Saturday, November 30, 2013

a heavy heart

My heart is heavy after learning about the passing of sweet Matilda
 
Although I have never met this family, I have followed their journey from an incorrect Doose diagnosis to the terrible diagnosis of Batten Disease. 
 
When Ben was tested for that disease, I thought my heart would crumble...I can't imagine walking that journey.
 
There are just no words...just prayer that peace will cover this family and that the hope of Heaven will sustain them.
 
*****

Wednesday, November 27, 2013

thankful

 
We are thankful this year for so many blessings - including Ben's health.  This year we all get to enjoy the same foods during the Thanksgiving meal.  He has requested "mashed botatoes"...I think we can make that work.  :)
 
Happy Thanksgiving!


Thursday, November 14, 2013

neuro appointment

We went back to the neuro this week.  It was an uneventful visit really - yea!!!  :)

His blood work all came back in the normal range.  Normal!  His white blood cell count hasn't been normal for a long time.  Since we started felbatol really.  His doctor thinks that the addition of felbatol to the Depakote is what was causing the issue.  Since he is off Depakote, the issue may have resolved itself.  But we will recheck labs again in 3 months to be sure. 

I reminded him that the two year mark is quickly approaching for us.  At the two year mark, epilepsy is considered to be in remission.  You can begin to wean meds and move on with life. 

I was disappointed with his reaction to my reminder.  He said that the research only supports that information for patients with consistently normal EEG's and for those with easy to control seizures. 

Ben's case doesn't fit within either of those categories.

Although we hadn't planned on weaning meds in January, I still liked the idea of being considered in remission.  But we will just continue to wait.  We will continue to count each seizure free day as a huge success - because it is!  We will keep using felbatol at his current dosage and check the levels in his system.  With time and growth he could potentially get to the point where his level is below therapeutic.  If he maintained seizure freedom at that point, we would know that it was time to wean.  We just have to wait at this point.

And weaning may be closer than we think.  I never imagined that we would have been able to wean the diet when we did.  You just never know about tomorrow.

He told us that about 15% of Doose kids will relapse.  Even after being med free and seizure free.  Even after normal EEG's.  We are always praying that this is not in Ben's future. 

Before we decide to start weaning, the doctor wants to do another EEG to make sure that Depakote wasn't normalizing it. 

We don't have to go back again for another 6 months.  That was like music to our ears.  We were on that schedule when things started in 2009.  6 month visits.  That feels like a huge step in the right direction.  :) 

 
We spy a seizure free future for Ben!



Thursday, November 7, 2013

22.


22 months without a seizure!
That's almost 2 years!!!!!! 

Friday, November 1, 2013

champions

November means its Epilepsy Awareness Month!

You have to watch this video...kids are amazing. 

They are strong, brave, and so resilient. 



I'm not sure any of the children in this video are dealing with epilepsy, but we know some fighters and would like to send this message of encouragement to them. 

So - Ethan, Gabriel, Jilly, Jade, Joshua, Nora, Jonah, Cole, and so many others...keep fighting, keep roaring, you are champions!

And to our own little fighter - we love you Ben!  The miracle we have witnessed is amazing.  We hear you roaring!  Keep trying, keep believing, you've got this.