In need of suggestions

He's 15 months now so cow milk and blended diet. Before then infitrini high calorie but we started BD at 6 months x

@Mel s Hi so my little boy is 5 & 1/2. We’ve been on all different milk supplements over the years just got the PEG fitted last Thursday. In alder hey they have him fortini with a teaspoon of strawberry nesquick and he tolerated all the feeds till we came home. Now we’re home we’ve been giving altroshot and he vomits each time. He’s been under dieticians all his life as he’s on -5centile. I just don’t know what to do. Looking for other suitable milks for his age with the highest calories in. The infatrini we had from 14 weeks upto age 2. Then pro cal, pediasure, ensure, and alteoshot.

Can I ask what reason your little ones are peg fed as my daughter previously was nasal tube fed. However she thrived and it was removed. She's now deteriorated and is currently on fortisip however she is under 1 on the NHS weight bmi chart and previously peg fed has been mentioned

I'd definitely look into blended diet. Real food through the tube. My son went from puking every feed and not gaining, to gaining, never puking, hair growing etc. Best decision I ever made for him :)

@Kim Jakob has dysphagia and aspirates on fluids x

@Mel s thank you. X

@Kim so we’ve held off for as long as possible from PEG fed as we have tried and retried why supplement there is. And he gains weight to a point but if he gets an illness as he did in feb this year he drops loads of weight rapidly I’m talking 1kg in 7 days. They tried to insert and NGT twice whilst admitted in feb but he vomited both times so they removed it and we’ve now got the PEG fitted last Thursday. We’re looking to get it changed to a MIC-KEY button at the 6 month mark but anytime upto 2 years it can be done so we’ve time to play with the ides before that goes ahead. My son is Autistic has ADHD and Sensory Processing Disorder, and Severe delay in all areas. He also has numerous other medical conditions but the neurological ones are the ones that hinder him most.

@Mel s I did suggest we look at blended diet but we need the highest calorie in the smallest amount so at the minute altroshot is the only one that provides this. We tried ensure but he was too high with his protein intake so we had no wiggle room with it.

@Kendra my daughter has brain damage and she's legally blind she also has sensory processing disorder so yeah I totally understand the neurological part being the most hindrance. She's 143cm tall but only 30kg she is literally skin and bone she gained 4kg over 6months on fortisip and they tried to take her off it, but her disability nurse backed me and said she believed she has an issue retaining the calories and vitamins in her food. She struggles with textures but also remembering that she hasn't eaten or has eaten or that she likes a food. Thank you for you comments it has made me feel a bit more positive about her potentially going down the peg route..sorry for hijacking this post. '

@Kim no worries. Unless you’ve a child like it people don’t understand how much it interferes and dictates day to day life. My so is 106cm tall and weight Sunday was 11.64kg. He his 5 & 1/2. The most he’s ever weighed in his life has been 12kg so not even 2stone. He’s been like this all his life. He lost weight at the end of my pregnancy while I was carrying him so I had to be induced and was 6lbs 1oz born at 40+1

Obviously we are really new to the PEG but feeding/ failure to thrive issues were very clued up with but any questions I’ve no problem to answer. I feel you get a better perspective from other parents in the same boat as yourselves rather than statistics from professionals. As I’m sure we all can agree, I none I can know of my children fall into the statistics. For one thing or another.

My daughters 12 but yeah weights always been an issue however her epilepsy has kinda took priority however now her weights starting to take over. I was just think when my daughter was tube fed we were given little glass jars of formula, and when my aunt was peg fed she was on fortisip too.

@Kim it’s difficult when there are so many issues that interact with each other also. My sons teeth are all rotted because of his diet and supplements but as there his milk teeth dentist won’t do anything however if his adult teeth become the same then they will look into options in the future. As much as I don’t like the thought of his tasty being replaced in the future it’s the price we have to pay to get calories into him to keep him alive. My point has always been if he hasn’t got his weight nothing else matters because he won’t be alive to progress with anything else.

Paediasure xx