Tuesday, March 12, 2013

difficult decisions

Ben started vomiting again on Sunday night.  I hate seeing him like this.  We've been using zantac and miralax to treat his tummy issues but it doesn't seem to be helping.

While kneeling in front of the toilet, Ben looked up at me and said, "Can we tell the doctor that we hate this diet?"  And at that moment, it became extremely clear that it's time for a change.

And it is time for a change.  We are a few weeks removed from the clobazam wean and so it's time to either start weaning depakote or consider removing the diet. 

This has not been an easy decision process at all, but we've prayed about it, talked about it, consulted with others, and have come to the conclusion that it's time for the diet to end.  We need to wean the ketogenic diet. 

Here are some reasons:
  1. the vomiting and constant tummy pain
  2. he is growing taller, but continues to maintain his same weight - his growth chart curve has been affected
  3. his compliance has become increasingly difficult
  4. he gags on his pancakes and can not tolerate macadamia nuts
  5. we are running out of fat sources for him that he can keep down
We also have to look back at his history.  In December 2011, he hit his worst spot ever.  The seizures were relentless.  We took him to the hospital and discovered that his depakote level had bottomed out and we gave him depakote via IV to help bring it back up.  So we know that this drug has been effective before - though not on it's own.

It wasn't until we added felbatol that the seizures were controlled.  Adding felbatol was a desperate measure.  We had just started the diet and in hindsight we should have spent more time tweaking the diet before adding this med. 

But it worked.  We had seizure freedom.  And thankfully we have never seen one since. 

We of course know the dangers involved with depakote and felbatol.  It was our goal to med free before we were diet free.  It is still our goal to get him med free and I believe that will happen one day soon.  But it has come down to a quality of life issue.  Ben is not happy - he is obedient and does what we ask of him, but it has taken its toll on him physically and emotionally.  When I did a little birthday interview with him last week, I asked him, "What is something that is hard for you to do?"  His answer was, "eating with other kids." 

I know that there are those that will question our decision.  And trust me, we have questioned it ourselves.  We do believe that the diet has been effective, but because we had so many meds on board and then added one when starting the diet that we never really could say - YES! the diet has been our sole miracle.  I've seen it be the miracle for so many kids and I do believe it has been beneficial for Ben. 

We realize that he has not been on it for the recommended two years and no where near the ideal of being on the diet without drugs and seizure free for a length of time similar to that.  We know that other kids have been able to be on this diet for years and years and some even plan to be on it for a lifetime.  And we know of moms that have weighed and measured meals far more than can even be counted.  To those kids and their parents, wow - your strength and persistence should be praised. 

So, what does this mean? 
  • We have taken the initial step down.  We are not at a 2.5:1 ratio and will stay here for three weeks. 
  • Then on April 1st, we will step down to 2:1. 
  • Then on April 22, step down to 1.5:1. 
  • Then on May 13, we will do a "Atkins diet".  She said we wouldn't have to weigh or measure anymore.  I asked her how do I do that?  She said we will talk more when we get closer. 
  • Then on May 27th, Memorial Day, we will officially be diet free and as our dietitian said,  "we can take him out for ice cream".  :) 
That's the plan. 

I'm thrilled!
and scared.
and hopeful.
and optimistic.

And mostly filled with faith.  I just know that this ordeal is over for Ben.  I believe that with all of my heart that he is not going to ever have a seizure again.  Never.  And removing diet therapy is just the next step. 

So today is a good day. 
Tomorrow will mark month 16 of diet therapy. 
In 62 days, I can put the scale away. 
In 76 days, I can let him scoop out his own portion of food from the dinner table and let him eat the biggest bowl of his beloved beans from Nana.

Let the countdown begin!
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4 comments:

  1. Such hard decisions. But good for you; it sounds like you came to the conclusion you needed to. And take heart that if the diet did benefit him, he will carry those benefits forward.

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  2. I am sure these decisions were harder than words can say. Your post has such hope it in though! So excited for you all that the constraints of the diet will soon be a thing of past. Praying for an easy transition and continued seizure freedom!

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  3. I will pray for Ben and all of you. I know what a difficult decision this was to make! Here's to never, ever seeing another seizure again. XO

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  4. Wow! Lifting you and your family up in prayer. I just read the comment that you left on my blog. I have been following you as well :) You are one strong amazing momma with an equally amazing boy! Have a wonderful weekend!

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