Epilepsy in Children

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Benign Epilepsy of Infancy/Phenobarbital

Feb 2016

A few months ago my 9-month old was diagnosed with benign epilepsy of infancy and put on phenobarbital. A few weeks ago, she had a breakthrough tonic-clonic seizure and our neurologist has upped her dosage of phenobarbital. Has anyone had experience with infants on phenobarbital and/or epilepsy of infancy? Thanks! Oakland Mom

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Our son was diagnosed with Benign Myclonic Epilepsy of Infancy by a doctor at UCSF when he was 3. His experience doesn't really match what I have read about Benign Epilepsy of Infancy, so I don't really know if that diagnosis is accurate. Kaiser doctors simply say he has Generalized epilepsy. He has had tonic-clonic seizures (febrile and without fever), myclonic seizures and absence seizures. While he had many seizures, they were pretty spread out, with months between each event, and most but not all, occurred during a fever. His first seizure was at 9 months old like your child. At 3.5 he was prescribed Keppra. He was seizure free while on Keppra for two years. So under his doctor's care, we weaned him off the medication last summer. So far so good--no seizures. My experience after meeting with several neurologists and having lots of tests done (MRI, many EEGs, bloodwork etc), is that there is still so much they don't know about epilepsy. They don't know why our son has it and can't say for certain that he is out of the woods. He didn't seem to have any side effects from the medication, but we do often wonder if certain aspects of his personality (his is very moody--goes from loving and sweet one minute, to very upset and aggressive another) are a result of the seizures or whatever is causing them. My understanding is that many kids ''grow out'' of their seizures. I hope that it will be your experience as well.  maggie

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I am having a hard time remembering the specifics of the original post, but I saw the recent response and wanted to say that my daughter also has seizures and was diagnosed with Benign Rolandic Epilepsy. Hers have all been while she is sleeping and she currently takes medication to control them. Her seizures have been going on for about a year and she is now 6, so not in infancy. We too had EEG's and MRI's. There does seem to be very little known about the causes or the specifics, but our doctors have also reiterated that most kids will grow out of them. It is also hard with young children to be sure if some of their behavior is because of the seizures or even the side effects of the medication.

Wish I had more helpful advice, but wanted you to know that you are not alone and that it is likely you will be able to control them with medicine and my hope is that your child will also grow out of them.  I know I was very overwhelmed in the beginning and spent way too much time online reading things that probably weren't helpful. Suzanne

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Worried about giving my daughter epilepsy medication

Nov 2014

Wanted to get any feedback on parents who had medicated their children for epilepsy, specifically with Gabapentin. Or if your child has epilepsy and you chose not to medicate, how you made that choice. My daughter has been diagnosed with benign rolandic epilepsy. The doctor gave the option of medicine, but essentially gave us the choice of whether or not that was the route we wanted to take. Her seizures to date have only been while she is sleeping, so there is less concern with injury. They often happen when she is overtired, so we are really working to avoid that, but sometimes it is inevitable and she still has them. The seizures have also been getting longer which is just stressful to watch. In general my point of view is to avoid medicine if possible, but I also want to do what is best for my child and for the family and am just struggling to decide what that is. Searching the internet is definitely not helping and so few people have dealt with this, so was hoping the BPN community would have some advice or insights. Thanks! Concerned Mom

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I will speak to this from the perspective of the epileptic. I had adolescent epilepsy and was eternally grateful when we found a medication that kept me seizure-free. It freed me emotionally from 1) my fear of seizing in front of peers -- a social fear; 2) my fear of seizing when no one was around -- a legitimate logistical fear; and 3) my fear of seizing period.

Why suffer seizures when there is medication that can mostly control them? I haven't had a seizure since I was in my twenties -- that was when I was on a trial off-medication. I hated the surprise, the disorientation afterwards but mostly the return of all my fears. Then, I went off again when I wanted to conceive and my neurologist at the time convinced me to remain off, believing that I would no longer suffer seizures, but agreeing I could return to taking medication if needed. I have been seizure-free and am now 48 years old. If I began having seizures again, I would go immediately back onto medication. For the record, I took Tegretol. Sometimes modern medicine wins the day.

