Friday, April 10, 2009

Bennett and the Epileptologist

Yesterday, at 4:00 PM, we had an appointment scheduled with an Epileptologist to review Bennett's treatment and make various decisions about where we are, where we are going, etc.

For those of you who do not know, Infantile Spasms (a soft, un-assuming description that REALLY needs to be changed to reflect the severity of it) is a form of Epilepsy that children get. Yeah...EPILEPSY. I've had a hard time explaining that to some people without writing a very, very long book here about everything I know, or everything I THINK I know, about it.

But of course that's hard to do really, because every case is different, every person's experience with their child is different, every child seems to have different kinds of seizure types at different times/intervals/severity, every child (seemingly) has a different treatment. I am a member of one forum where there are no two children with the same exact cause/treatment, and there are LOTS of active members. How freaky is that? Not one match. Close on a couple of us...but no cigar.

So we meet with the Epileptologist yesterday at 5:28 PM. Yeah you heard right...the appointment WAS at 4:00 PM as mentioned above. We were in the exam room at around that time, and we didn’t see Dr. Ep until 5:28. Now, I am not bitching about that...I get it, people are busy, appointments go over. I'm just stating fact here. And...as a parent of a kid with this extremely serious condition I expect that the parents who met with Dr. Ep prior to our appointment probably had lots and lots of questions and I am glad certainly if Dr. Ep took the time to answer them. He took his time with us, even though we were the last of his day, and lots of guys would have been trying to get home and grab some chow or see their own family.

He lays it all out for us, and he tells me things that I actually already expected him to tell me. That's the beauty of research and being prepared. It also tells me that he is on his game, and understands what we are dealing with here. He goes above and beyond and takes us into his office where his computer is and shows us the visual MRI slices of Bennett's Focal Cortical Dysplasia.

That was hugely helpful to me frankly...I am a visual person and have been wondering about it for a LONG time...I had looked at other MRI films on the net of the condition and wanted to see how Bennett's brain compares. I could now, if needed, draw it, and that helps me. Dunno why.

He explained that we'll never know the why, which I knew. We can’t know. The FCD might have been caused by a trauma to the brain in utero, some temporary lack of oxygen that caused Jen to go into labor prematurely, could have been after he was born, could be genetic, could be this, could be that. We'll never know the why, but I accept that, no problem.

Besides, all I really care about is the 'What Now?' and the 'What Next?'.

The 'What Now?' is that Bennett suffers from epilepsy because of this FCD. This area of the brain sends out wacky electrical impulses to the rest of his brain, the rest of his brain can’t handle it, and he has a series of seizure responses. I may be over simplifying it there, but it’s the best way I know how of explaining it. This electrical activity is apparently there a lot of the time, though the seizures are not constant, and it is making it VERY difficult for his brain to learn anything new, so he's kind of stuck in one place.

He isn’t regressing though, and that's a good sign. A sign of what yet I do not know, but a good sign.

So what's the 'What Next'? The next steps are:

1. To continue weaning off the ACTH. That wean ends next Friday.

2. To continue increasing the dose of Topamax VERY aggressively over the next ten days to see if they can stop the seizures.

3. Depending on how things go over the next ten days, a possible introduction of a second drug, Keppra, might occur. Keppra, another anti-convulsant, can apparently work in tandem with other anti-convulsants (which Topamax is) with minimal side effects.

4. A 45 minute EEG will take place at the end of these next two weeks to see what the brain activity is looking like. Dr. Ep explained that sometimes the EEG can reveal additional data (if the seizures are there but milder perhaps the harsher hypsarrhythmia patterns on the EEG might be normalized, etc.)

5. His case is being presented at some meeting next Wednesday to their whole Neuro/Epilepsy group...I think that is some kind of teaching hospital thing, though I am not sure. I think this is where ideas get bounced around, experiences shared, stuff like that.

6. In one month we are supposed to be meeting with a second Epileptologist to (I think) discuss further options if the condition has not been improving.

7. Materials and documentation are being prepared to send to a doctor who is considered by many to be one of the leading experts in the field, whom one of my fellow IS bloggers refers to as Dr. Rockstar and that just tickles me greatly, and this Dr. Rockstar has been contacted by us and has responded and is aware that we will be sending him the stuff for review and possibly doing an additional test either at his hospital or somewhere in state (in our insurance network) and sending him those results. That's all to determine surgical candidacy, if needed.

Bottom line is that the first attempts are to stop the seizures with medication...and if you can and you don't have to cut into a child's brain and start yanking stuff out, that's a good thing. But we want to be looking down that road and being prepared somewhat for it if the need arises, which it might, we just don’t know. From where we sit right now, he is POSSIBLY a candidate for a surgical procedure if the seizures do not stop, but we also do not have all the data, so I am not going to sit here and engage in false hope and undue speculation. Remember, I said POSSIBLY. It's all a big IF, but we are at least keeping all the options open and exploring as many as we can.

And that's the real trick...and it’s something that parents of children going through this understand completely and utterly, but other people do not. Managing the day-to-day roller coaster ride of emotions and plans of treatment, then managing the outcomes/results of that treatment. Some people use faith to help them, which I do wish I could get back...sadly that's been gone a long time.

That's all I have for today...we'll do the best we can to have a fun Easter for the kids, make sure we get our ducks in a row for continued exploration of any treatment option, and hope for the best with the latest plans...all we CAN do really.


7 comments:

  1. UGGH I hate waiting! We once waited 5 hours for the neurosurgeon, but we had driven all the way to Boston, what could we do!

    At least you have a game plan for the next few weeks. That certainly helps matters!

    We have those same jammies! I loved the Target thermals because they were good but cheap. It stinks they stop at size 4!

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  2. At least Bennett was kind of tired and slept through a bulk of that hour and 28 minutes.

    I love the jammies too...and this photo is around 2 weeks old and these already don't fit him because of the ACTH weight gain. I'm gonna snap a whole bunch of new pics over the weekend, I have been WAY to remiss on that and pics of my other boy Carter.

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  3. That's an excellent write-up, Ken.

    It sounds like a wonderful plan of attack. I can say that #5 - the meeting of the minds as it were - is one of the things that got Jill's eyesight back in 2004. She would be completely blind if it hadn't been for that and now she can see without glasses and drive a car.

    So I do have hope for Mr. Bennett. Here's hoping for minimal side effects from the Topomax/Keppra treatment.

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  4. I love your daddy-style. *smile*

    There's SO much else in my heart. Just having trouble getting it flow through the fings.

    But know that I "get" it. ALL of it!

    ...danielle

    ps. Tell Mrs.Blogzilly that your little man is equally as adorable as mine!

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  5. Hey Ken,

    I'm happy to hear that there are positive steps with everything that is happening with Bennett and that you have had some questions answered. When you talked about the meeting of the minds, I totally pictured House leading the group.

    I hope your family has a blessed Easter and that things improve for Bennett.

    Always in my prayers...

    Travis (Xander)

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  6. Thanks for sharing your homework! As I've said, Bennett has the best on his case, starting with his Dad.

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  7. great that there's a plan of action! I don't know why, but having a nice, numbered list like this definitely makes me feel better. Still thinking about/praying for you guys every day....

    Happy Easter!

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