Monday, December 19, 2011

neuro appointment

We met with Dr. Perry this morning.  Ben was so proud to get to tell him, "No more seizures!".  He and the dietitian commented on how much better he looks!  We all agreed that being seizure free is a wonderful Christmas present.  :)

He told us that some of the genetic testing that was done in the hospital has come back negative!!!!  This means that he does not have the genetic mutation found in similar epilepsy syndromes.  We are so very thankful for this news.  It has been in the back of our minds since our November stay and we are thrilled that it's negative.  The doctor did warn us that it's still possible for him to have one of these other syndromes, but it's in his favor if the testing comes back negative.  So, yeah! 

I asked him about clonazapam and we all agreed to leave things as they are for a bit.  We will start weaning that drug in a few months.  Then as time goes on, we can continue to wean other drugs.  The goal is that the diet will take the place of the drugs.  It will probably take us the whole 2 years to wean him off all of his drugs. 

If he continued to have seizure freedom during the weans, then our goal would be to get a normal EEG.  If When that happens, we can then start to wean him off the diet.  The doctor mentioned something about having a 50/50 chance of continued cessation of seizures at that point. 

I was a little shocked and said, "You mean we aren't out of the woods yet?" 
He smiled and said, "No, not even close - you are in a happy place...a less dark part of the woods."

He explained again that Doose is a difficult beast.  Of all his patients, he has about 6 or 7 that have Doose and Ben is the only one who did not respond to meds.  He said that he is on the more 'difficult to treat' end of the spectrum, but he is hopeful because we are in such a good place right now.  He said that honestly when an epileptologist tells you that you have a 50/50 chance it means they have no idea.  He said that there is a huge need for more research in this area because he feels that it's probably 2 different syndromes.  He said for half to get better and the other half not to...there's just not enough research to know why.

We also met with the dietitian and she mostly just encouraged us to keep going.  She's going to try to find some more portable meals.  (We all had a picnic lunch in the car today - pepperoni and peanuts).  We are also going to try to increase his dinner by 50 calories.  It won't increase the amount of food very much at all - especially to keep it within ratio, but we are hoping it'll help. 

We decided to celebrate 13 days of no seizures with a little trip to Chuck E. Cheese. 

So where does this leave us?

We are in a waiting game.  Everything with epilepsy takes time.  The doctor told us that this is the hardest part.  Waiting to see if things are going to continue to work or if they will fail. 

In the words of Dr. Guynes (the beloved former SAGU President),  we have to "hold steady". 

We have to keep on making the diet work and not become 'weary in well doing'.
We have to keep trusting that all of this is in God's hand. 
We have to celebrate today and not be in fear of tomorrow. 
We have to keep believing that whatever side of the 50/50 he lands on, God will continue to be with us every step of the way. 
We have to take things one day at a time.

We go back to see Dr. Perry and our dietitian on April 2nd.  We will probably start the clonazapam wean at that point.  Until then, we will pray for continued seizure control, for good growth on Ben's part, and for His peace and wisdom.

Thank you for praying with us!

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