New to forum-daughter on Lamictal and Depakote, need advice please

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KatiesMom

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Hi everyone,

I have a daughter, 24 years old with developmental disability and harder to control seizures since she was about 5 years old.
About two years ago, after many many medication trials, our neurologist took away Keppra an Zonegran, and added Depakote to her Lamictal.
We also added natural compounded progesterone to stop her monthly cycle, which took care of the monthly cluster seizures that landed her in the hospital often.
Anyway, we switched neurologists about a year ago, who insisted we start to decrease both Lamictal and Depakote to bring them down to therapeutic range, as both were elevated.
We first started with Depakote, brought her down from 375 mg. 3xdaily, to 250/250/375. This brought her blood levels down to 80.
Next, he had us begin to decrease her Lamictal, when her blood level was up to 24. We decreased to a dose of 125 in the AM and 150 in the PM.
When we did another blood level, it was 19.4, but he wanted me to bring it down one more time.
I hesitated but then gave in, brought it down to 125 in the PM, and wham, we are back to drop seizures. I gave it only 4 days, because her caregiver was not familiar with seizures, and she'd gotten hurt a couple of times.
It has now been one week since I increased that evening dose back up to 150, but we are not seeing the control that we once had.
Our neuro, instead of wanting to increase either Lamictal or Depakote, the very things that were working, wants to add a third medication, Banzel.
My daughter has never responded well to a third medication, and I don't understand, if this increase in seizures is directly related to a decrease in the meds that were working, wouldn't it make more sense to bump them back up?
He is a firm believer that we cannot let the med levels rise in Lamictal, but she was fine when she was on higher doses.
I don't understand, and would appreciate any thoughts on this.
Thank you!
 
Hi Katie's Mom and welcome! You know your daughter best and how she responds to medications. You are her best and only advocate and unfortunaely there are docs out there that are just pricks and refuse to listen to anything or anyone but themselves. He's new to you and your daughter and you either have to push what is best or move on to someone else. I was on Lyrica for a year that caused me to gain 40 lbs and depression but my doc wouldn't change it until I refused to give up on it. I've now lost 10 lbs in 1 month being off it and my mood is getting brighter.
It's unfortunate that there are docs out there that are like that. Keep a journal of her seizures, and her mood changes if any. And if you have to change docs. I have medicaid and am kind of stuck with mine. It's either him or a clinic that makes you wait 6-8 wks for an appt., with him I can get one same or next day.
I wish you the best of luck though whatever you decide and just know we are all here to help.
 
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