22 Month old Nil by mouth NG fed on Nutrini Multifibre

[Mar19901]

DS has had recurrent chest problems since 7 weeks old. he was ventilated with a collapsed lung last year and since November 2017 after a video study was determined to be aspirating food into his lung at which point he was put nil by mouth and fed solely through NG.
His dietician who we met briefly as an Inpatient put him on 180ml Nutrini Multi fibre milk 5 times a day which includes one night feed at about 3am and 80ml flush of water pre and post feeds.

We seemed to be getting on fine with it but over the last 4 weeks or so I'm noticing DS is getting hungry before next feed due he is also putting stuff of floor into his mouth. He is said to have some delays as he has only just learnt how to walk and he doesn't talk but he is having massive tantrums when I take anything out of his hands. I don't know if he is hungry or if he has just at the phase of putting things in his mouth. we also cannot eat in front of him he crys and has a tantrum. it's really breaking my heart I don't know how to help him.

Sorry for long post and thank you in advance

You should still be under a dietitian if your child is tube fed. His number of feeds won't stay static as he is growing so if you don't have dietetic review I would chase it.

thank you for ur reply should have said his first appointment with dietician is 29th June but I might try giving them a call tomorrow

Definitely call them and tell them. They might be able to squeeze you in earlier. When was he last weighed?

November to June is too long for a first review by your dietitian at that age. He's probably just needing an increase to his feeds so definitely give them a call, they may be able to advise over the phone

we in and out of hospital almost every 2 weeks his last weight was taken last week when we were taken in with a bad chest and restarted on antibiotics.

user- yes I thought so too I will definitely give them a call tomorrow and see what they can advise