[mamameg]

My step-son has a very rare genetic condition which forces a strict vegetartian, low-protein (no more than 10 grams a day) diet, similar to the diet a child with PKU might have. Monitoring and limiting his protein is a constant struggle, and poor diet management can have life/death consequences. He is 12 yrs old now, and maturing about it somewhat (at least he isn't hiding in the bushes trying to sneak chicken nuggets like he did at age 6), and it's been better lately, but I know it will never be easy.

Any one else out there dealing with this sort of thing? I'd love to chat about it.

 

[mamameg]

Just bumping my post to see if I can get a response.

No one else has to deal with anything like this? Even if it's not protein specific, I figured at least one other person would be managing a child's strict diet. Maybe I'll try posting in Nutrition and Good Eating.

 

[mom2tess]

I have an 8 yo DD that also has a highly restrictive diet. DD has Glycogen Storeage Disease and is restricted on food that contain fructose, lactose & sucrose. It was hard adjusting when she was first diagnosed and then about the time we got used to it, she started school and now I don't have as much control over what she can get her hands on. It is very much a challenge but I just gotta keep reminding myself that it could be so much worse.

Melinda