Counting Calories

Buster mowing the lawn

The past few weeks have been a bit...overwhelming.  Will's meals take a long time to plan out and prepare, and he eats 4 small meals a day instead of 3, so it seems as though a lot of our time is dedicated to making sure Will is fed and the diet is being administered properly.  We have to check his glucose and blood ketone levels twice daily and we also check his urine several times per day.  All of this keeps us very busy! We have also been very busy trying to get our poor neglected yard into shape again.  It honestly seems hard to find extra time for much of anything lately.

When we first got home from the hospital, things were very rough.  Will was only allowed 900 calories per day, and he was very hungry all of the time.  He often just stood in front of his high chair crying, which absolutely broke our hearts.  We took to eating our meals in the pantry with the door shut because it was just so sad to eat food in front of Will.  Of course, now we have created a monster because after seeing us do that, Jack has started hiding in the pantry and sneaking a LOT of cookies!  After a week, the dietician increased Will's daily calories to 1100 because Will had lost over 3 pounds and gone down a diaper size, and things seem to be much better now.

As our neurologist had predicted, we have been seeing definite improvement in Will since starting the diet but not seizure freedom.  Will has gone from a range of 5 to 10 seizures per day before the diet, to most of the time 1-2 per day, and sometimes they are only occurring every other day.  He has been more aware and interactive with us.  More than anything, he has been very happy, which is absolutely awesome to see.  Although the diet is definitely doing something, we can't conclude it as a success at this point, because in order for his development to move forward we need to completely eliminate the spasms.  So far, that has not yet happened, so we are bracing ourselves for eventual brain surgery but still hoping that things continue to improve.  One other good thing, the blood tests for Will's lactate and pyruvate levels came back completely normal, which means that we can basically rule out mitochondrial disease as a potential cause of his seizures.  This is a huge relief.

Bullseye Rash on Will's Arm

In mid-June we went on a family reunion trip to Pennsylvania right before Will's hospital admission to start the Ketogenic diet.  A great time was had by all, and we spent a lot of time outdoors.  Of course, that also meant we got bit by a lot of bugs while we were there!  We hadn't thought much of it until earlier this week when Will woke up with a rash on his arm that looked just like a bullseye.  Somehow, in addition to everything else, Will ended up with Lyme Disease!  Luckily, we caught it early, so he just needs to take Amoxicillin for 21 days and everything should be fine.  At this point, what is one more drug???  The only problem is that the Amoxicillin (or the Lyme Disease, it is hard to tell) seems to be causing Will to have an increase in seizures again so this will likely delay any decisions we can make about Will's next steps.

Thank you to everyone for following our blog and for all of your continued support.  We hope that everyone enjoys a wonderful 4th of July with their families!