Week Three - The Diet.....

After the 3rd set of blood work, I got a call from the Nurse Practitioner (I really like her, by the way - she is shockingly truthful, which I am discovering is a rare thing). She told me that my daughter's phosporus levels were up, and that we needed to start her on a low phosphorus diet and some pills to take with meals to decrease phosphorus absorption.

There are some interesting metabolic consequences of high phosporus levels.  It makes your body produce excess parathyroid hormone, which among other things causes excessive calcium loss in the bones.  For children this frequently leads to one of the early symptoms of kidney failure, which is growth delay. Fortunately for my daughter this has not been the case, but the last thing we need is osteoporosis later.

The pills, by the way, are approximately the same size as the average prenatal vitamin.  And she takes 2 with each meal.

So they sent me a diet list. .  She looked it over and asked, "What am I going to eat for breakfast??" Followed by, "Hey! I don't have to eat chili anymore!!" That's the spirit!

 It's almost easier to say what she CAN eat than what she cannot No whole grains, no more that the equivalent of 2 pieces of white bread a day - including pasta.  White rice but not brown. No more than 1/2 cup of dairy a day. No cheese, no pizza. No nuts, no more that 2 tbsps of peanut butter per day. No soy. No beans.  No peas.  One-half cup of corn (popcorn, corn on the cob, etc.) per WEEK. No asparagus. No colas, diet or otherwise. No sunflower or pumpkin seeds. No ice cream. So, basically, if I can kill it and throw it on the grill, or it's fruit or most veggies, we're good.

I have patients who have to follow this diet, but since it is the nephrologists who prescribe them, I confess I had NO idea at all how miserable it is.

Adapting is a challenge.  We found a bread made of white rice flour and flaxseed that she says tastes just like whole wheat bread.  We tried of rice milk, and then found flax milk (an excellent source of healthy omegas), which she really prefers in her coffee (LOL, yes, I've always let her drink coffee - the kid was born in Guatemala, I swear they must have put the stuff in her bottles) and on her fruity rice cereal.  I have found a really good rice-based equivalent of Bisquick for pancakes and muffins.  I have yet to try the pizza dough mix I bought.  We have rice cheese.  And the local Asian food store has been great - they have all kinds of rice noodles to replace most pastas  and it is VERY cheap compared to the "gluten free" rice pastas at the supermarket - usually 10-25% of the cost.

Hanging out in the vegan/gluten free aisle of our local supermarket is both expensive and educational.  The other moms with kids on special diets are in awe of how bad ours is compared to theirs, which oddly makes me feel better. It's proof that this really IS as hard as it feels! And one mom there offered me the exceptionally valuable advice that my extra dietary expenses are applicable to the federal medical tax deduction - so get a prescription for the diet from the doc and keep those receipts!

My baby's best friend's mom is a nurse.  She has the diet on her fridge and supply of pills at her house. The school nurse looked the diet over and said,  'I don't think the school can even begin to comply with this." But since our school won't let kids have fruit juice to drink unless there is a medical reason they can't have fat free milk, I did manage to make it possible for her to get juice without creating a daily commotion in the line (which did cause her considerable stress at first).

She is learning how to exchange.  Do I want an English muffin for breakfast or a hamburger bun at dinner?  A small yogurt now or a frozen yogurt later?  "Are we having corn on the cob this week, Mom, or can I have half a bag of popcorn tonight?" Rice noodles and low-sodium boullion is a good source of carbs for this active, growing child, and replaces wheat-based high sodium ramen noodles.

The first week of compliance with this made her lose a pound and complain of hunger. It took some serious work to replace that weight and get the carb/fat/meal/snack ratio back to a tolerable level.

I've never really gone hungry, except maybe a little to drop some extra pounds.  But it made me weep to hear her say it - privately, later, of course. She is already skin over muscle, one of those coltish, long-legged preadolescent beauties who can never seem to figure out where her feet are. A pound doesn't sound like much, but it was VISIBLE.

And at this point, I have the grim feeling that the suffering is really just beginning.

DeeDee