Medicine Suggestion for Children with Complex Partial Epilepsy!

Malinda - posted on 11/08/2012

My son is 9yrs old and he is on Depakote, seems to be doing good with this med. I hope that you find the meds that can help with your daughter. We have known that something was wrong with our son for a while but had to wait for the DR's to see him. We finally found out in June of this Year that he has Absence Seizures. Now, we are Homeschooling him and we aer still having alittle trouble. I hope that you find something soon that will help. The Dr's told us that finding the right med's is a try and see what works better.

Baraa - posted on 11/05/2012

You know this is the doctor who is decide ok dont do anything by your self

Jennifer - posted on 09/09/2010

My son has been on Zarontin for 5 yrs with no noticeable side effects~hooray! He had been on several different medications Topamax being 1 that caused him to stop sweating & it was pretty severe...he would turn fire engine red & never break a sweat, when playing his insides were overheating with no way to cool down. When he was on depakote he was dopey/sleepy/lazy all the time never wanted to do anything...we're the happiest with Zarontin but not all meds work the same on all children you have to find the 1 that will work best for her & unfortunately sometimes it takes several meds I think we did 7.
Good luck!

Linda - posted on 09/08/2010

It often takes many tries to find the right med or combo of meds. My daughter takes Lamicatal and Depakote, but a very small dose of Depakote. Her hair was also falling out but once we lowered the med, it stopped. Also, Lamictal and Depakote work synergistically, which is a good thing.

Colleen - posted on 09/02/2010

lamitical? zongeran? We are on trileptal depakote sprinkles and weaning phenobarbital. We were going to try lamitical but you need to go slow we were having clusters so we added depakote and weaned keppra. Good luck. My daughter is loosing some her we started using special shampoo and vitamins. We are 12 weeks seizure free that is the longest ever. My daughter is 5 years old. how old is your child?

Jami - posted on 09/02/2010

We had to use the Keppra and the Valproic Acid together before they stopped my son's seizures. Each child is different though. It took us trying MANY different combos before we figured it out.

Gwen - posted on 08/31/2010

have u considered epilepsy surgery?

REBECCA - posted on 08/31/2010

My son did well on a combination of Lamictal and Depakote. We had to adjust the dosages several times, but eventually got his seizures controlled. He is doing very well now.

Vanessa - posted on 08/31/2010

I think every child will be different. My son has had seizures since he was a newborn. They have ranged from having them every hour for the first year of his life to a couple times a month. He has now been seizure free for 14 months. He is on Trileptal and Depakote Time release. While on just Trileptal his seizures were minimized to just the couple time a month, drastic improvement and after 12 years we sort of just accepted he would always have seizures. We moved and his new neurologist told us there was hope. We started Depakote and that was his saving grace. We are currently weening him off the Trileptal. All I can say is don't give up. There are many different drugs, combination of drugs and dosages. Good Luck!

Samantha - posted on 08/28/2010

Hi Kaydee, My daughter has Complex Partial Seizures that always generalise to Tonic/Clonic.She has been on Epilim/Depakote for over 5 yrs, we are weaning her off due to side effects (brain shrinkage)The Epilim worked well for 18 months no seizures, then some breakthrus so we tried Tegretal on top (made her sz worse) we added Topamax (works well) After more szs tried Keppra on top (didnt make much difference) also tried Zonisamide on top (caused rash) Then started Lamictal and Frisium. We are still in the process of weaning Epilim and increasing Lamictal so we are still seeing some breakthrus, but hopefully in a month we will be all sorted! So combinations can work well, we will be on Topamax, Frisium, and Lamictal, fingers crossed this will be the magic combination!

Linda - posted on 08/27/2010

My grandson is 25 and has had partial complex seizures all his life. When he was young they were well controlled by tegretol. When he reached his teens we switched to Zorontan, one I haven't heard mentioned much in this conversation. He has been very well controlled for the past 7 or 8 years. A couple of times doctors have tried to take him off Zorontan and put him on Lomictal because it was a newer med suppposedly better for controlling his type of seizures and every time, we had to go back to the Zorontan because it worked much better. We do have to make sure he eats at regular intervals and doesn't get too overheated when doing sports, but other than that he has been very well.

Julie - posted on 08/27/2010

My son was branded with uncontrollable seizures at one stage and was put in the care of the highest neurologist at the childrens' hospital here. I haven't heard of many of the drugs described above but I do know that Australia deems many of the drugs available in America as unsafe. After much perserverence though it seems that Tyler has grown out of his epilepsy so don't give up hope. He had grand mal seizures during the night, I never really knew if he would be alive each morning and absent seizures during the day where he would wander. The school had to build a fence all around the school to stop him from wandering onto the road at recess.
Epilum made him extremely aggressive and hypo'. Thankfully the doctor warned me that this may happen so I changed that one pretty quickly. For some years he has been on a mixture of Tegratol, Lamictal and Topomax. He will turn 13 next February and as he has been cut back to only topomax now he will probably be off of his meds by his birthday. Topomax is also used for migraine prevention. I use it for this and I have gone from morphine injections three times a week to one migraine in a fortnight and NO morphine!!! Woohoo!! Lamictal, you may also be interested to know is also used as a mood stabiliser. I have Bi-polar and it has also been used for me in the past to control my mental illness.
My best advice to you is to trust your instinct. If your gut tells you it's not working then it's probably not, give it a fair go and then try something else.
Good luck x

Jennifer - posted on 08/27/2010

My son is almost 3 and after SEVERAL different medication the only drug that helps with CP seizures is Topamax.

