Changing from tegretol to lamotrigrine

[Dijon's mum]

Hi just wondering what other people's experiences with changing meds is. My 13yr old daughter has been on tegretol since 6yrs old was havin grand mal seizure prob once a year but would have mini episodes, which has recently been named comPlex partial seizures this yr (was told was a tic disorder) frequently. This year the seizures have increase in severity and frequency ( I found her out cold on the bottom of the shower & she was blue) anyway long story short I pushed to see a neurologist who finally gave us a proper diagnosis & suggested that as she was taking the max dose of tegretol with now little control due probably to puberty etc to start introducing lamotrigrine. Now this is a 19 week process where we are slowly tapering down the teg while getting her body slowly used to the lam and also trying to reduce possible side effects. We are now up to wk14 taking the max dose of lam 100mg twice a day + 200mg teg in morn & 400 at night. My issue is she has had 3 seizures 2 at school within the past 2 months & we are supposed to drop the teg all together so will only be takin 100 lam, I can't see how this us going to get better. My girl gets really upset having seizures at school & feels really embarrassed. I don't know if we should just expect this through the transitional period or it's a sign of the pills not working??

 

[epileric]

I've been on Tegretol since I was 15 or 16 (maybe younger) and I'm now 51. I've also been on the maximum dose for over 20 years.

My seizures are still very frequent (almost daily) but they're just complex or simple partial seizures. If I go without the tegretol they are full tonic/clonic seizures.

Everyone reacts differently to medications so I don't think anyone can say if what's happening is because of the transition or not. My advice (as someone that doesn't have to go through all that stress/embarrassment) is to at least go through the transition & see if it works. It's really the only way to find out.

Please, keep us informed as to what is happening & how you are all doing.

Also, I moved your post to the Kitchen from the foyer of this site. Everyone always gathers in the kitchen at a party.

 

[Endless]

Hi, Mum,

I like to think of neurologists as cooks. They make the stew, adjusting this ingredient and that one, until it is just right. It's a science and an art. Sometimes the medication dosage has to get over a certain threashold before it controls the seizures. Mine are controlled on 350mg of Lamictal. They are not on 325mg. And when you change a dosage it takes a few days to reach the new blood level. How long has she been at 100mg?

If it were me, I'd call her neurologist and go back in. Her dosages may need to be tweaked, or meds changed to something else.

 

[Dijon's mum]

Hi endless, have slowly increased to 100 twice a day staring with 25mg she been on the 100 for about 6 weeks now but with the tegretol as well which now we r droppin off. I'm going to give the dr another email tomorrow.