Friday, January 20, 2012

a record breaking kind of day

14 days is our new record!  :)  :)

We haven't had 14 straight days of seizure freedom since before July 5, 2011.

Here's a recap of what we are doing to achieve seizure control:
~ ketogenic diet at 3.5:1 ratio with a 400 calorie meal  3 times a day and a 50 calorie snack twice daily
~ Clonazapam 3 times a day
~ Clobazam 3 times a day
~ Depakote 2 times a day
~ Felbatol 2 times a day
~ phosphate, calcium, multiviatamin, vitamin d drops

When the seizures are here, we tend to focus on the moment and figuring out a way to get the seizures to stop.  But now that the seizures are gone, we find ourselves thinking of the future - even planning a bit.  This is also what happened on our last 13 day stretch.

Valentine's Day is the 3 month mark for the diet.  We had talked about weaning the diet at that point, but now that things are going so well I'm not sure it would be worth the risk to quit.  The frustrating thing about epilepsy is that the doctors are not always certain about the whys.  I don't think they really know if it's working or not.  If we take it away and it was helping even a little, is it worth it to see the seizures return? 

Instead, we would like to wean clonazapam.  We have such a love/hate relationship with this drug.  It is not intended for long term use.  It's suppossed to be used as a rescue drug for cluster seizures.  It is known that the body builds a tolerance for it and it fails.  If we can continue to have seizure control without clonazapam, then I will feel better about believing that we have found our magic bullet.

Then, if things continue I think we would still prefer to continue to wean drugs vs. the diet.  The diet is a lot of work.  It's frustrating beyond words.  It's isolating.  It's inconvenient.  BUT the drugs have such awful side effects.  It's really about choosing the lesser of two evils.  It's hard to know what to do.

But we can't get ahead of ourselves.  We will take each day as it comes knowing that God is going to give us exactly what we need to face the day.

Today we are thanking God...
~ for 14 wonderful days
~ that Ben is doing so well, aside from some speech issues and droopy eyes, he has no other noticeable issues from our last bout with uncontrollable seizures
~ we received another anonymous card with a generous gift - if you are reading - thank you very much
~ our team for the Dallas Epilepsy Stroll is growing - click here to find out more 

We are of course continuing to pray...
~ for seizure freedom forever this time!
~ that we can wean clonazapam when its time
~ for our little friend Ethan - that he will also be seizure free soon

Thank you for rejoicing with us and continuing to pray for us.

3 comments:

  1. I agree with keeping the diet, and weaning drugs. It would be so nice to not have all of the struggles that come with the diet, but if it is working it is so much better than the drugs.

    We are tweaking still...I am frustrated but wanting this to work as we have never seen any improvement with drugs.

    God is working...and I know that a miracle is coming, and when it does there will be no mistaking that it was all Him. :)

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  2. Laurie, I'm so happy!! Our family is rejoicing with you guys! I ran into a former student on Wednesday and she hugged me and asked about Ben. I love that so many people are praying for you guys.

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  3. Praying for this great run to stretch into months and years! *hugs*

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