, the management of this patients it’s extremely difficult. The first patient has gallstones but unfortunately due to his remaining anatomy it’s impossible to offer him treatment with UDCA.

Regarding the severe graft rejection in the second patient, the transplant team was not sure what was the cause for it; it’s possible to be related with the immune system of the patient but this has not been elucidated; the team had extensive discussions with the parents regarding the risks of a new transplant.

David Campbell
David Campbell
5 months ago
Reply to  Elena Cernat

Thank you and this is helpful learning for me.
Good luck with these patients!

Elena Cernat
Elena Cernat
5 months ago
Reply to  David Campbell

Thank you!

Tracey Johnson
Tracey Johnson
5 months ago

Challenging patients!
Can I ask whether you have managed to cycle the PN sufficiently for these children to have any hours off PN or are they on 24 hour infusions?

Elena Cernat
Elena Cernat
5 months ago
Reply to  Tracey Johnson

Thank you for your question Tracey!
We managed to cycle the PN for both of the patients, they are on 14 hours PN at the present time.
At some point the first patient had some unexplained episodes of hypoglycemia that were extensively investigated so the hours of PN were increased, but with time we managed to decreased it again and he is again on 14 hours without episodes of hypoglycemia.