User - posted on 04/04/2012 ( 5 moms have responded )
Hi my little boy is now 21 months old.He was born 10 weeks prem and had a gradeIV bleed at birth.This has left him with Cerebal palsy,PVL.He was vented on and off and has had sleep aponea since birth.He has never fed well, was put on domperidone and ranutudine for reflux on NICU.He has been on various milk including prescription formula(nutramigen).Last year he spent 13 weeks in hospital needing NG tubes as his feeding was awful.He had 3 videofluoscopys and was diagnosed with bulbar palsy with identifiable laryngeal aspiration. We were put on thick and easy and were on 3 scoops per 100mls. He was listed 3 times to have PEG fitted but his consultant at our local hospital(doesn't do PEG) cancelled every time saying we were managing.Since then they have tried decreasing thick and easy which is remotely unsuccessful.I had an arguement with my dietician and refused to work with her as she was patronising as were 2 consultants we saw(I am a single mum with 3 children and said it was my stress that was problem) and we have had social services now heavily involved. Daniel is not really putting on weight, approx 2-3oz every 4-6weeks.His speech is becoming more and more delayed and feeding is becoming more and more of a battle again.He has NO dairy in his diet at all,he either totally refuses any kind of milk or diary or will have a taste and then wretch and vomit. He has also started regurgatating and choking in his sleep. Has anybody else had any similar issues either with health of child or with consultants?