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If you want to use a nutritional approach, a ketogenic diet has helped many, many epileptics. A movie Meryl Streep had made (!) about this topic is called ''First, Do No Harm.'' Apparently, because the brain needs and uses quite a bit of energy and is mostly made of fat, eating high fat foods can provide a steady supply of fuel, helping to avert seizures. Quality of fat is important, of course. Dr Eric Braverman, MD, in his book ''The Healing Nutrients Within'' has a chapter on the amino acid taurine, subtitled ''Fights Seizures.'' Nori

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Ultimately the decision will be yours and your family's. But as an epileptic myself - since teen years - I would advise the use of medication to stabilize her and provide her with a modicum of quality of life as close as possible to ''normal''. I have been taking 1 medication ever since my diagnosis, and I have been seizure free for over 20 years. I am considered a high-functioning epileptic. Taking my medication has allowed me to go to school - through graduate level - , to be independent, to have a career, to drive at will, and to become a mother. My quality of life is the best I can make it. Would I give that away on the risk of loosing any portion of the above, and diminishing my quality of life because of a seizure that could come unpredictably, over which I have no control. Never! I wish you well in arriving at your decision.

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I know 4 people with epilepsy, including one who only has seizures when asleep, and they all take medication to control their seizures. Seizures are very stressful for your body to withstand. Seizures speed up your heart rate, contract the lungs so breath is pushed out of the body, and result in short-term memory loss. I would advise you to discuss the benefits of medication with your daughter's neurologist. You may even want to get a 2nd opinion at Children's Hospital, Oakland. Their head neurologist is Dr. Daniel Birnbaum. Even though your daughter just has seizures when she's sleeping, it would be very beneficial to her overall health if she didn't have to have seizures at all, if they can be controlled by medication. anon

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Thanks for reaching out. Your posting struck a chord with me in part because of your saying that ''so few people have dealt with this''. Childhood epilepsy is quite common, and many, many parents are dealing with it. One place to look for answers from other parents is the discussion forum at http://epilepsyfoundation.ning.com/forum

Now for your question: Seizures during sleep are not always ok. It's true that there is much less of a risk of falling or injuring oneself in some other way, - but the fact of missing out on regular deep sleep can be a real problem. My niece has epilepsy, and most of her seizure activity takes place while she is asleep. The parents decided against a number of treatment options. My niece is now a teenager. She has had very few seizures since going through puberty, but she is severely developmentally delayed and has many cognitive problems. It sounds like your daughter has fewer and shorter seizures, so the decision to treat or not to treat her epilepsy is of course different. My point is just that fall injuries aren't the only risk to consider.

As for Gabapentin: Epilepsy medications often require trial and error. A drug that works well for one child may not work at all for the next child, or may have unacceptable side effects. Gabapentin didn't work for my niece, but it may work for your daughter. Aunt

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My son started having seizures when he was around 18 months old. At first they were infrequent and we chose not to have him medicated but over the course of a year or so they became much more frequent and longer. The stress of watching over him while he had seizures was incredibly stressful for us as parents, but we were hesitant to medicate him because we were worried about the potential side-effect of Depakote (liver damage). Our pediatrician said that as long as the seizures remained infrequent and short, medicating was a judgement call on our part (this was about 16 years ago, so thinking on that may have changed). At first we worked hard to avoid his major triggers (fevers and lack of sleep) but eventually he was having them at completely random times.

Two things changed our minds about medicating him: he started being aware of the seizures as they were coming on and they really frightened him, and then he had a 20 minute seizure. After that, the decision to medicate was easy (although the task of doing it, and the associated blood tests for medication levels were hard). It took a little while to get the dosage right, but once he stopped having seizures we all breathed a little easier.

My younger child also had a few seizures, but it was nowhere near the frequency or intensity. However, her seizures occurred as she was entering puberty so they were much more distressing for her right at the start. We put her on Keppra for about three years.