Christine - posted on 08/27/2010

I have a 14 and 15 year old son and daughter with this condition....valproic acid was nasty for my daughter, her hair fell out as well and she gained 20 lbs in a month....keppra was a difficult one for my son....both are now on topomax with amazing results and no ....i mean no side effects.....just a suggestion

Linda - posted on 08/26/2010

My daughter is on Lamictal and Depakote. They work synergistically so you need sometimes less of each because they work so well together. Her hair was falling out on the Depakote and we were able to lower the dose by 50% and that stopped the hair falling out and she has remained seizure free for 2 years. She takes the Depakote sprinkles, and not generic. Every child is different though and I know it is all about finding the right combination for each individual. I wish you the best of luck - I know how tough it can be.

Pennie - posted on 08/26/2010

Biofeedback and non-invasive healing art therapies can be very helpful in reducing seizures, based on research and experience I've observed since the mid-1970s. Pennie healthierhappierlife.com

Melissa - posted on 08/26/2010

Tegretol has worked great also I used Keppra and it works fine too.

Jen - posted on 08/25/2010

Has anyone suggested the Ketogenic Diet? You'll need to find a hospital that can handle this. We went to Johns Hopkins but there are others.

Becky - posted on 08/25/2010

My son takes Depakote but has had no real hair loss trouble. His is dizzyness, or lightheadedness. Maybe you should get a second oppinion from a different neurologist. Good luck to you.

Tessa - posted on 08/25/2010

Hi Kaydee,
We tried numerous medications for my son with no sucess. We were at out wits end because he was either allergic to them, or he had horrible side effects!! And I mean horrible!! We ended up researching a few Alternative Therapy for Seizure control and today his is very well controlled and has no side effects!! I have a conversation titled "Have you ever tried Alternative Therapies for Controlling Seizures?" I explain more about what we did for Aidan and how it changed his life. It really made a big difference! If you are interested check out the conversation.

Eileen - posted on 08/25/2010

We had the same problems with my son and his particial complex seizures. He is also allergic to Ativan so just about every seizure meant a trip to the hospital. We finally decided to remove the nearly half of brain that was causing the seizures and he has been seizure free for 7 years. This is not typical but we finally got lucky. He is really thriving and we have been able to take him off all seizure meds. I wish you the best and my heart goes out to you, I know how scary this is for you and your family.

Josie - posted on 08/24/2010

Has she tried Lamictal (generic is Lamotrigine). My daughter has been on it for years (since she was seven) and it really helps keep her seizures under control. She is 15 now, and with the onset of puberty, she has had about one seizure a year. We hope that the seizures will stop again once she gets through the teen years. However, she will probably need seizure meds all her life.

Jenny - posted on 08/24/2010

Our son has been on Epilim for 6 years & it has controlled his seizures.

Kathleen - posted on 08/24/2010

Has she used Lamictal?

Shalah - posted on 08/23/2010

I am surprised at how few people here have heard of or are using tegratol. My daughter is seizure-free since '06. She was on generic tegatol from 2001, and it did not control the seizures until '06 because she processed it too fast and needed the name brand time release. She was taken off of meds in 2008 after being seizure free for 2 years, and has had normal eeg's since, so she's off for good. I was under the impression that tegratol was the safest and most prescribed medication for child-onset epilepsy because it is the most effective while having the least side effects. I would discuss this with your doctor if he hasn't already tried this for her. The worst side effect was her being a little absent-minded and tired. And she couldn't eat grapefruit, which really upset her!

Brandy - posted on 08/23/2010

my son has been on all of these drugs you have named,there where unsuccessful for him to.I am very sorry your family is having such difficulty.I will be praying for you.If I hear of anything different you will be the first to know.Keep in mind you are not alone in this struggle.God bless.

Renee - posted on 08/23/2010

Has she tried Tegretol?Depakote isn't good for girls t causes polycystic ovarian syndrome which is painful and causes infertility,prediabetes and lots of other issues

Gwennea - posted on 08/22/2010

My daughter has complex partial seizures and she takes: trileptal, lamictal, clonazepam, vimpat, and concerta. She recently stopped taking neurontin. I don't know what will work because thses meds don't control my daughter's seizures. She had surgery in 2008 and se is still uncontrolled (abt 3-4 episodes daily)

Andrea - posted on 08/22/2010

how about taking her off and work on eliminating her triggers? do you know what they are? meds did NOT work for us here, either..... IV IG has been helpful for us and addressig underlying medical conditions such as immune defficiency. My son is also dg with autism... let me know if you want to learn more.

