Monday, June 18, 2012

neuro & dietitian appointment

We went to the 'keto clinic' today!  We had a chance to meet with our neurologist as well as the dietitian.  It's so much easier to make a trip to the hospital when things are going well.  They are constantly making improvements at the hospital and it's just gorgeous.  They really make it a fun place for kids.

"Look mom, I got a strike!"

After a few minutes of discussion, we all agreed that we wanted to wait a little bit longer before we made any changes to his medicines and the diet.  The doctor said that it seems we have found our magic combination but at the same time it could just be the last drug, felbatol, that is doing it all.  The only way to know what's working is to start messing with things.  And none of us, the doctor included, are quite ready for that.

Our next appointment will be in September and we all agreed that with the start of school, that wouldn't be the best time to change anything either.  So it looks as if we will wait until December before we start to wean a drug.

Our doctor said that he would like to have another EEG as well before we make any decisions.  He said that there is a chance that his EEG could come back normal.  My heart jumped within me when I heard this news.  If it doesn't come back normal, we can still wean.  And just because it comes back normal doesn't mean that he won't ever have another seizure.  But it would give us a little assurance that we are headed in the right direction. 

Our dietitian added a few products to the database so I can start to make some new recipes.  I'm hopeful that Carbquick and Julian breads will make an appearance soon.

We asked her about letting Ben have sugar free gum.  It has 2 carbs in it, but she thought it would be OK to give him 1/2 of a piece since the carbs come from sugar alcohols and is metabolized differently.  She was going to get some clarification on it, but gave us a tentative go ahead on it.  Ben heard this and shot me the most adorable look ever!  He was thrilled to get to chew gum again!  I think he had forgotten what to do with it, because he kept asking, "What do I do with it mom?"  We had to remind him to just chew and then throw it away when he was done.  He loved it!

However, tonight we noticed a significant drop in his ketones.  :(  The only thing that was different today was the gum.  It was heartbreaking to have to tell him that gum is off his list again.  But he took it in stride.  I was so hopeful about this because chewing gum does help stave off mild hunger.  It would also help with his "keto breath".  And it really does make you feel like a regular kid. 

I've always said that I don't want to wean this diet until we are weaning it forever and this gum experience strengthens our resolve.  We should have waited for more direction.  We were just thrilled to experience normalcy.

A positive about today was that we got his blood work taken at the hospital.  That meant that he didn't get his morning meds for a very long time.  It was hours after he normally takes them.  {Thankfully there were no seizures either!}  But, he had us in hysterics this morning.  He was animated and talkative and just so happy.  It makes me long for the days that he will not have all these drugs in him.
"Come on and buzz already!"

Things we are thankful for:
  • no seizures - just pulling back into area of the hospital brings back so many memories...I'm so thankful.
  • an understanding doctor and dietitian - we really feel they have Ben's best interest at hand
  • his leapster - it helps with his sleepless nights
  • new meal ideas and his willingness to try them (although sometimes with a bit more prodding than others)  :)
Things we are still praying for:
  • tummy troubles - he complains of it hurting a lot at night
  • continued seizure freedom and a normal EEG by the end of the year
  • blood work results to continue to look good
  • renewed strength for Ben to keep going - even though sometimes it's just hard.
Thank you for praying for our little guy. 

1 comment:

  1. I am so thankful for all that God has done and is doing for Benny! We love that little guy!!