Both kids were weaned eventually off meds, neither had any long-term effects that we've been able to discern.  Been There Twice

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I'm sorry that your family is going through this- it is beyond terrifying watching your child have a seizure. What I am learning about epilepsy is that there are a lot of variations in both diagnosis and patient, which is why I also find the Internet to be a difficult source for information.

I'm not sure if our story will help, but I'm happy to share: My 16-year-old daughter was just diagnosed with epilepsy. She had a grand mal seizure (unconscious) during her sleep when she was 15 and the neurologist said there was a strong chance she would not have another, so medication was not an issue. 14 months later, she had a complex partial seizure (unconscious), also while sleeping. The doctor said we would have to make a decision about medication and ordered a "sleep deprived" EEG to see if they could find any underlying cause for the seizures and get more information as to what part of the brain is involved. At that point I wanted to take a "wait and see" approach as I did not want to start her on meds until I felt sure she would have a third seizure, while my husband was ready to start meds. The doctor did not push for meds but helped us understand the risks if she were to go on them. During the EEG, she was able to fall asleep and had another seizure during the exam. The doctor immediately prescribed Keppra and she took her first dose that evening.

If she had not had another seizure, I would have been reluctant to treat her with meds until I was clear it was not random. We chose to medicate because my daughter has seizures while sleeping where she becomes unconscious and hers last longer than usual (4-5 minutes). She also vomits after a seizure, and so we feared she would choke on her vomit and not be able to wake herself up. Thankfully, she is tolerating the meds. The doctor suggested that we try and "wean" her off the meds in a few years, as she may outgrow the seizures. I hope you are working with a pediatric neurologist or epilepsy specialist. Our daughter has been treated at Children's Hospital and they have been absolutely phenomenal. I hear Stanford and UCSF also have excellent programs. anon

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Childhood absence epilepsy in 4 year old

April 2010

I'm posting on behalf of a friend, whose son (4.5 years old) has just been diagnosed with childhood absence epilepsy (CAE - in which the seizures manifest as very brief staring spells with no convulsions). My friend and her husband have been carefully researching the options for treatment and have consulted with several pediatric neurologists, but have found very little information on the outcomes of a 'watch and wait' approach instead of medicating. Has anyone had experience with CAE, and in particular, with the watch and wait approach; or know of any relevant research? Thanks concerned friend

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My son had absence seizures which he was diagnosed with at around 8 years old. In his case, he would see things out of the corner of his eye (wolves, for instance) and would go absent almost imperceptibly) A neurologist put him on Neurontin, but my son hated it and refused to take it. He said it made him feel ''weird''. So I figured we'd just wait it out and see what happened, which is not really my advise, but in our case he did outgrow it. My son was triggered by strobe lights, or any fluorescent lights that had a pulsing effect (sometimes this is almost subliminal and hardly detectable by most of us). We did research on what kinds of things might trigger him and used avoidance techniques. I'm not saying your friend should do this, as there are different causes/outcomes of seizure disorders, but in my son's case, being careful and aware kept him safe and eventually he outgrew it for some reason. Anon

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Hi, We are in a similar situation as your friend. Our son is not yet 3.5, and we are watching and waiting too. We saw a pediatric neurologists at Children's and decided to not try medication at this time. We thought of changing our minds and then spoke to one of the nurse practitioners there. She was lovely--took time with me on the phone. One thing she said is that if we feel like the spells are affecting his ''quality of life'' or if developmental milestones were not being acheived, you might look at medication. Quality of life can mean many things to many people...like social stuff, does he want to play sports and can't because of attention issues, can he follow at preschool to have fun and learn...We might go the med route someday. We feel it will be more apparent if he needs help with medications as he gets a bit older. If you want to give my contact info to your friend, I'd be happy to talk with her/him. BTW, I have epilepsy. I played sports in college, had two beautiful boys with my husband, and went to graduate school--all while highly medicated! 

One more thing: tell your friend to check out epilepsy.com. It's a great website. They have a community forum that they might post on to get the info they need. Laura

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I would encourage them to consult with the Stanford Epileptic Center one of the most renowned epilepsy centers in the country, if they have not already, they are very much about progressive treatments and most importantly quality of life both for the patient and the care-givers. Epileptic since my teen years...

