Community Forum Archive

Zonegran for JME

Hello, I am a Mom who's 14 y.o. son has just been diagnosed with generalized seizure disorder, JME. This is totally out of the blue and we have no history of seizure disorder in our families. The neurologist we have seen has put him on Zonegran only. He has had 1 grand mal seizure so far. His first EEG was normal. Then he had a sleep deprived EEG which was positive. The M.D. put him on Zonegran. I looked it up and it says it is for adults and an adjunct therapy to other meds. This seems odd to me and I am wondering if anyone out there with teenagers have been put on Zonegran with success? I would appreciate any help as we are all very scared and the Travolta tragedy hit at the same time. Thank you. jaki

Comments

Re: Zonegran for JME

Submitted by bearmkt on Mon, 2009-01-19 - 19:07

Hi Jaki,

I'm sorry to hear that your son has JME, I do too.  I've had it since the age of 17 and I'm in my early 40s now.  The good news is that JME responds well to anticonvulsants and the seizures can be fully controlled, often with one drug.  Many other types of seizures are very difficult to control.  The not so good news is that JME doesn't go away and your son will likely be on anticonvulsants for life.  Unlike your son I was misdiagnosed by many different neurologist with a different seizure type and was only under marginal control.  It wasn't until I saw an epileptologist in my early 30s that I was correctly diagnosed with JME and put on the right medication. 

I take Lamictal twice a day and it works very well for me.   I've never been on Zonegran but it may be appropriate as long as it works for your son and he feels OK.  Your son's neurologist should be able to answer your questions.  My mother inlaw recently developed epilepsy after her stroke and is taking Lyrica, which is also typically an adjunct therapy but the Lyrica alone controls her seizures. 

My advice is to consult with an epileptolgist (a neurologist who specializes in treating epilepsy) ASAP to confirm the diagnosis and course of treatment.  Many major hospitals have epilepsy clinics with epileptologist on staff.  I'm in the San Francisco Bay Area and there are centers at UCSF as well Stanford.  Take care and feel free to write me anytime.

Mark

Hi Jaki,

I'm sorry to hear that your son has JME, I do too.  I've had it since the age of 17 and I'm in my early 40s now.  The good news is that JME responds well to anticonvulsants and the seizures can be fully controlled, often with one drug.  Many other types of seizures are very difficult to control.  The not so good news is that JME doesn't go away and your son will likely be on anticonvulsants for life.  Unlike your son I was misdiagnosed by many different neurologist with a different seizure type and was only under marginal control.  It wasn't until I saw an epileptologist in my early 30s that I was correctly diagnosed with JME and put on the right medication. 

I take Lamictal twice a day and it works very well for me.   I've never been on Zonegran but it may be appropriate as long as it works for your son and he feels OK.  Your son's neurologist should be able to answer your questions.  My mother inlaw recently developed epilepsy after her stroke and is taking Lyrica, which is also typically an adjunct therapy but the Lyrica alone controls her seizures. 

My advice is to consult with an epileptolgist (a neurologist who specializes in treating epilepsy) ASAP to confirm the diagnosis and course of treatment.  Many major hospitals have epilepsy clinics with epileptologist on staff.  I'm in the San Francisco Bay Area and there are centers at UCSF as well Stanford.  Take care and feel free to write me anytime.

Mark

Re: Zonegran for JME

Submitted by dainty on Mon, 2009-01-19 - 21:31

Im sorry to hear but JME one of the better issues to have. Both my kids have it and we have no E on either side that we know of.  Thats why its JME.. mostly in the mornings... usually does well on one med... sleep and diet helps.  My kids both on lamictal 150 2x a day.. my son since 2006 when he turned 15 and my daughter a few months.. as she turned 15.  My son does well with seizure control on lamictal but we are noticing a problem with his cognitive memeory. We arent sure if its the E, the meds, or whatever...We are working on it. He also  has mild OCD and sensory issues.  Good news : ) Hes very smart in his 2nd year of College and usualy does well.  My daughter new to this and has myoclonics plus the 1 grand mal so far.  The meds dont seem to stop the myoclonics and we shall see with the grand mals.  It is a scary time and it is a shock.  At puberty you think you have healthy kids and whammo... Hang in there and use this place for support.  It will help alot. 

PS>> I wouldnt recommend lamictal either as Im not sure Im going to keep my kids on it.  Their side effects have been memory loss at times, loss of appetite, cant sleep, OUTRAGOUS dreams. Were still tying to work it all out * We are just starting with our second Dr and have gone to a Specialist in JME and genetic E.

BE well

joan*

 

 

Son lamictal 19 Grand Mals Daughter lamictal 16 Juvenile myclonic Both had first issues at 15 Both JME - gotta love puberty : ) * Both dealing with it* Now finding all the lil nuances that go with it* Live, Laugh, Love

Im sorry to hear but JME one of the better issues to have. Both my kids have it and we have no E on either side that we know of.  Thats why its JME.. mostly in the mornings... usually does well on one med... sleep and diet helps.  My kids both on lamictal 150 2x a day.. my son since 2006 when he turned 15 and my daughter a few months.. as she turned 15.  My son does well with seizure control on lamictal but we are noticing a problem with his cognitive memeory. We arent sure if its the E, the meds, or whatever...We are working on it. He also  has mild OCD and sensory issues.  Good news : ) Hes very smart in his 2nd year of College and usualy does well.  My daughter new to this and has myoclonics plus the 1 grand mal so far.  The meds dont seem to stop the myoclonics and we shall see with the grand mals.  It is a scary time and it is a shock.  At puberty you think you have healthy kids and whammo... Hang in there and use this place for support.  It will help alot. 

PS>> I wouldnt recommend lamictal either as Im not sure Im going to keep my kids on it.  Their side effects have been memory loss at times, loss of appetite, cant sleep, OUTRAGOUS dreams. Were still tying to work it all out * We are just starting with our second Dr and have gone to a Specialist in JME and genetic E.

BE well

joan*

 

 

Son lamictal 19 Grand Mals Daughter lamictal 16 Juvenile myclonic Both had first issues at 15 Both JME - gotta love puberty : ) * Both dealing with it* Now finding all the lil nuances that go with it* Live, Laugh, Love

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