Partial Complex Epilepsy and Trileptal..

Kaydee - posted on 02/14/2010 ( 24 moms have responded )

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Our 3 year old Daughter after 2 1/2 years of battling her seizures has officially been diagnosed with Partial Complex Epilepsy. She mostly suffers from Starring Spell seizures with occasional Temperature Induced Grand Mal Seizures from Spike in Body Temperature. We are having a really hard time finding the trigger with the Partial Complex seizures which is so very difficult. Seems since we started medicine her seizures have increased which is so frustrating. We have switched her from Keppra to Trileptal and I was wondering if anyone has used Trileptal before and what was the outcome. We are doing a Hospitalized Epileptic Study on her in March and praying we get some answers.

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Ann - posted on 06/26/2013

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My 8 year old son has been diagnosed with seizures. Well the neurologists seem to be in debate as to the type of seizure he is having ; calling it Rolandic seizures or complex partial seizures. I am confused on how two different neurologist can have such different opinion's ? Does anyone have any suggestions because I am confused?

Leigh - posted on 02/24/2010

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Hi! I have had Epilepsy since I was 12yrs old and I am now 40. Most of my seizures have been Partial Complex, caused by a certain time of the mnth and personl stress. I have had 1 brain surgury and have been tested twice to see if I am a canidite for another.I have tried all kinds of medicine, including Trileptol. I am currently on Trileptal, tpomamax, and Keppra and have never felt better. You are so smart to do the Epileptic Study, teach your daughter to be brave and not ashamed of her disability. Too many people shy away from opportunity in regards to medical opportunity, and this is coming from somone with the disability.

Aileen - posted on 02/22/2010

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my son is now 12 and he too has partial complex epilepsy. triggers included some video clips and in his case some electronic games. as for the tempurature induced grand mal the triggers were usually any virus, at the first sign of any illness i gave him panadol for kids. it didnt stop them all but it reduced the frequency of them. sunlight through trees when driving can do it too. i hope this helps

Judy - posted on 03/19/2011

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Good afternoon. I'm new to the community. I have a 3 1/2 yr old daughter who has been having seizures since she was 1 yr. We have been on Keppra and the doctor just started her on Trileptal. She she has started that she has been having many blackout sessions. The majority of her seizures are normally febrile related. Please help

Cee - posted on 02/24/2010

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Trileptal didn't help my daughter much and she was on it for about a year. Don't give up on the meds. Unfortunately there is a fine tipping point with dosage and a medicine that was working can cause more seizures if increased too much. There are so many meds and so many combos that it can take a while to find what works for you. My daughter Aislinn has had seizures since 3 months old (she is five years now). We have been on almost every med and combos of many. Finally we are getting somewhere. She is on vigabatrin, depakote, AND the ketogenic diet. She was having 4-6 seizures a day and we are down to about 7 a week. For us that is a miracle. Don't give up. I am in a family epilepsy support group and between us every pill and procedure has been done. For some kids it only takes one or two med tries before you find the right thing. For others it takes a lot longer and surgical intervention. Aislinn also has a VNS which didn't really work at first but strangely a year after it was put in it started helping. I live by the motto "count your blessings not your problems." It helps to put things in perspective and keep me sane while having a special needs kid.

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Sharron - posted on 09/06/2012

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I've been having fits since 13 now 43. I'm now 15 yrs fit free......

On a concoction of valpro, tegretol. Topamax .. but I'm driving doing all the things. U should be doing.

But as a child I went through 30 -40 seizures s day.

Email if u want sharronblakey@hotmail.com

Kellie - posted on 06/01/2012

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My son is 9 and started having seizures at age 8. He has only had 3 that we know of and they have been in his sleep. The ones he had were more like grand mal seizures. His EEG was abnormal showing focal spikes only during drowsiness and sleep so therefore the Dr. diagnosed him with focal epilepsy and placed him on Trileptal. I am hoping the Trileptal is the right medicine.

Amy - posted on 03/21/2011

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After reading all of the responses about Trilepatl I spoke to me sons dr asking if it might be a better choice since the side effects with Lamictal can be very serious. I am so glad I read you post about Trilepatl and thinking we will try it.

Amy - posted on 03/19/2011

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My son was also diagnosed with complex partial seizures. His dr started him on Keppra but now wants to change to lamictal. This is all new to me, he just started having seizures six months ago. His EEG was fine but from the video it was obvious he was having seizures. His are mainly staring and his arm jerking for a few seconds multiple times a day. His dr said it does not always show up on an EEG even if they have one at the time. A bit confused and nervous about all these different drugs and side effects. Afraid to start him on the new med. All other development is normal, just starring spells and jerking.
Help!

