Robyn had an NG till she was 13 months old. She was the same to begin with had severe reflux and couldnt tolerate bolus feeds at all. She would vomit with even 20 mls given in a bolus. We ended up using a pump just giving tiny amounts like 20 mls over an hour to get her to tolerate feeds and even then it was hit and miss.
She was ill a lot during this time which didnt help. As she got older and less ill we found she could tolerate a little more but we slowly would creep it up. We started doing this from 30 mls. We left it at that for a week. then increased to 33mls after another three days we went to 36mls etc etc. just increasing tiny amounts and giving their body time to adjust. We got stuck at 50 mls for ages though. She just couldnt tolerate any higher.
The trick i used to help her progress I got from another mum with a child with cHARGE and that was to have them lying completly flat to feed. Now the NHS WONT advise you to do this, its against ALL the guidelines and if your professionals know you are doing it they will reccomend you stop. I went into it knowing all that as it can be dangerous for airways if the child vomits during a feed. But, for us it worked. We managed to keep increasing feed volume per hour much quicker. We moved from 50 -100 mls in just a few weeks. At one point we even tried a bolus feed of 100mls and it was tolerated.
I am not reccomending you do this just passing on something that worked for us, if you decide to try this obviously be very careful and never leave your child unsupervised whil they lie flat.
Our issues with food werent about allergies and more about DD's oral aversion and inability to chew and swallow. We started introducing solids at 6 months and now 14 months later we have only just stopped using purees. We managed to get rid of the NG 6 months ago. Luckily for us just at the point they told us she would never feed by mouth and she would need a PEG tube fitted. Speech and Language Therapists dont always know everything. Trust what your instincts are telling you is right for your child.
If you wanna chat about getting off an Ng feel free to pm me. I also documented our journey about getting rid of the Ng in my blog if your interested, the link is in my signature
He also has severe failure to thrive and global delay.
