How do you know if meds are working?

[Phil]

My daughter, 15 years, has recently, in the last 2 weeks, gotten up to full dose on keppra and has been on Lamictal since August. She has absences and has had 3 tcs since last June. Her last TC was in Feb and the docs started her on Keppra in addition to the L at that time. Her titration up on Keppra was rough but now that she is on it and its a stable dose every day and she's fully recovered from the last tc (which took her a few weeks) she seems to be a little less irritable and her motor skills are comming back. Also, it may be my wishful thinking but I think the absences seem less apparent than when she was on the Lamictal alone. But, how do we really know?

She is, of course, set to go into the hospital next week during her spring break for an eeg and I guess that is the real proof but do I tell the doc that I think the K is helping?

What do we do with the Lamictal that clearly has not worked (and in fact, we think it make her worse and light sensitive). Anyone have any views on the keppra question or the Lamictal experience?

What do you all think we should expect to happen next week? My guess is they are still going to find she is having at least some absences. What do you all think they will then recommend?

Sorry for the babbling but thoughts are really welcome.

 

[RobinN]

I think I answered this question in your other post.

How do I know if the meds are working?

They way I did it was by keeping very careful notes, of seizure activity on a calendar. I saw over time that the seizures increased. I also saw that nutritional choices were also causing seizures. There was also an increase in the time of month. f

None of this was ever picked up my the medical staff, it was all due to suggestions on sites such as this. Now we have a new lead that my daughters are due to a blood sugar imbalance.

 

[nana1]

hello
ok. I am on Keppra 1000mg twice a day, Lamictal 200mg twice a day,

and Zonegran 100mg three times a day. My last seizure ( which was March

20th) they upped my zonegran to the 3 times a day. I have been on so

many drugs in the past years. I had had this for over 50 years. They can not

get mine under control. I have no idea when they are coming on either, i do

know i have had one after the fact. I have had only 2 veeg`s in the hospital.

Course ton`s of eeg`s and mri. My eegs always come back abnormal, guess

that means i am abnormal person.......

I am also very sensitive to light. On my screen on my coumputer is a green glare screen, this helps the photo sensitive.

 

[Meetz1064]

Well, for

starters, you'll know that the meds are working because the number of seizures has lessened, obviously, and hopefully the ones that you do see are not as severe, either.

Some patients will notice that their memory has improved, or that their reactions to specific things (light or sound) may be better.

For some, it does take a long time to recover from a t/c, I am one of those. I tend to break bones during mine, and chew all the way through my tongue as well. My memory afterwards, especially immediately afterwards (even a week later) is a joke.

I was on Lamictal for 7 years+. I don't remember being light sensitive from it--I would have to ask around, and see if that was the case. For me, it did do a good job for quite a while.....

Take care, and good luck,

Meetz
:rock:

 

[Heather]

The way I can tell if a med is working, is if the gap between seizures is less. Also when my seizures started getting better, my recover time was shorter and I didn't feel as drained of energy. My current neuro had me keep a calendar. In the corner, I'd put what meds and dosages I took daily. Then when I had a TC or CP, I'd mark it on the calendar and try to give a short description (if I could). Since I have SPs daily, I write down approx how many SPs I have daily. My seizures for the last few years haven't changed. I have approx 1-4 SPs daily and they're usually very mild and short. My CPs and TCs are now controlled.

I don't recommend missing a dose of medicine. But when I do miss a dose, my seizure control is worse. That's also how I know a med is working. If you can't tell the difference in the seizure control, whether you take the med or not, then it's not working.

I used to take lamictal alone. It was helping, but it wasn't enough. My seizure control was getting worse, even when I took all my medicine. But when I missed a dose my seizure control would get even worse. So it was helping, but I needed something else to go along with it.

I now take keppra 3000mg daily and lamictal 400mg daily. I used to take 600mg of zonegran, but I couldn't tell any difference in my seizure control whether I took it or not. Keppra has controlled my seizures better than any AED I've ever taken. So when my seizure control started getting alot better, I weaned off of zonegran.

If you feel like the lamictal isn't working, have the neuro decrease the dosage and see if her seizure control gets worse. If it does get worse, lamictal is helping and you prob need to add another med.

Being a guinea pig isn't fun. I had to do that when I started seeing my current neuro because my last neuro had my meds all messed up. But it was worth it. I was able to tell what worked, what didn't and whether I needed to add another med.

I know keppra isn't the wonder drug for everyone. But keppra has helped control my seizures better than any med I've ever taken. After 6 yrs, my seizure control is still getting better.

Hope this makes sense.

Good luck,
Heather