Epilepsy Foundation

Greetings,

 

There is a change in medication plan for my daughter. All her sezuire episodes till date have been breakthru & we have ended up in ER & hospitals to control them. She was on Keppra.

 

Our Neuro has decided to take Aanu off from Keppra and start Depakote. I have been give schedule which we have to follow. Eventually wean off from Keppra.

 

I would appreicate if you can share your experience with switch of medication.

 

Also is there a taste to Depakote which you can make out from Kids reaction like he or she is not liking the taste ?

 

Thank You

 

Regards

 

Chirag

Views: 950

Replies to This Discussion

My dtr is on depakote.  It has worked well (although she needed additional of lamictal to the depakote to get her sz-free).  She was originally on the sprinkles - which she didn't like the taste.  I had to work to find things that helped mask the taste.  She's on depakote ER now - which is fine.  No taste.

She also had been originally started on keppra.  (I've now learned that keppra is not approved as single therapy for any seizure type - so it's not clear to me why the neuros start with this medicine first - probably heavy marketing.)  The first time we tried to wean off keppra - she had the worst string of seizures.  I don't believe there are any drug-drug interactions between keppra and depakote - so I would personally want to make sure the depakote is therapeutic before starting to wean keppra and then wean keppra SLOWLY (unless there are other bad side effects from the keppra).  I was kind of surprised by the seizures because the keppra wasn't really working.  I took her to get a second opinion who taught me that even if the keppra isn't working, in his experience, seizures can often occur during a keppra wean.  He advised going slowly.  The second time we tried weaning - we went slow, over a 14 week period.  She still had one sz when we dropped it from twice a day to once a day.  But, otherwise, tolerated it well.

good luck.  I know any med changes are very nerve-wracking

We've always struggled in a med change - multiple ER visits - except in this last med change. This last one was a struggle with excess fatigue/sleepy and a slow decrease in sz activity...not one ER visit...not one ambulance ride...happily uneventful and boring. I wish you the best in this change and that it is a positive result.

Thank you for your reply. I hope your daughter is doing well. I have to pick up prescription today and we have been given schedule for entire month like slowly starting Depakote & reducing Keppra dose slowly. I hope the transition goes smooth. I am very scared :( Regards.

Jennifer said:

My dtr is on depakote.  It has worked well (although she needed additional of lamictal to the depakote to get her sz-free).  She was originally on the sprinkles - which she didn't like the taste.  I had to work to find things that helped mask the taste.  She's on depakote ER now - which is fine.  No taste.

She also had been originally started on keppra.  (I've now learned that keppra is not approved as single therapy for any seizure type - so it's not clear to me why the neuros start with this medicine first - probably heavy marketing.)  The first time we tried to wean off keppra - she had the worst string of seizures.  I don't believe there are any drug-drug interactions between keppra and depakote - so I would personally want to make sure the depakote is therapeutic before starting to wean keppra and then wean keppra SLOWLY (unless there are other bad side effects from the keppra).  I was kind of surprised by the seizures because the keppra wasn't really working.  I took her to get a second opinion who taught me that even if the keppra isn't working, in his experience, seizures can often occur during a keppra wean.  He advised going slowly.  The second time we tried weaning - we went slow, over a 14 week period.  She still had one sz when we dropped it from twice a day to once a day.  But, otherwise, tolerated it well.

good luck.  I know any med changes are very nerve-wracking

Thanks - I hope too the transition goes smooth. Regards

Ericsmom said:

We've always struggled in a med change - multiple ER visits - except in this last med change. This last one was a struggle with excess fatigue/sleepy and a slow decrease in sz activity...not one ER visit...not one ambulance ride...happily uneventful and boring. I wish you the best in this change and that it is a positive result.

My daughter was initially put on Keppra in the hospital but later switched to Depakote.  We had a long schedule for the weaning off Keppra to Depakote, 3 or 4 weeks if I recall.  She has done very well on the Depakote and has been seizure free since 12/4/2010.  There are behavioral side effects but we've decided to live with that and hope that she makes 24 months seizure free, at which point we can try a full weaning off meds.  The weaning schedule doses were very complicated so I put it all on a spreadsheet, which helped alot.  I always had the spreadsheet to refer to so I knew she was getting the correct dose of the Keppra and Depakote during the weaning period.

I agree with Jennifer. I also wonder why my son was started on Keppra in the ER...it never controlled his multiple types of seizures and caused horrible side-effects.

Our neuro started him on Dekapote and rght away, the absence seizures were gone. It took a little longer to control the TC, and (due to side-effects) Dekapote couldn't control all of of his CP, but most. All and all, Dekapote is a thousound times better for us than Keppra. We also had a long wean from Keppra, and he was on both for about a year. Each time my son dropped down from Keppra, he would have a seizure. I must tell you when he was finally off Keppra, the "sparkle" in his eyes returned. It was so good to see that! Like Jennifer, my son also needed Lamictal to be controlled. He went from a seizure every week on Keppra to once every other month on Dekapote, and since weaning Keppra and adding Lamictal, only one seizure this school year!

Wean SLOW. Doesn't your neuro want your child to continue taking Keppra, add Dekapote at a certain level, then wean Keppra? What types of seizures does your child have? I know changing meds is scary, but we have to hope our children will be better in the end. Hang in there! I think you'll like Dekapote in the long run. Good Luck!

