How do you live with MCADD?

Eva - posted on 03/11/2011 ( no moms have responded yet )

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I have a 2-year old daugther with MCADD.
In the meantime I have read everything there is to know about what exactly that is (and put it on a website too: www.mcadd.be). So I pretty much figured out the theoretical part.
But I still have sooooooo many practical questions!
Like for example:
- do you travel with a child with MCADD and how do you enjoy this without stressing all the time?
- what do you tell your child about this disorder once he or she is old enough?
- what do you tell the people in school?
- do you let your child stay overnight with friends or on schooltrips etc?
- do you ever let your child eat something that he or she actually shouldn't?
- do you make your child wear a bracelet or necklace or something that explains his or her disorder?

Thanks for sharing your experiences!

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