My 6 yo son has had a diagnosis of PDD-NOS for approx 18 months (although this took close to 2 years to achieve!). He is in school and we have seen huge improvements in his play, taking turns, etc. His reading is exceptional but comprehension at times is lacking. Meltdowns are rare thanks to a fantastic anxiety specialist we see who has given us some amazing strategies. Toileting, however, continues to be an issue with soiling a daily occurrence although we have seen improvements with the guidance of a gastro specialist.
Our major issue right now is his eating or lack of. Once upon a time, he ate everything and as he got older he gradually dropped certain foods off his menu. He does have sensory issues and we appreciate that. However, we are the stage where his daily intake would be lucky to hit 500 calories. He is on a mile of supplements for vits and mins and a prescription drink with additional fat. Some days he refuses to eat anything. Given he is in the lowest percentiles for weight and height (he was 3 months premmie), he doesn’t have fat reserves to draw on. We have seen Feeding Clinics. We have tried every rewards chart there is, we have spent whole weeks just looking at a new food, another week on kissing, etc, etc. We have let him choose the new food to try but when it came to having 1 tiny nibble with a massive reward offered if he did we had the meltdown to end all meltdowns which were very scary. Basically, we have run out of ideas. We are at the stage of investigating alternative therapies (if they exist) or moving to tough love. While we know these are not recommended, what else is there left?
He has days with very little energy and he has almost permanent black rungs under his eyes despite 9-10 hours a sleep a night. The lack of food impacts his behaviour at school and his concentration levels (which are a struggle at the best of times).
Can anyone help, offer some strategies, someone to see?? I am desperate and a very worried and scared mum.
Emma (Brisbane, Australia)