Disclaimer

All posts on this blog that inlcude information about my medical care/treatment of Ornithine Transcarbamylase Deficiency (OTC) are for personal documentation and in now way are to be taken as "medical advice".

All management plans are customized to each patient's needs/disorder and my information is exclusive to my specific needs and are overseen carefully by my team at Strong Memorial Hospital in Rochester, NY.

If you have any questions about anything you read here, in regards to UCD's, please feel free to take what you have read directly to your own team.

Remember, I am just a patient, not a doctor. I would LOVE to talk to anyone about "everyday living" with Urea Cycle Disorders and would be happy to answer any questions...anytime at all.

AMY

Amy & J.J.

Amy & J.J.
Happiness is possible even while living with a UCD

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Friday, April 30, 2010

Food Cravings & Salt Intake

Anyone who has ever been to a National Urea Cycle Disorders may have noticed that every year there are several foods that keep reappearing on the luncheon buffet....this is because there would be outright revolt if you tried to serve UCD patients lunch without these foods available.

The foods in question are:

  • Pop (never diet) and chips (flavor of chips varies from patient to patient...I prefer regular)
  • Potatoes (tater tots, french fries, potato salad (my personal favorite - I go through at least 5 lbs. in a week))
  • Olives (both green & black) & pickles
  • Fruit (strawberries & grapes are my favorite) - my advice for those of you having trouble getting your kids to eat this stuff buy some chocolate dip and up the calorie content
  • Italian dressing & mayonnaise or Miracle Whip - we use it up the calorie content of higher protein foods to make them more edible (as my dad says to this day..I like to have a little egg salad with my mayo)

These are the foods that got me to age 12 without being diagnosed. 

As my mother says she could get me to eat my sandwiches if I could have the crust removed and have chips & a pickle or two.

For some reason a lot of UCD patients I have met also crave high sodium foods.  For example, after I was initially diagnosed by Dr. Brusilowe he took my salt off my meal trays to see if it would change my eating habits.  That did not last long after he saw how much it affected my appetite.

I guess what I am trying to say to the patients and families out there is that I have figured out as a UCD patient that if I am having a food craving it is usually for a reason and I have just learned to go with it.  Also, after attending several NUCDF conferences and seeing other UCD patients craving the same things that helps me and my husband realize my cravings are not that insane.
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3 comments:

  1. UnknownMay 12, 2010 at 9:14 AM

    Love the list! As a fellow OTC carrier, those are all foods I live off as well. (Except the Miracle Whip/Mayo.) I've never been to conference though.

    And other than my family, I think geographically you are the closest OTC carrier I have "met". I'm near Toronto.

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  2. AnonymousJune 7, 2011 at 1:00 PM

    Son and I crave salt and soda pop (not diet). Curious if others deal with borderline hypertension with so much salt?

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  3. SusanSeptember 12, 2011 at 6:08 PM

    Amy, my daughter was diagnosed at 12. While I read this, I thought, you were my daughter. Everything you wrote was her.. She is now 24. I have been to one of those conferences. A wealth of knowledge. I did a lot of crying that weekend. It was nice to talk to other parents going through everything I was going through.

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