From Depakote to Keppra: No Thank You

First of all, if you have read the other posts that talked about Rach getting diagnosed with epilepsy (both times), I want to say thank you. I know they were a bit long but now that we are caught up, the new update post shouldn't be that long. So with that, let's get started with where we're at right now.

The New Doctor ~

In June we went to a new doctor, an epilepsy specialist, and we had high hopes. Like I said in the previous post, Rach was doing well on Depakote at first but as time progressed she started having the myoclonic seizures again and less seizure free days a month. She is also experiencing some side effects like weight gain, some hair loss, and just not feeling great. 

Her lab work has also shown a decrease in RBC, HCT, and then raised MCH, also she is low on Folate and Magnesium.

So our first appointment was for a 20 minute EEG. We were hoping for a sleep deprived EEG like her old neurologist would do but that's not what this doctor wanted. We knew by her current seizure control that catching a seizure in a 20 minute EEG was very slim and even though she stayed up a touch later and woke up early no seizure activity was found. 

It was a seizure free day. Sadly it was one of the last we've seen.

Our next appointment was the following week and we both really had high hopes that everything would go well meeting the new doctor. At first things were going well until he suggested weaning her off Depakote and starting her on Keppra. He said overall it was just a safer medicine. 

That was fine until Rach asked a question about the medicine that the doctor didn't like and he said, "You don't need to read things or talk to people on the internet because they will put ideas in your mind, you either need to trust me as your doctor or find another one." 

Now let me say that I understand to a point where he's coming from and I believe doctors should be respected, but I also believe a doctor shouldn't mind questions, they should work with and listen to their patients concerns without getting offended. I kept quiet, which is rare for me, but I'm trying to teach Rach to advocate for herself and she did just that. 

Rach told him that she was willing to try the new medicine but she will still talk to others in the epilepsy community and continue to learn about the treatments she is being given. I was so proud of her for standing up for herself and being respectful at the same time!

The Medicine Change ~

So we were given a schedule to wean Rach off the Depakote, as well as one on how to start the Keppra. When we arrived back home and really looked at the weaning schedule, I was worried that she would be coming off the Depakote too quickly with not enough Keppra to make up the difference, but I was trying to trust the doctor. I wished I would have trusted my gut. 

To make a long story short, let's just say I had to call and question the schedule because Rach was having a lot of myoclonic seizures that were starting to cluster and I felt like a tonic-clonic was about to happen. Sure enough, I was told whoever wrote the schedule out had made a mistake and we should slow the process down while adding more Keppra. We did this but instead of getting better Rach was getting worse. 

Not only was she having even more of the myoclonic seizures, but she was also nauseous, sleeping all the time, and getting to where she couldn't stand the thought of food. 

When I called back they raised the Keppra even more, and they put her back on her full dose of Depakote. I asked if there was a chance the Keppra was making her worse but they said there was no way that was happening. 

So we tried the full dose of Depakote and the 3,000mg of Keppra but things really took a turn around Thursday. By this time it had been one month and in that time Rach had gone from having about 30/40 myoclonic seizures a month to over 300. 

She was not only having all the problems mentioned above but was now severely depressed, and also she could get extremely angry very quickly. 

The doctor was out of the office and I couldn't contact the nurse until Monday so for the first time in our epilepsy journey, I lowered the dose of Keppra myself. I was able to talk to the nurse and she finally agreed that the Keppra was causing problems but the doctor was out of town so she would have to call him and see what he wanted to do. 

When she called me back I was told that he was only willing to lower her to 2,000mg a day. I was beyond frustrated and also worried about Rach.

Lowering the dose did help which confirmed that Keppra is not her medicine so I was able to convince them to start the weaning off of it completely. They added a very small dose of Klonopin to be taken daily and that seems to helping a great deal so hopefully soon Rach will be feeling a little more like her old self.

As always thanks for reading and please keep Rach in your thoughts. The last 2 months have been rough for her. Also if you have any experience changing medications or struggles with a doctor please tell me in the comments below. I would especially like to hear of any experiences with Keppra or Klonopin.