Judy - posted on 03/19/2011

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Good afternoon. I'm new to the community. I have a 3 1/2 yr old daughter who has been having seizures since she was 1 yr. We have been on Keppra and the doctor just started her on Trileptal. She she has started that she has been having many blackout sessions. The majority of her seizures are normally febrile related. Please help

Diana - posted on 02/23/2010

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16 Yr old son has been on trileptal for going on 5 Years. After 7 meds. I started with the seizures with from 18 month old. At the age of three we were told he had seizures only in the left Temporal lobe and the Occipital lobe.(Now all over) By the time he was seven I was told brain surgery( Slice and remove) could fix it. I slept on it and asked for more options. They added Gabatril. On 7-2000 my son had a V.N.S. implant(www.cyberonics.com) . No more grand mals, Partial Complex, Simple Complex and no more hand shaking. I only have to be careful during upgrades every 4 to 5 years he will have a Grad Mal. I can handle that. Good luck I have done so much traveling to get it taken care of it for him. I live in Redding, Ca, I had to travel to Medford, Or every month to a special doctor (Michael Narus of 13 yrs). Now that funding(Far Northern) has been cut off by the Governor of California. Sacramento, Ca to sutter Medical Group to see Doctor Eddie Zusman (Neuro Surgeon) Ever 3 to 4 years. This month we got a new doctor in Sac at Sutter Medical Group. Dr. Chez I hope he is as good as our last doctor. I got CCS( California Children Services) to pay for this until he is 21.I have had to be my sons advocate to get the thing he needs. Good luck everybody with these very special kids. They need lots of love and understanding. Moms and Dads stay Strong it will get better after you find the grove that works.

Celeste - posted on 02/23/2010

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My 8 yr old Corban, has had siezures since birth. He had been on many meds alone and in combo the first few years but with side effects and no resolve we have chosen to keep him of of meds as much as possible. Currently taking Zonisamide. Have used Keppra, Trileptal, bout 75 to 80 % of the list you find in the office. We encountered lack of appetite, bad mood swings. not being able to walk well, so many side affects. We have a VNS implant for him and he is currently on an MCT oil Ketogenic diet. In combo they all give some relief but even in combo we dont have control. I am a big advocate of alternative possibilities and very anti narcotic. You are the biggest advocate for your child AND know her better then the Dr. You do have very important input to her health and well being so dont be afraid to question and investigate all there is we can do for our kids. We are having to invest some time this year in the possibility of brain surgery and every step can be scarey but we can stay well educated too. Trust yourself. And God. We can chat anytime if you like.

Karla - posted on 02/23/2010

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My son Jeffery is 12 and started have seizures a little over a year ago. He had 4 before they found a med that worked, Trileptal. He has been seizure free for over a year now. I think the first and only med he was on before Trileptal was Valproic Acid, off brand of Depokene. It didn't work alone, so now he is on both of them. He has what is called Lowes Syndrome, so seizures are a part of the syndrome. I feel the Trileptal is great.
Thankful for no more seizures. Hope this helps. Karla

Dawn - posted on 02/23/2010

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My 4 year old son was just complex partial seizures as well. He had his first seizure Jan. 2nd. He was on Trileptal but he broke out in a rash from it so we had to switch him
to Topamax. He hates this one because it is pills he needs to swallow. We tried mixing them in yogurt but that did not work either. Good luck with the Trileptal. I hope it works out. I wish my son could have stayed on that one.

Melissa - posted on 02/22/2010

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My son has been on Trileptal since he was two months old. Matthew is now four and he started having increased seizures now to hold him he is on Trileptal and Keppra.

Elena - posted on 02/22/2010

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My son started having seizures when he was 15 months old and was put on trileptal he is now going to be 7. he has had no side effects at all. the meds have worked very well for him. We weaned him off last summer, crossing our fingers he wil be ok. i too hope the medication works for your daughter.

Amy - posted on 02/21/2010

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My son has been on trileptal since he was nine, he is now seventeen. So, far I have been pleased with how it helped

Roxie - posted on 02/20/2010

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Hi everyone, my son has been having seizures since birth and he is now 5 years old and sometimes still has them. He takes Trileptal, Topamax, and Keppra for his seizures. When he seizes he he wld sometimes stare and he wld twitch his head, mouth, arms and legs. I have Diastat here at home to give him but sometimes it doesnt work. They have found that his seizures starts on the left side. The drs were thinking that his seizures came from the many episodes of pneumonia that he had. He had salivary gland surgery in Nov 09 and it has helped to cut down on the pneumonia and the seizures. Since his surger he has had 2 mini seizures that lasted for only 2 minutes.

