We see the dietician regularly and have done for about a year or so now. Unfortunately it hasn’t proved to be very helpful and now we are at crisis point and that’s when she starts to panic and trying to desperately help. Reaching out to the other professionals she knows for advice.
When we first went to see her Dylan was on the 75th centile. Even though he didn’t have a very varied diet he had one thing from most food groups and what he was eating he was eating in large quantities. At this stage I asked for advice on how to encourage him to try new things and was told to just keep offering it to him, do lots of sensory play but to not be too concerned as he was getting most of his food groups and she provided us with a powder to put in his drinks to provide him with his vitamins and minerals.
Next time we went to see her his diet was starting to be a bit more restrictive, he hadn’t gained weight but also hadn’t lost any so she said not too worry to much. She gave the same advice as previous and couldn’t give any other advice on how to encourage him to eat or offer any other support.
This time he had dropped to the 50th centile and she wasn’t happy and said that if he was to drop more it would be serious. I voiced my concerns about him possibly having an allergy and this may be stopping him from wanting to eat. If he relates food to pain and only has these select few as safe and knows they don’t hurt then maybe that was why he was so selective. She said that may be true but at this stage didn’t do any tests etc. Despite saying that she still couldn’t offer us any help, workshops or get us referred to anything else to try and help him.
Now he has dropped to the 25th centile and is malnourished. His height is dropping too and this is a huge concern as is now showing that his restrictive diet is effecting his bones and everything too. His diet has got worse and worse, he now eats around 5 things. She has prescribed these smoothie shake things to try and aid him to put on weight, but to put on weight from these he needs to be drinking 6 of them a day. We are finding it rather a struggle to just get one in, but I am so glad he will actually drink it if we trick him. If he doesn’t start to put on weight quickly he will need to go down the medical route, which is obviously a very scary prospect for anyone.
She is now thinking we need to start looking at how his gut is, his throat and all that linked to his digestive system. Also that we need to try these shakes for a few more days and if they still keep having an effect like they are at the moment that they think he may be lactose intolerant.
It is an extremely stressful time for us. I am like a wound up cog, constantly on edge. Having to calorie count everything he eats each day, worrying that he wont put on weight and what if. .
Hopefully next time I can report back that he is putting on weight. Fingers Crossed!