Thursday, September 2, 2010

A piece of the puzzle

I have had high hopes for how the diet would effect Max's energy level and although he is sleeping less I have been puzzled by what we see as an increased weakness in him.  His teacher even commented on it today and then Children's Hospital happened to call an hour later with his lab results from last week. 

Max's carnitine levels have dropped significantly...they are low, very low.   They want to re-run his labs, I said that will be no problem since we are coming down next week.  I was told no, come tomorrow.   The doctor wants the level re-checked, plus one other level, bicarbonate, and then supplements started right away.  When I asked the risks of the low levels and was told heart failure, my own heart then skipped a beat.  However, the very nice nurse assured me that this is common with kids on the diet and not to be concerned, and that supplements three times a day should take care of everything.  But lets face it, when someone says heart failure, not being concerned is really not realistic. 

During the phone call with the hospital, and of course my mad dash to google low carnitine, Max sat happily dipping pork rinds into his diet root beer.   He is such a happy little man.  So blissfully unaware and content.  

So, we are off tomorrow for another Children's Hospital adventure while Caroline is at school.  I think we will visit the north campus to mix it up a bit, it is only 40 minutes away instead of the 70+ minutes we have to drive when we need to meet with any of the doctors.   There is also a Costco near by so it will be great to stop and buy some more bacon, butter and cream in big sizes.


  1. Call the nurse and make sure your orders are in the system so you can get it done at the north campus. The guy who draws blood there is fab-u-lous! But, he only draws what he sees in the computer, and last time, ours weren't updates, and we had to do a second draw later anyway.

    My Max is on Carnitine. It's a good thing we're nearly done with warmer weather, because it can leave them smelling a bit like fish. Hope it was a fluke lab draw, and everything is fine. But, it does help increase energy and muscle strength, so it may be a good thing.

    Hang in're doing great!

  2. Oh! Hope you can try the closer campus without any problems and that you can get things sorted out soon. Also, have fun with the mega bacon, butter and cream - I'm not sure how you do it, even typing that makes me a little nauseous. :)

  3. Oh yikes! So scary! Heart failure is not something you want to hear when it applies to your sweet Max. Good luck tomorrow.