Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

After Lily having two to three grand mals this weekend (each day) after we upped her meds so much that she can barely stay awake. I called her neuro Monday AM and had to leave a message, Andrew said it was mean, but I didn’t think so.
I got a call back with an apology and a promise that we can be off this study.
We gave it 9 months! 9! She had no grand mals when we decided to start this thing. Now she is having them and often. I’m done. I said I want her back on Vigabitrine, I know he doesn’t think it is a cure all, but considering all we went thru before we tried it and then when we put her on it although it took some tweaking, her grand mals stopped. So I have to try it again and try it for good. Get her back to a high dose and go from there. She will have to be weaned off the study drug that has helped with her drops, but like I have said a million times, I take drops over grand mals any day! I know Lily agrees with me on that. So we just have to get the go ahead as to how we start the wean and start adding Vigabitrine. I know we have to go slow and I know there are side effects to Vigabitrine, but I know that grand mals are the worst thing to deal with and I have to see that they are stopped. Enough is enough.
Sigh.

One thought on “And I finally did it!

  1. Lesley says:

    Good for you. I agree. Enough is enough.

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