Deana - posted on 08/22/2010

My 8yr old daughter's Absence seizures have stopped while they found just the right dose of Depakote sprinkle capsules AND Zarontin. You may want to try name brand versus generic, it's made a difference for us!

Rebekah - posted on 08/22/2010

My son is 10 and has been on several different medications for his complex partial seizures. He is currently taking keppra and lamictal. He was still having 1 to 2 seizures a week but about 3 weeks ago he had brain surgery where the surgeon removed about 10% of his right temporal lobe, which is where his seizures were coming from. So far he has not had one seizure, he is still taking his meds but hopefully within a year he will be able to be taken off his meds for good.

Jennifer - posted on 08/22/2010

My daughter has the smae issues and has tried all of those also with no success. now she is on Lamictal, carbemazepine and Clonidine. She does have some breakthrough seizures usually every two weeks. I know how you feel about side effects. My daughter who is also Kady is very aggressive and I am at ,my wits end.

Grace - posted on 08/22/2010

My son has epilepsy he is currently on lamotrigine(Lamitcal), topirmate (topamax) and levetiracetam (keppra). My son has grand mal seizures I have found that since he has added the topiramate he has gotten much better. He was on Trileptal for a while because he is also a bipolar manic depressant it made him gain weight and so did the deprakote . Both of those medicines seemed to work for a while and then they stopped. The medicaine that my son has been on have helped him alot he was aving three seizures a day at one point he hasn't had a major seizure in about eight months since the topiramate was added and the lamitical worked good by itself for a while. I don't know if this helps at all.

Shalah - posted on 08/21/2010

My daughter had complete remission of seizures on Tegretol time-release. I don't know if that is the same as anything she's already tried, but it is the most common prescription for children. Good luck.

Colleen - posted on 08/21/2010

Some meds work for some kids and not for others so its hard to say. My son who is 11 has had complex partial seizures since the age of 3 and the one med that worked for the longest period of time was tegretol. and after a few years of controlling the seizures that failed. he is on depakote now, but we are thinking about trying a new med, since depakote has really made him gain alot of weight, which they told us alot of people on this med do gain weight. we go through mayo clinic in rochester. the dr. says the next med that we can try is called oxcarbazepine. Hang in there, I know its very frustrating going through so many medications.

Sue - posted on 08/21/2010

My daughter has been in Trileptal for years and it has worked the best for her. She still has seizures but usually only when we have a change in routine. She had a hard time finding a medication that worked. My daughter sceams and stomps when she is having a small seizure but the big ones can really cause problems in public. She becomes unable to stand and is screaming and shouting and one side of her face seizes. Then we have groups of strangers walking up asking why we are not calling for help. It is extremely frustrating to me to deal with the public. When you tell them it is a seizure they look as though you have lost you mind because they are not bouncing on the floor. It is extremely frustrating and hard to keep my composure some times. Good luck in your medication endeavor.

Rebecca - posted on 08/21/2010

My 10 year old has been on medication for complex partial seizures since he was 3. We started with Topamax but they caused him to seize about 30 minutes after he took his medicine. We have been on about 10 different medications in 7 years and we currently are taking Lamictal. It is working okay, meaning he still has a few seizures a month. Before the Lamictal he was taking Carbatrol. I hope you can find the medicine that is right for your baby girl.

Marnie - posted on 08/21/2010

We are currently on Depakote, Zonegran, and Clonazepam. We tried Keppra and Trileptal, as well, with no success. We recently added the Clonazapam with great success. Be careful with Lamictal (can cause a deadly rash when you introduce new soap or lotion products to the skin while on it). We have avoided it so far. Has the doctor tried a mixture of the meds? It may help. Solo medications have not controlled my daughter's seizures either. We have been on a 3 year roller coaster trying to find the right combination. Good Luck with the new meds.

Stephanie - posted on 08/21/2010

My son is on topamax which seems to be working pretty well. It also has the side effect of not allowing him to sweat, in fact many of the antiepileptics do. If you watch them closely though it can be managed well! We went through most of those meds too, dilantin is one that works well too be has to be monitored with blood levels and has some nasty side effects itself.

Penelope - posted on 08/21/2010

my suggestion is either topamax or lamictal . my son has been on both with minimal side effects and good seizure control.

Angela - posted on 08/18/2010

My son tried five anti seizure meds before we found one that worked, he's been on Zonegran (Zonisamide) for 8 years now and it's worked great for him, with little side effects...the one side effect he has is hypohydrosis (doesn't sweat on full dose of meds), which has to be watched, but it's definately better then the side effects he had on the other drugs. I've read many success stories with kids who have different siezures, including complex partial. My son is 10 now and doing great!