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Absence epilepsy diagnosis for 6 year old

Nov 2008

My 6 year old child has just received the diagnosis of having absence epilepsy--a mild form in which the child stops whatever he/she is doing, stares for a few second and is non-responsive and then goes back to normal. I know this is not he end of the world and is treatable (ok, right now I am a bit sad about this).I wonder if there are families in the list in the same situation that could share their stories with me. I feel I need to learn more from other families/patients. I would also like to know if it is possible to treat that with alternative therapies such as homeopathy, acupuncture etc (not that I will be trying, but I am very eager to learn about such cases). Thanks.
Concerned mom

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hi - I didn't receive your specific diagnosis, but another. The neurologist recommended drugs which I did ... my huge regret is not getting a second and third opinion before taking such significant steps. I urge you to explore all alternatives and getting a second opinion on the diagnosis and treatment options. Hang in There!

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I hear your pain. My son has epilepsy too. It was diagnosed 2 years ago, when he was 9 years old. Since that time things havn't been as bad as I had feared, and are mostly under control. In terms of alternative therapy, I do give him an omega 3 suppliment (fish oil) every morning. I don't know that it has done him any good, but it seems like some experts feel omega 3 is good for everybody. Not to be glib, but on the plus side, I know my son can never be drafted. Best of luck

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Dear fellow concerned Mom, when my son turned 6 yrs. old he came down with absence seizures. The triggers seemed to be related to pollen allergies, an abnormal brain development, and stresses in the home and environment (starting of school). I have been going through 5 years of a painful but educational growth- through trial and error processes and might be able to provide you with a lot of helpful information that I would have been happy to have had at that time. I think it is more efficient to talk about all the details on the phone and if you are interested please send me a short email and we can get together on the phone. Doro

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You didn't say how severe a case your child has, I'm assuming it is fairly severe since you sought medical advice. Anyway, we have a very mild form of something like this in my family - we call it ''the STARE'' and joke about it. None of us have ever needed treatment for it, but I wanted to say that if your doctor decides to treat with Lamictal, I strongly suggest trying a very low dose. The reason I say this is that I took Lamictal for bipolar disorder and found it to be effective at a very low dose. Sometimes it takes a while for doctors to figure out appropriate therapeutic levels for new drugs. I am not a doctor, I just think it is worth giving the lower dosage a chance to work. Wishing you luck and strength

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Although neither homeopathic remedies nor acupuncture will help your child's epilepsy (and acupuncture or tainted homeopathic remedies from China could worsen it), I have seen research indicating that fish oil, exercise, and Co-Q10 might improve brain health: http://hdlighthouse.org/TreatmentNow/updates/0000omega3.php Hopeful

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I asked one of my closest friends whose child has epilepsy if she had any specific advice for you. Here is what she wrote: ''DEFINITELY get in touch with the Epilepsy Foundation in Nor Cal. http://www.epilepsyfoundation.org/local/norcal/people.cfm. Talk to Neva Hirschkorn. Also see http://www.becketfilms.com/index.php and click on Childhood Epilepsy link. I totally understand the sadness, yet education is the best thing. Classical absence isn't too bad; atypical absence can sometimes be difficult to control. She needs to make sure she gets the right doctor/right meds. Also, keep an eye on school performance. If grades are suffering get an evaluation through the school district and get an IEP if necessary. Be persistent; if her kid needs help, he/she has a full legal right to it, especially if there is a diagnosis like epilepsy.'' Hope this is helpful... best, Susan
 

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Benign Epilepsy Of Childhood

Nov 2003

My son has had two unexplained seizures, five weeks apart. He is four and very bright, energetic and happy. He had a CT scan and sveral blood tests which were completely normal. We have an EEG scheduled at Children's a few weeks from now. Both episodes came on about 2 minutes after my son fell asleep and has always done brief and minor twitching in his sleep. From what his ped. says, these characteristics are textbook ''Benign Epilepsy of Childhood''. I am just wondering if anyone has had any experience with this or any other seizure disorder in preschool aged-children?

