My daughter's ped wants to switch her from Topamax to Keppra. She's thin as a rail, and he thinks it might be from the Topamax. I've heard some things about Keppra that scare me, like mood swings and outbursts of anger.
Has anybody made this switch? What was it like for your child?
Keppra
I've been looking on a bunch of different forums and I keep seeing things about Keppra that scare me, like people saying that their drowsiness is much worse or their child has incredible outbursts of anger. There are side effects with any med, but can you do anything about her diet to increase her weight so that she doesn't have to make the switch? Does your doctor have much experience with Keppra?
Tapering on and off
In my experience, when Sarah's ped switched her meds, he did it really gradually, tapering down the old one and tapering up the new one. So the gradual process made it somewhat easier. Still, when she started on the Topamax, she was REALLY sleepy and it persisted until she was at the target dose for a good three weeks.
How's it going? Are you making the switch?
Switching Medications
I am sorry to hear they want to switch medications. Have they said why?
I am trying to recall where I saw the statistic, but I am pretty sure it was in the video from the Charlie Foundation where they indicated that it the first drug doesn't work, there's only a 15% chance that the 2nd one will. Even less with the 3rd, 4th, etc.
The honest doctors will tell you that they don't actually know much about epilepsy and using the drugs is simply a guessing game of trial and mostly error.
We tried 6 different medications along the way with Adam and none of them worked for him. If I had to do it again, I would have stopped after a maximum of two.
Have you tried or considered the ketogenic diet or neurotherapy? These are the two treatments that worked wonders for my son Adam.
Jenni posted a link to a article that was written about the diet on the front page of the health section of the New York Times.
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
I'm putting my foot down about switching meds
Thanks, Arlene, for the statistics. You know, I always felt like her doctor was just kind of guessing about what to do with her. I'm not going to go for the switch. I've started giving her some high-calorie supplements (Ensure) and I'm just going to work really hard to put more weight on her bones.
With her weight as low as it is, I'm scared to start her on the ketogenic diet, though. And what do I do about starting school in the fall? How do you keep your kid from eating things she shouldn't when you're not around to supervise?
Topamax to Keppra
Our daughter was on Topamax for a few months and it was horrendous for her - up all night and no control of the epilepsy (complex partial seizures, frontal lobe). She then moved onto Keppra, which has been better for her in terms of control, but she certainly has major outbursts, although i'm not sure we can pin it all on the Keppra. Changing between drugs was the usual thing of slowly dropping the one and introducing the other.
Ketogenic diet
Andrew --
Thanks for your response. How long has your daughter been on the KD? Is she still on meds? How long did it take before you saw an improvement in her seizures? How difficult is it to do the diet?
How old is your daughter and what kind of seizure disorder does she have?
I realize that's a whole lot of questions, but I would really love to know your experience as I'm trying to decide whether to just do the KD or continue to mess around with meds.
Hi there, My daughter is
Hi there,
My daughter is on the Keto Diet and if I had it to do all again I would have just put her on the diet in the very first place and not tried any of the drugs. The drugs have each done so much damage to my little Ashley and the diet has been the one thing that there has been a large improvement for her with. We are still trying to get her off of drugs but are having a hard time as we are having other health issues along with bigger seizures so I am very scared. Everytime we drop a quarter of Clonazepam we go through a horrible number of weeks with withdrawl seizures. We are still working at getting drug free and slowly but surely we will get there I hope then we will see what the diet can really do! I am all for the diet though, I wish I did it first!!!
Cindy
Getting off meds
Hi Cindy --
I was just browsing the forum and saw your post. How are you doing at weaning her off the Clonazepam?