Seizure Free Day!

Yes, you read the title correctly! Rach finally had a seizure free day on December 14th, 2022, and had a total of 3 seizure free days in December. This is the first time since June 18th of 2022 and we are so thankful!

And more good news is not only did she only have 64 daytime seizures and 3 seizure free days in December, but January 2023 was even better! She only had 48 daytime seizures, very few nocturnal seizures, and 7 seizure free days! 

If you haven't already read the other post about Rach's journey the last few months I'll give a short recap.

In June of 2022 we went to see an epilepsy specialist and he wanted to switch her from Depakote to Keppra, but it went horribly wrong. Rach started having more seizures and her quality of life just really went downhill. She slept more than she was awake and she had over 400 daytime seizures that I counted the month of July, so as you can see it was rough. 

This is what changed and what I think helped.

Even though she was off Keppra completely in September, she was still having a lot of seizures so the doctor raised the Klonopin from .5 mg to 1 mg a day and we thought it would help but sadly it didn't.

When I called the doctor back to let them know she was still having at least 200 daytime seizures a month they wanted to raise the Klonopin again but it really didn't seem to be helping.

It was like the more extra medicine she was taking, the more seizures she was having. Also Rach said she just really didn't like the way she was feeling on the extra Klonopin. So we started tapering the Klonopin back down until she could stop taking it. 

She took her last pill on Oct 27th and by mid November we were seeing a positive change. Not only were the seizures decreasing in frequency but also strength, and she was able to stop having to take long naps everyday. She was starting to get that spring in her step and that beautiful smile back on her face.

As of now she is back to taking 750 mg a day of Depakote and then around her cycle she takes 0.5mg of Ativan. 

We have also started to add more foods to her diet because I noticed on her last round of blood work that her Magnesium was at the border of low/deficient, her Folate was low, and her vitamin D was also low. 

The doctor didn't seem concerned about that at all which I really don't understand because when I'm low on these things my doctor wants me to take supplements so why would it be different for her?  

I've said this before but I'll say it again now. I'm not giving medical advice, I don't claim to be a doctor or be more intelligent than one. I'm strictly sharing with you what we have been through, what the doctors have done, what we are doing, and what's working and what's not.

We have to go do another round of lab work in the next couple of weeks so I will see if the changes we've made have helped. I believe in my heart they have but the test will confirm it. 

I also wanted to use this post to say thank you to anyone who has been following Rach's seizure journey in the past year. We had some low points, but I believe things are starting to get better. And I hope that it’s provided some hope for anyone going through a similar situation, that  things can always get better even if they aren’t perfect!