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Hello:

My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr old nephew is now being follow by our metabolic MD as some of the things going on with him sound a lot like mito, but he was born @ 29 wks so it is hard to tell. He was 2 lb 10 oz when he was born and gained weight fine until recently he has not been gaining. He is still eating the same ( a lot ) my sister is adding olive or vegetable oil to his bottles for extra calories. We were able to get him a visiting nurse and she has been weighing him:

Mon. 10/11 17 lb 1 oz

Sat. 10/16 16 lb 12.5 oz

Wed. 10/20 15 lb 12 oz

Yes, it is the same scale, it is put in the same spot each time, he is naked when she is weighing him. Has anyone else experience this and so quickly? We had some weight lose and no weight gain with Hailey as a baby, but never anything like this.

She was able to get a Nutrition appointment November 9th and we have some calls out to see about getting something earlier. If anyone has any input please let me know.

Thanks~

Kerry

Hailey 5 yrs. Mito & FOD

Brenna 3 yrs. Mito & FOD

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