Wednesday, November 30, 2011


We met with Will's neurologist today. First to discuss his seizure on Monday, and second to put together a plan for managing the next couple of months.

Our neurologist is a very no-frills kind of guy. Serious. Statistical. Stoic. First thing he has me do is explain Will's seizure on Monday. Then we walked through his seizure disorder progression from June 2010 to present. He nodded and took notes. I felt emotional.

So after taking him through a description of the seizure, we start to discuss the seizure medications that we have tried with Will. Medications that haven't worked. Neurontin. Keppra. Carbatrol.

Though it seems impossible, Neuro Doc's face turns even more stoic. Then he tells me:

When treating seizures, after you have tried and failed with 2 different medications, the likelihood of actually finding a medication that controls the patient's seizures is less than 10%.

This is not the news I was hoping to hear. I wanted options, plans. I don't expect promises. But I was certainly deflated by this news. He turned back to his notes for a minute.

When you deal with bad news regularly and doctors who aren't always sure how to give it, it would be easy to get upset or implode or deflate when getting MORE bad news. But I came for a purpose. I reinflated.

OK so maybe we won't ever find the perfect medication for Will's seizure disorder. But what are the other options. Surgery? Diet?

Immediately, he loses his stoicism. He became animated, excited. He starts telling me what when you've gotten to this situation with medications being ineffective, surgery is the next option to discuss. Though the thought of more neurosurgery is scary, part of me felt some relief that after multiple failed medications, we were not out of options.

Neuro Doc goes even further to tell me that whenever we make the decision for surgery, he would support it and would start the referral paperwork. I guess statistics and history are really against us coming up with a medication combination that will control Will's seizures.

As you would expect, the epilepsy surgery is very involved, comes with risk, and takes months to prepare and plan for. I will go into the details of the surgery in a later post, because at this moment, I have a lot of research to do before I will feel comfortable explaining it.

In the mean time, we decided to keep Will's carbatrol dosage the same and increase his dosage of Lamactil. Will currently takes 5mg of Lamactil per kilogram of body weight. The maximum dosage allowable is 20mg of Lamactil per kilogram of body weight. Therefore, we have a lot of room to increase his dosage, but we have to do it slowly to avoid potential side effects. If we get to the point where we exhaust the maximum dosage of Lamactil before we've made the decision about the surgery, there are 2 other drugs remaining that would be good candidates for Will's seizure control. Unfortunately they have intense side effects and that whole 10% chance of working makes things seem a little futile. But of course that won't stop us from trying.

There are a lot of very good hospitals that do the surgery that was proposed for Will. The 'best of the best' in the eastern half of the US is the Cleveland Clinic. Do we have any followers who have experience with the Cleveland Clinic? I would welcome any insight into the hospital, surgeons, etc.

We have so much to think about. And for the third time in the past 4 years, we're in the uncomfortable position of having to make a decision about a potentially life-altering surgery for Will. I am happy that we have options, thankful that we have time to research those options, and glad that we've had time to develop an understanding of medicine over the past couple of years, so that we're able to think this through and really understand the ins and outs of the surgery.

1 comment:

kylie said...

love you guys and Will is in my prayers and heart.