Tuesday, July 13, 2010

In Which Connor's Neurologist Calls, And We Are At Our Next To Last Resort

So we heard back from the neurologist today.

Not fantastic news.

Connor is maxed out on his current seizure medications.  Currently he's taking Keppra and Trileptal, which have been really nice because he's had zero side effects from them.  However, they just aren't controlling Connor's seizures effectively, and the more of them he has the greater possibility we have for him to sustain brain damage due to the whole not-breathing thing.  Currently Connor's seizures are falling into a pattern where he has one about every ten to fourteen days.  He's had nine in the past four months, and during those four months his seizure meds have been upped six times.

So the neurologist is going to try adding a third seizure medication.  I'm not sure exactly what medication that will be yet-- we'll find out at his appointment this Thursday (made today; normally it's at least a month waiting time for an appointment, but they aren't messing around with him).  And unfortunately, if this third medication doesn't work the plan is to refer him to what they call the "Epilepsy Program."

That would be the program with the neurosurgeons.

Connor probably isn't a candidate for the traditional brain surgery for partial seizures-- where they remove the part of the brain where the seizures start.  This is because Connor's seizures start in the brainstem, which is kind of essential for various things like, oh, breathing.  Now I'm not a neurosurgeon by any means, but since the whole not-breathing thing is the reason the little guy's seizures are such a big deal in the first place, it might be a good idea not to give him any more reasons to not breathe. 

However, he might be a candidate for a vagus nerve stimulator, provided his cardiologist doesn't think it would interfere with his heart function.  You can read more about what exactly a vagus nerve stimulator is here, if you are so inclined. 

But I'm really, really hoping that this third medication does the trick, because quite frankly even though it isn't technically brain surgery I'm not excited about the idea of Connor undergoing a surgical procedure to implant a device that's going to be shocking his brain on a regular basis.  For one thing, the little guy has already been through so many surgeries.  If he had this done, he would have to have surgery again every six years to replace the battery and every twelve years for a replacement device, and any time Connor goes under anesthesia there's a risk.  For another, this is such a new treatment, and doctors aren't sure why it (sometimes) works.  Connor's extremely young to have this sort of surgery done; most of the studies have been done on patients twelve and older.  The brain is a mysterious thing in typical people-- let alone a kid like Connor.  And the thought of having an experimental surgical procedure done on him with no real guarantee that it will help makes me have this kind of knee-jerk terrified reaction.  Seriously-- just thinking about it makes me hyperventilate.

But if this next medication doesn't work, we may be out of other options.  If Connor's seizures quit responding to medicine, having an implant that only has a 40-60% chance of helping stop the seizures would still be better than not having the implant and having a 100% chance of continuing the seizures.  And if that's where we end up going, well, I'll suck it up and get over it, because we need to do what's best for Connor and not what I'm most comfortable with. 

Let's hope it doesn't come to that.



Elizabeth said...

I'm sorry to hear that you're struggling with Connor's seizures. I have been on the seizure road for many, many years with my daughter and can totally relate. I wanted to throw out to you that the VNS has been used on thousands and thousands of children younger than 12 for many, many years now, and I've never heard of any complications from it. I know of five children who got it before they turned six years old. What I HAVE heard is that its efficacy is sometimes no greater than that of the drugs (and that's the reason why we never tried it for my daughter). I do know several kids who have seen some success with it, though, and if Connor's seizures are life-threatening, I think you should go for it. Also, you might not know that most of the drugs that are given to children for epilepsy (including Keppra) are not really approved for children under the age of 12, either! I know how difficult all of this can be -- I hope that you find a solution for your beautiful boy soon --

Bronx Cataldo's said...

I know what is going through your mind at the thoughts of adding mor meds to hopefully controll the seizures. Our Finny is on 4and the keto diet. My belly does one of thoes flips every time they change the dose on any one of them. Now we are going to a Movment Doc to see if he has Dystonia. If he does I guess it means more meds to help control that. AAAGGGHHH.
Hang in there

Greymare said...

Sorry to hear this.

Wherever HE Leads We'll Go said...

I really wish there was an option C!!! Praying the 3rd medication will do the trick and you don't have to go down the road of surgery.

Julia said...

Oh, Jess, I'm sorry to hear about the troubling options and all the stress you're experiencing. I've only sent my child in for surgery once, and it was a purely elective procedure (that did involve drilling into his skull, but I'm sure that has no shock value for you what with everything you folks have been through). Just the once, and it was one of the hardest things I've ever done. I won't pretend that I can fully appreciate your situation and fears, but I do feel for you.

Herding Grasshoppers said...

What a complex and overwhelming situation. Heck, what a complex and overwhelming world to live in.

Praying for you guys - for Connor's seizures to stop (!) and for peace and wisdom for you and Jeremy.


Mama Pickles said...

I used to be a special ed teacher and a few of my students had VNS. I know one mother was concerned about the shocks when she was deciding to get it for her son or not. The doctor was able to shock her on her arm to show her the strength of the shock and it really wasn't much of anything. All of my students who had them showed such improvements. Good luck and I will be praying for you.

xraevision said...

I'm sorry to hear that the current medications are not enough to stop Connor's seizures. It's great news to hear that you were able to get a neurology appointment so quickly, so thank goodness for small miracles. Let's hope this third medication is the key. I understand why you wouldn't want to have him endure another surgery, but I know you will face this bravely, if it comes your way. Sending lots of love your way.

Andy said...

Hey... my little boy has a VNS fitted.. It has helped him with his Epilepsy a lot.

He used to have 20 a day now hes averaging 2 -3 a week. And we are still in the early stages of his VNS treatment.

I hope Connor has some good results with it. My son has seen huge benefits in quailty of life and his development.

I really hope it works out for you as i can see the benefits from a parents point of view.. If you want to have a look at a VNS device I posted on my blog today about it..

Have a read you might find it interesting.


Bye for now.


Andy said...
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