Thursday, January 5, 2012

the plan

I'm not really sure where to start.  This post may be a bit fragmented as I'm still trying to piece together all of the information we received today. 

On a great note, Ben has had a great day!  We've noticed a big improvement as the day has gone along.  He's having a few myoclonic or drop seizures every hour instead of a few every 10 minutes. 

But it doesn't negate the fact that we still need to try something new.

So our new plan is to introduce felbatol.  We will start at one dose for 5 days and then increase.  Apparently, felbatol can interfere with the levels of depakote and clobazam.  It raises their effectiveness.  We will have to decrease both of those meds.  We will keep clonazapam at this time because we are essentially making three changes at on time.  Usually with epilepsy, change is made with one thing at a time. 

Felbatol comes with some risk.  We had to sign a waiver.  Apparently a few adults suffered from aplastic anemia (your bone marrow can not produce enough blood cells).  We have been reassured that there hasn't been a documented case in a child, but as a precaution he has to have blood drawn every 2 weeks for the next 3 months.  It stinks for him to have to be pricked, but he's really good at it.  It doesn't phase him much anymore.

We talked a lot about the ketogenic diet.  None of the doctors seem to think its working.  We hate this diet.  But, I know I will never be able to try this again.  The beginning was so difficult - so very hard on him.  I don't think I'd ever be able to watch him go through all of that again.  It's still not easy, but I'd rather just keep going then quit and have to restart in a year or so.  We are both uneasy about quiting so soon.  This has always been presented as one of those last ditch efforts so to quit means that we are really running out of options.  I'm just scared about that.  It has to work, but it's not. But with all the other changes, the doctor agreed it would be best to leave the diet alone for now.  We will hit our 3 month mark on Valentine's Day.  We can talk then about our next step. 

Felbatol has less than a 5% chance of working because he's failed so many drugs.

But as my dad said, that 5% is somebody.  Maybe we'll be in that 5%. 

If it doesn't, then we will do a round of IV steroids.  This involves another hospital stay.  Ben will be hooked up to the video EEG for 3 days and he will be given high doses of steroids.  Then we will be released and he will go home and continue on lower doses of oral steroids.  He can not be on the diet while receiving this treatment.  He explained that it would probably be a short term fix.  We would probably see an improvement for a time, but would have to go back in for another round at a later time.  But this has closer to a 50% chance of working.  Part of me wants to jump to this, but again we have to weigh the risks with benefits.  And if we can get felbatol to work, that is a better plan.

We continued to talk with the doctor about what other treatment options are.  One is the VNS.  This has a 50% chance of reducing seizures by 50%.  But it could take up to 3 years before you see that 50% reduction.  This is not his favorite treatment.  He also mentioned a surgery where they would separate the left and right hemispheres of the brain.  I kinda stopped listening at that point.  We just aren't there.  We will deal with that then - this is now.  Before we do any sort of surgery or implant, we will seek another opinion from someone that our doctor has recommended in Austin.

We are being referred to an opthamologist. There are some seizure disorders that cause the retina to deteriorate.  There is no evidence that this is happening, but with as much trouble as we are having getting seizure control, it would be good to make sure we know what we are dealing with.  Again, I didn't ask a million questions about it.  If it shows deterioration, we will deal with it then.

We have to stay focused on now. 

But that's very hard to do. 

I'm a big planner.  I've blogged about that before.  I want to know the future.  He just doesn't know either.  He said that he feels Ben will probably struggle as he is a difficult case.  He is recommending a speech evaluation because at this point we don't want him to stop progressing or regress - two big issues with Doose.  He also thinks that most likely Ben will honeymoon on this new drug.  But we'll know soon whether its going to work or not.

He said that our experience so far is the progressive nature of this syndrome.  That's why each time we get a break, they seem to have come back worse - mostly increasing in frequency. 

I could probably keep writing forever about this. 

The bottom line is that we are not in control. 
We can not see the future.
We have to focus on today.
We have to celebrate the good days without fear.
We have to hold on to hope.

We are so thankful that:
~ we have Dr. Perry.  He is approachable, willing to try our suggestions, and genuinely seems to care about Ben.
~ Ben had a good day today.
~ we have so many people praying for us

We are praying that:
~ Ben will be healed
~ felbatol will work
~ His peace would cover our minds

Here's another old one, but it's so good...

peace, peace, wonderful peace
coming down from the Father above
sweep over my spirit forever, I pray
in fathomless billows of love

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