Reflux with jejunal tube

[2old2beamum]

Can anyone help please before I tear my hair out.Briefly DS 13yrs has j-tube, gastrostomy useless due to copious reflux causing extreme distress. For 6 months life idyllic since having jej, now despite having nothing via gastrostomy since January is gagging and managing to bring up large amounts of gastric juices (ph 6) every time he has his drugs (he has quite a lot) He is fed 23 hours a day. Hospital caring but seem to be at a loss. Also has frequent periods of severe ?pain. Am a tough old bird but he reduces me to tears!

Have you tried getting in touch with Pinnt - www.pinnt.com/

There may be someone there who can help.

Hi,

My DS was Duodenally fed ( couldn't get the tube in to the jej!) for a long time. He still had nasal tubes then. IN addition to his Duodenal feeding tube he also had an NG tube which we used to drain the bile from his stomach. He was almost pewrmanently attached to a bile bag.

Is it possible for them to place a double lumen PEG/Button to allow your son to drain the gatric juices from his stomach when he feels uncomfortable. Would he manage to to this by himself?

Hope you can get it sorted. Understand how horrible this is. xxxx

Thanks for replies, he has a double lumen peg/jej I aspirate 6hrly prior to drugs but he still manages to reflux quite large amounts. Sadly he can't do this himself as he is deafblind but thanks for not making assumptions and understand how awful this is. Hope your son is well xx

this must be so frustrating! just when you think you cracked it, it all falls apart again!
is he on any PPI's like omeprazole or lanzoprazole? as this would reduce the anount of gastric acid.
Also (stupid question) could he be fed with a higher calorie feed and less often?
or maybe a different feed might reduce the gastric juices

I'm so sorry to hear about this - it must be extremely stressful for both of you. This might be a stupid suggestion, but a lot of the children I work with have Gaviscon / Pepto Bismol injected straight into their PEGs as often as is required. A simple medicine but often really effective. Would that be a possibility?

Another technique that is used is thickening their feed. Obviously this can cause problems with blocked tubes but it might be doable.

I really hope you find a solution.