I think I spoke to a few of you before however, to refresh, my dtr is 17 yrs old,on Keppra XR 4500mg daily, she had a few breakthrough seizures in 2012. The dr tried adding lamictal, clonazapam  ( not sure of spelling) zonegran, all terrible side effects.  NOW wants to add depokote and wean off Zonegran.  She only wants her to start with a very small dose at night being that my dtr only gets them in her sleep. The idea is to lower the Keppra because her levels are too high and side effects are getting a bit much emotionally. So my question is at 17, is it smart to start depokote.  she has generalized seizures and i heard this was the best med for it however, the following side effects are freaking us out!!!!! (the weight gain, hair loss, behavioral issues, zoning out, becoming forgetfull, and most importantly affecting the female reproductive organs IE: birth defects, not being able to have kids, or oral contraceptives ineffective) It is concerning that she is almost an adult and to begin depokote at her age??? I am distraught over it, she is miserable and we haven't picked up the prescription.  I know every person's reaction are different but I saw first hand what it does to a woman.  I am so confused!!! Anyone have any advice? A 17 yr old on Keppra and Depokote???? So worried! Thanks for listening.

Chirag,

    How old is your daughter and how is she doing? What dose of Keppra is she on?  This is very scary i am picking up a script for depokote today. UGH!!!!

Chirag Lakhani said:

Thank you for your reply. I hope your daughter is doing well. I have to pick up prescription today and we have been given schedule for entire month like slowly starting Depakote & reducing Keppra dose slowly. I hope the transition goes smooth. I am very scared :( Regards.

Jennifer said:

My dtr is on depakote.  It has worked well (although she needed additional of lamictal to the depakote to get her sz-free).  She was originally on the sprinkles - which she didn't like the taste.  I had to work to find things that helped mask the taste.  She's on depakote ER now - which is fine.  No taste.

She also had been originally started on keppra.  (I've now learned that keppra is not approved as single therapy for any seizure type - so it's not clear to me why the neuros start with this medicine first - probably heavy marketing.)  The first time we tried to wean off keppra - she had the worst string of seizures.  I don't believe there are any drug-drug interactions between keppra and depakote - so I would personally want to make sure the depakote is therapeutic before starting to wean keppra and then wean keppra SLOWLY (unless there are other bad side effects from the keppra).  I was kind of surprised by the seizures because the keppra wasn't really working.  I took her to get a second opinion who taught me that even if the keppra isn't working, in his experience, seizures can often occur during a keppra wean.  He advised going slowly.  The second time we tried weaning - we went slow, over a 14 week period.  She still had one sz when we dropped it from twice a day to once a day.  But, otherwise, tolerated it well.

good luck.  I know any med changes are very nerve-wracking

Hello Maria,

 

My Daughter is 2 years old. She is on Keppra 3 ML twice a day.

 

Because of long weekend we did not get Depakene I will be getting it tommorow.

 

The schedule given by our Neuro is a long schedule & its like 4-5 weeks time frame. The logic is Slowly we have to start Depakene & wean off Keppra slowly.

 

I am scared too.

 

Prayers for everyone.

 

Regards

 

Chirag

Maria Porrazzo said:

Chirag,

    How old is your daughter and how is she doing? What dose of Keppra is she on?  This is very scary i am picking up a script for depokote today. UGH!!!!

Chirag Lakhani said:

Thank you for your reply. I hope your daughter is doing well. I have to pick up prescription today and we have been given schedule for entire month like slowly starting Depakote & reducing Keppra dose slowly. I hope the transition goes smooth. I am very scared :( Regards.

Jennifer said:

My dtr is on depakote.  It has worked well (although she needed additional of lamictal to the depakote to get her sz-free).  She was originally on the sprinkles - which she didn't like the taste.  I had to work to find things that helped mask the taste.  She's on depakote ER now - which is fine.  No taste.

She also had been originally started on keppra.  (I've now learned that keppra is not approved as single therapy for any seizure type - so it's not clear to me why the neuros start with this medicine first - probably heavy marketing.)  The first time we tried to wean off keppra - she had the worst string of seizures.  I don't believe there are any drug-drug interactions between keppra and depakote - so I would personally want to make sure the depakote is therapeutic before starting to wean keppra and then wean keppra SLOWLY (unless there are other bad side effects from the keppra).  I was kind of surprised by the seizures because the keppra wasn't really working.  I took her to get a second opinion who taught me that even if the keppra isn't working, in his experience, seizures can often occur during a keppra wean.  He advised going slowly.  The second time we tried weaning - we went slow, over a 14 week period.  She still had one sz when we dropped it from twice a day to once a day.  But, otherwise, tolerated it well.

good luck.  I know any med changes are very nerve-wracking

Hello,

Thank you for your reply.

Yes the plan is to wean slowly. its a 4-5 weeks schedule give by our Neuro. Because of long weekend we did not get our medication. I have to collect medication tommorow and start the scheduele.

 

Warm Regards

 

Chirag

A.C. said:

I agree with Jennifer. I also wonder why my son was started on Keppra in the ER...it never controlled his multiple types of seizures and caused horrible side-effects.

Our neuro started him on Dekapote and rght away, the absence seizures were gone. It took a little longer to control the TC, and (due to side-effects) Dekapote couldn't control all of of his CP, but most. All and all, Dekapote is a thousound times better for us than Keppra. We also had a long wean from Keppra, and he was on both for about a year. Each time my son dropped down from Keppra, he would have a seizure. I must tell you when he was finally off Keppra, the "sparkle" in his eyes returned. It was so good to see that! Like Jennifer, my son also needed Lamictal to be controlled. He went from a seizure every week on Keppra to once every other month on Dekapote, and since weaning Keppra and adding Lamictal, only one seizure this school year!

Wean SLOW. Doesn't your neuro want your child to continue taking Keppra, add Dekapote at a certain level, then wean Keppra? What types of seizures does your child have? I know changing meds is scary, but we have to hope our children will be better in the end. Hang in there! I think you'll like Dekapote in the long run. Good Luck!

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