Anonymous wrote:My 12 yr old has many of the same issues. We have seen genetics, GI (repeatedly), endocrine, and multiple nutrition visits. No real diagnosis. We finally consented to a feeding tube bc the only thing anyone has come up with is that he should eat more. Weight gain has been minimal even since then. No idea where we are going next. I wish I had something helpful to offer. Right there with you though.

hi, that's me ^^^. Still nothing useful. 8 months of feeding tube, slowly slowly gaining... finally approaching the 1st percentile for weight. Endocrine says he's not their problem. Clinging to the 3rd percentile for height so that's fine apparently. The diagnosis apparently remains "needs to eat more." FFS so frustrating.

I echo those PPs who recommended switching meds. DS is on Metadate and while it hasn't curbed his appetite, it definitely slowed down his binging. I would also encourage you to experiment with food. Hit your local Trader Joe's. They have a lot of options. I hooked my DS on cauliflower gnocchis, quinoa fiber bars. He also eats a lot of grilled chicken. I don't know if you have make your kid his own lunch vs. cafeteria but stop cafeteria food.

Get a celiac panel. See an endocrinologist.

We have had good luck with adding Remeron, it increases appetite and helps with sleep and depression.

The hypermobility suggests that an evaluation for one of the Ehlers-Danlos variants would be worthwhile. It’s a class of connective tissue disorders, and some can have gastro-intestinal impacts.

I know this is an older Post but have any previous posters gotten any diagnosis yet? It’s a bit uncanny how my kid has similar habits including the curling up in a ball. Age 13 and 77 pounds.