Tracy - posted on 02/20/2010

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I have a 11 year old son that we started on Trileptal over 2 years ago, we have battled 10 years of seizures and In the fall of 2008 we went through a long 3 months of multiple seizures. We went to Spokane's Childrens Hospital with the help on my husbands Aunt, We went through a long week of testing again and finally he had a seizure while hooked up to the EEG they were able to locate where the seizures were stemming from and get him on the right medication, We first tried Keppra and after 2 weeks of seizures on the med they changed him to Trileptal which has worked miracuosly. He in the past has had all sorts of testing such as CT scans, MRI's EEG's and 3 different doctors. When we went to the childrens hospital they told us that we have tofind out what part of the brain the seizures are stemming from before the RIGHT medication will work. He was diagnosed with Right Frontal Lobe Nocturnal Seizures which means that he has them mostly when he is sleeping or very exhausted and they occur in the right frontal lobe of the brain.

Kathi - posted on 02/18/2010

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My son is 10 years old and has had seizures since he was 5. Trileptal was the first med they put him on, and he has done very well on it. He has had some partial complex, and abscence(staring spell) seizures. Usually as he has gained weight with age. His neurologist just increases his dose each time, and that has kept them controlled. He had the partial complex and absence seizures since he was 3, but his doctor at that time told us it was just his Autism. The best way to feel comfortable is to be comfortable with you neurologist. I shopped around for a pediatrician and a neurologist, and a developmental pediatrician. I'm not sure where you live, I live in Ohio, but we go to Pittsburgh, PA for neuro and developmental pediatrician.

Michelle - posted on 02/18/2010

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hi Kaydee Howard,my name is Michelle motsinger and I live in Springfield Oregon. I have a six year old daughter that i told you about on my last message.She has the same thing youyr daughter has.The douctor can not find any trigger to the seizures.she has had cat scans done,she has hsd eegs done on her brain and the doctor has said everything looks fine.We tried Keppra and it did not help her enough and she still had alot of seizures and was to tired on it.She had behavior problems while she was on keppra.So me and her dad switched her to trileptal and it has helped her so much,she is not as tired as she used to be,she has had 2 seizures last year and one this year.She now only has the starring spells most of the time.well please tell me how the study goes,because we are looking for a trigger to her seizures.it is nice to know there is other moms out that have kids with the same problems.So please email me and lets talk.It is hard to see her goe through one of her seizures,I have a 4 year old and a 2year old and they do have this problem.It is hard to have them see her have a seizures,we just tell them that she will be ok and have them leave the room untill she is out of it.So if anyone else asks about trileptal tell them it is the med that will work and it is great. I recommened it to anyone.well thanks.

Colleen - posted on 02/18/2010

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Hi, My son also has partial complex epilepsy.We just weaned my son off Keppra, that medication was actually making him have more seizures. He is now on depakote so I am hoping this med will work for him. Good luck, I hope that Trileptal will be a good med for your daughter!

Michelle - posted on 02/17/2010

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I have a six year old daughter that takes trileptal,she has been on it since she was 2 years old and it has controled her seizures she has had parital Epilepsy since she was two years old.my daughter has mostly suffers from starring spell seizures.When I was a kid I had the starring spells and they were the bad ones.I out grew it when I was 13 years old.The doctor we see for her has told us she should out grow the seizures by the time she is 12 years old. So I will be praying for you guys,if that is ok. I under5stand what you are going through.Trileptal is a really good med to use on her. it has helped my daughter by reducing her seizuries in a big way. The last one she had was at school in sept,two weeks after school had started.she has since only had the starring spells since.Please email me and tell me how the study goes.Michellemotsinger@yahoo.com.It is nice to hear about another mom with a child going through the same thimg i am going through with my daughter.She has alot of learning and emorinal problems.well i hope things go well for you and you daughter.My name is Michelle motsinger and my daughters name is Emma Marie Irene Motsinger.Well if you need to talk you can send me a message to me,

Ashley - posted on 02/15/2010

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My son has been on Trileptal for 2 yrs! Whenever he was 1st born he was on Phenabartial he still had seizures so they switch it to the trileptal! It has controlled his seizures since! Hopefully it works for u all too! God Bless!

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