Changing from Lamictal to Dilantin

[tmhoang]

Hi I am new to this site and have a question regarding medication.
My daughter is 6 years old and was slowly titrated up to 175mg of lamictal in about a year. When she hit 175mg 3x/day her seizures got worse. At the same time her Neurologist began lowering her trileptal dose. After quite a few prolonged seizures and hospitalizations it has been decided to put her back on her original trileptal dose, raise her keppra and take her off lamictal. Her Neurologist is replacing her lamictal with Dilantin. The orders for weaning her off lamictal is as follows 125mg 3x/day for one week
75mg 3x/day for one week
25mg 3x/day for one week
then stop

She started Dilantin today at the lowest dose, no information for going up. She also received her VNS and had it turned on last week, and we increased the setting today.

If anyone has any experience I would greatly appreciate any advice
Thank you very much

 

[acpollard2010]

im a grown adult can only share my experience dilantin was bad for me im on lamictal its not good for your child obviously but there are other alternatives meds topamax,keppra then again things to talk about with a neurologist and as far as vns u take good with bad it helps with seizures to a point bad hurts mainly mouth area throat,teeth as u get higher.just my exp. had my vns 6yrs april 28

 

[Nakamova]

Hi tmhoang, welcome to CWE!

I also switched from Dilantin to Lamictal, rather than the other way around. Dilantin might work in the short-term, but the side effects can make it problematic for long-term use. For me, it caused acne, suppressed my appetite and made me sleepy. Over time, it caused gum overgrowth, so it's important to have frequent dentist visits to watch out for that. Long-term, Dilantin interferes with calcium absorption, so it's bad for bone growth and stability.

It can be very tough with multiple meds to figure out what's working and what isn't, especially since the meds can interact with one another in different ways, and they all can cause side effects. At some point, it might be worth seeing if your daughter can be stable with two meds or ideally just one. Along with the VNS, she has an awful lot going right now with her brain and body.

Best,
Nakamova

 

[jyearta]

I have been on dilantin for 41 years now. Dr. have tried many other medic. but I have not been able to tolerate them.

The only medic. that have my seizures under control (FOR THE MOST PART) IS dilantin along with clonazepam.

I'm now dealing with the long term use of dilantin. Memory, B-12 defic.

 

[Endless]

I've been on five AEDs. In my experience things have gone much smoother if they can change only one thing at a time. Ramp up on one drug before ramping down on the other, for example. Or adding, removing, or increasing only one drug at a time. That way you can tell what drug caused what effect. It becomes very clear what is causing a problem, what is helping, and what isn't making any difference at all. I know the one-at-a-time method can't always be used, but I always use it when I can. You might want to mention this approach to the doctor and see what he has to say about it, and whether it is possible. Then you'll know better what's what.