Wednesday, February 16, 2011

Mayonnaise and Medical Food

Yesterday I headed out early to get Max to his monitoring appointment at The Children's Hospital for the Modified Atkins Diet.  It had been over 3 months and he was due for more blood work and a visit with his dietitian and nurse. 

Max didn't even make a sound when he was stuck and 6 vials of blood were drawn.  I on the other hand, made quite a fuss.  The labs were coded that Max had intractable epilepsy and no one could tell me if they were drawing for his serum ketone levels or not.  A few phone calls later it was cleared up, but I was left with an elevated heart rate while Max smiled and asked if I wanted to play Batman with him.  He is SO used to this, it doesn't phase him.  I wish I could say the same.

After the lab work we rushed upstairs to our appointment.  I found a neurologist waiting in our exam room for me.  Now this turned my day around, a doctor waiting for me, instead of the other way around.  There is nothing like a little rock star treatment to help you forgive clerical errors.  The neurologist wanted to include Max's chart in a database he is putting together of all the kids they treat.  It was nice to meet another neurologist and he was great with Max.  I liked the way he treated him and talked to him.  Max was not just an interesting rare disorder, he was a person!  I thought the database was a great idea, so I signed the pages of forms to release his chart.

Next we got to meet our new nurse and visit with our wonderful dietitian.  The nurse was genuinely delighted with Max and they both were so forgiving about the volume of the iPad. 

With each diet visit I worry we will hear that Max needs to be switched to the Ketogenic diet.  We escaped that fate by a small margin yesterday.  Max is not gaining any weight, and he has gotten taller.  This is not good a good combo.  He is not getting enough calories.  They told me that his back sliding in January is proof that at times he was literally starving.  That was tough to hear. 

Thankfully they had a solution, medical food and mayonnaise.  The medical food is a powder called Ketocal.  It has a lot of fat and calories in it. We have tried it before, but Max rejected it after a few tries.  The dietitian handed me a new product, a juice box filled with vanilla Ketocal, for us to take home.  She directed that he should drink one a day.  I was also given a recipe book on how to make different foods with the Ketocal powder, and I was given more sample cans.  Then she started talking about mayonnaise.  My stomach was turning, really mayo?  Well I have gotten used to butter, I suppose we can do this. 

On the way home I tried to pump Max up about the drink box.  I told him it was very special and it would give him big muscles.  Max started to cry and through his tears said, "Noooooo, the new big muscles will push out my old muscles, noooo!"  I changed my approach on the fly.  I told Max that this drink was only for super hero boys.  That Caroline would NEVER be allowed to drink it.  He asked for the drink that second.  I pulled over and gave it to him.  He drank it, loved it, and then announced his burps smelled like vanilla.

Once home, I attempted a jello/pudding recipe with the Ketocal.  I messed up the first batch by using regular jello, bummer, there goes $10 worth of powder.  The next try worked well.  I created a single serving of pudding that had 20 grams of fat in it and 200+ calories, but only 1 carb!  The best part, he called it cake, ate it right away and then asked me to make more. 

Then came the mayo.  I waited for Ray to get home.  I made him spoon it in Max's mouth.  I had visions of my sister passing out, she hates mayonnaise with a passion.  Guess what, our super hero fat burning boy loved it and wanted more.  So now we feed our son butter, mayo, medical food, hot dogs, brie, shrimp, nuts and lunch meat.  This just feels so wrong. 

Today I ordered a case of the drink boxes and one canister of powder, just shy of a month's supply for $158.  I spooned my first spoonful of mayo in Max's mouth with his breakfast of cheese and bacon.  Tonight he ate a bowl of it and he calls it soup. 

If this can help Max gain weight and keep him on the Modified Atkins and off of the Ketogenic it will be well worth it, but it will take some getting used to.  Thankfully my super hero is already with the program.

I wonder if he would like this product? I checked it is low carb!


  1. Glad you got a calorie powder. That's the only way our Max gets enough calories.

  2. Augh! I just accidentally deleted my whole comment. Let me try again...

    For good sources on high-quality ketogenic foods, you might look at some paleo/primal sources like Mark's Daily Apple: Not all of the food is ketogenic, but much of it is. In any case, it's very friendly to good fats (although those might not be what you think), and fat is the key to not starving on a ketogenic diet!

    As for the health risks of eating high-fat, people who eat a high-fat paleo-type diet almost uniformly report better lab values and increased well-being -- despite the absence of those supposedly healthy grains and much dreaded saturated fat -- or rather, because of that, I think. The standard nutritional advice seems to be seriously wrong, from what I've seen. (And America's expanding waistlines agree with me!)

    Personally, I don't store-bought mayo due to the kinds of oils that they use. However, I do eat lots of (virgin, i.e. unrefined) coconut oil, which is yummy enough to eat from a spoon. That might be a good source of delicious and high-quality calories.

    Best wishes to you and Max and the rest of the family!

    -- Diana Hsieh (formerly Brickell)

  3. Diana, great to hear from you! Thanks for the wonderful information. We are using coconut oil in the candy I make him. I will try giving it to him by the teaspoon today. He is right next to me demanding a snack, fingers crossed!

  4. Oh, this makes me want to throw up a little in my mouth. Mayonnaise! Ugh. But, I'm happy for the powder, and also for the addition to mayo - I bet any change or new addition is welcomed to him. What a trooper he is!

  5. This sounds hard even to a mayo lover. But what a boon it is that Max handles it so well! Hang in there, Mom and Dad.