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My son (now 12) has had very occasional seizures since toddlerhood. We did not realize that he was having seizures until he was about 10, when he had a BIG one, in his sleep, that lasted about 4 minutes. 911 was called and he was taken to Children's Hospital. Tests were conducted and all was found to be normal, the diagnosis given was benign childhood seizures. The doctor told us that they would taper and diminish by puberty (about age 14). In retrospect, he had probably had several seizures, always in his sleep, that I had thought were something else (night terrors, for example). We have a history of brain tumors in my family (mother, maternal aunt, sister) that have manifested themselves via seizures so I was PANICKED! He has not (to my knowledge) had a seizure for about 2 years but he is a very agitated sleeper (teeth grinding, wierd breathing noises) so it is possible that some may have slipped by. When he was diagnosed I was so worried that he would have a seizure while away from home. With his consent, we told the adults at his school and his teacher let the other kids in his class know (they were allowed to ask him questions), which interestingly enough was of great relief to him. When invited on sleepovers, I always let the parents know, I have been amazed at how many of then have experience with this type of disorder (themselves, a friend's kid, a sibling, etc). Make sure you trust your doctor and don't hesitate to get a second oppinion. There is information online (healthcentral.net) about this disorder because it is so common (esp. in boys). Good luck! Susan

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I live in Seattle, but my brother who lives in Berkeley (and subscribes to the network) forwarded your question to me.

My son does have Benign Rolandic Childhood of Epilepsy, which I think is the same thing you're talking about it. (The rolandic part is just the part of the brain that is mainly affected.)

First of all, know that I understand how frightening and confusing this can be. You think you have all your child's idiosyncrasies figured out by the time they're in preschool, and then something like this comes up! My son was 7 when he had his first seizure (which were actually two of them, about seven hours apart). My husband and I were so frightened. We called 911, went to Children's Hospital, got him all checked out, brought him home, and he had another seizure. All his seizures occur shortly after he falls asleep, or at a change in his sleep pattern -- apparently it has something to do with sleep cycles.

To make a long story short we saw several neurologists, until we found one who would really hear us. We've had 3 or 4 EEGs and two MRIs. The first EEGS were abnormal (which just indicates that there is seizure activity going on -- more about this later) and the MRIs were both normal. Our latest EEG (nearly two years after the first seizure) was normal. We started him on Neurontin, and he continued to have seizures. He was switched to Keppra and had only one seizure on this medication. He's been seizure-free for one year and four months! (There's hope! You'll get through this, and your son will be fine.)

The good news is that if the diagnosis is accurate, there's a very good chance that he'll grow out of it by the time he's 16 (I think that was the age we were told). Most kids with this type of epilepsy have their first seizure sometime between the ages of 5 and 9 ('though it sounds like your son may have started early).

The EEGs are a strange thing, though. You can have a normal one but still have seizures, or an abnormal one, but never manifest a seizure. I'm told the EEGs are a ''guide'' but not an absolutely reliable indicator of what's going on.

Another thing we learned is that sometimes there are twists on this type of epilepsy that can include behavioral issues or language processing issues. Our son had difficulty finding words for about six months, until he was switched to a more effective medicine. Two neurologists said this wasn't a possibility, but our final neurologist had just read an article in a neurology journal about this syndrome. If you ever need a copy of the article, let me know. (It's a pretty rare thing, I think.)

From what I understand, lots of kids with this type of epilepsy don't even need medication, depending on the severity of the seizures. However, there is some new research about seizures and their effect on the brain. You might want to ask about that, if your doctors recommend no medication.

I guess my main advice is to keep looking for a neurologist who HEARS you and answers your questions, who you feel you can really rely on. Our doctor, Sarah Cheyette, recently moved to San Francisco. I don't know if she's started her new practice yet. I truly feel for what you must be going through. We were there! Your son will be fine, you will be fine (but will probably not remember this time in your life very fondly), and you'll learn a lot. Rebecca