Hi everyone, not sure if i'm posting in the right place (I'm going to post on childrens health too.)
Don't really know where to start with this, I think it will be v.long so please bear with me!
My DD was born 12 weeks prem, she was NG fed from birth (a tube through her nose to her stomach) and then introduced to bottle feeding at around 9 wo. She was always good at drinking her milk and slowly put weight on.
As soon as I started weaning at 6 months I knew something wasn't quite right, DD had absolutely no interest in food whatsoever. I tried and tried to get her onto puree and baby meals but even the smallest of illness or upset and she would refuse food for days, relying on bottles of milk to fill her up.
Any issues I had about her poor weight gain was blamed on her being prem. Any concerns over her lack of appetite was also blamed on that. I went to HV, GP and spoke to people at the weighing clinics, and was told DD was fine and to persevere. So I did.
For the next 18 months every single meal was a battle, she refused to chew food properly, trying to swallow it straight down and then choking and refusing any more, anything that didn't eventually dissolve in her mouth she spat out or choked on. (Sorry to confuse but she CAN chew and swallow food, I have seen her do it, but she chooses not too iyswim?)
Soo eventually the routine went like this: breakfast of very milky weetabix, lunch of soup, tea of soup and yoghurt/custard. Bottle of milk before bed. I offered her snacks through the day, anything and everything that I thought might tempt her but no, she dosen't even eat chocolate or crisps.
I feel like I've tried absolutely everything, where, when, what and who we eat with.. and she just simply isn't interested.
So anyway, she was underweight and I was very worried about her, just before Xmas last year she started getting coughs and colds, her eating got even worse and still I couldn't get a health proffesional to refer her to someone that could help. In Feb she ended up in hospital with Pnumonia and was very very poorly. She was far too ill to eat by then and was losing weight fast so we started NG feeding her protien drinks. She recovered very slowly and over the next few months I just concentrated on getting her strength back up and her weight up.
She has recovered now, and I know have a dietitian, SALT, consultant and community nurses monitoring her.. but they all just seem to want to PEG feed her and be done with it. I feel like screaming because I struggled so long on my own and I felt I was making a tiny bit of progress before she became ill. I feel like they have come in 2 years too late and are not willing to look into WHY she is like this.
I know she needs the protein shakes to help her and she will drink them, in her own time, but the powers that be have given me just 4 weeks without the NG to get her drinking the shakes (which are foul btw) and eating again before they do the gastrostomy.
Has anyone been in a similar situation!?? I would really like to hear from anyone who has DC with gastrostomys because they won't eat etc.. and thanks for reading :)