Childhood Epilepsy
http://thedianerehmshow.org/shows/2010-08-23/childhood-epilepsy
More than half of the nearly 3 million people who have epilepsy in the U.S. are children. What causes childhood epilepsy, treatments currently available and advice for families coping with this complex disorder.
Guests
Dr. Angel Hernandez
Medical Director, Comprehensive Epilepsy Program
Cook Children's Health Care System, Fort Worth, Texas
Joan Austin
Distinguished Professor Emerita, Indiana University School of Nursing
Dr. Eric Kossoff
Associate Professor, Neurology and Pediatrics
Johns Hopkins Hospital
Medical Director, Ketogenic Diet Center
Director, Pediatric Neurology Residency Program
Video From the Mayo Clinic
Dr. Elaine Wirrell, a pediatric neurologist at Mayo Clinic, describes how childhood epilepsy is diagnosed and treated at Mayo Clinic:
Comments
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Looking forward to this report, as my 3 year old was just diagnosed. Feeling scared and looking forward to some answers and rays of hope!
The brain of children is enormously plastic. In severe cases of epilepsy, hemispherectomies have produced great improvements. Johns Hopkins University Hospital has led a successful neurosurgery program in this respect. Perhaps your guest can comment on this unique program.
Read more here:
http://brainmindinst.blogspot.com/2009/04/hemispherectomies-brain-plasti...
My grandaughter developed epilepsy at age 13. What are the predictors that she will be seizure-free in adulthood?
My 8 year old niece has been having petit mal seizures for the past few years. She has a very restricted diet due to other health problems, however, it does seem like the seizures are more abundant when she eats refined sugars and when she is under stress. Could you please comment on this?
Suzy Ogawa
Ann Arbor, MI
Our 17 year old son had epilepsy which was -- we thought --quite well controlled. All of his seizures were in his sleep -- and he had had one seizure in 18 months -- when we found him one morning dead in his bed -- a diagnosis of SUDEP --- a heart arryhthmia apparently happening during a seizure.
We later have found out this is more common than we ever knew. No one ever talked about this to us before he died....
There is a woman that works with me she's 33 and she has seizures and last month she had 5 total and 2 was like hours apart. The first one she was in a car accident on her way home from work and totalled her car. What surprised me was that they gave her a rental car knowing this and she continues to drive. When she has seizures at work what is the correct way to deal with her when she have them at work. She spin around and yell loud and throw her arms out and we have been holding her still and I was told that was not the correct way to help her. One more thing is it safe for her doctor to release her to return to work after the car accident. I am so worried for her.
I am a Registered Dietitian who works with the KD. Just a quick accurate description of what an every day meal is on the diet. WHen you look at the exact components and AMOUNTS of certain foods allowed on the diet, your listener's opinions of difficulty in sticking to the diet may change. Sample meal for a 3 year old. 3 ounces heavy whipping cream, liquid...2 Tbls chicken breast, 3 Tbls butter and 2 Tbls olive oil, 1 Tbls strawberries. This is in addition to a slew of nutritional supplements as well.
Thank you for today's wonderful program. My daughter is now 4 and began having seizures when she was 3 months old. She had some periods of seizure freedom with medication but after trying 7 medications without complete control she was approved for surgery. Last September she had a large portion of her left hemisphere removed and I'm happy to say has been seizure free since. Her quality of life has improved dramatically, and her development has improved as well, even with a large portion of her brain missing.
My daughter's epilepsy has by far been the most painful experience of my life but I am so fortunate that she has had the outcome that she has. To the poster above whose son died of SUDEP...my heart goes out to you. I am so very sorry.
We have a remarkable history of febrile seizures in my family (both my husband & I, my father, plus other relatives in the extended family). My son started having seizures when he was 8 months old, but it soon became clear that they were not "just" febrile seizures, since he had several different seizure types (tonic-clonic as well as atonic), they were more frequent than febrile seizures typically are, and they would often occur even when he did not have a fever. We had genetic testing done, and it appeared from the report that my son might have a marker for a genetic condition such as GEFS+ that could be the underlying reason for his seizures. Unfortunately, only my son's testing is covered by our health insurance. While the doctor would like to test my husband and I as well to determine whether one or both of us has the same marker, genetic testing costs thousands of dollars per person and we aren't in a position to self-pay for that.
Are there any organizations that fund genetic testing relating to epilepsy within families, for research or treatment purposes?
Our son has a genetic condition and began having seizures just after he turned two. His first seizure was in the late afternoon and lasted approximately 2 hours. His doctor immediately placed him on Keppra. He has had about a seizure a year since then and we have been advised to increased his dosage each time. He is now going on six years old. His last seizure was a year ago in the middle of the night (as all of the seizures have been after his first) and I just happen to catch him having them.
At a recently neurology visit I thought to ask if we could in the future take him off of the Keppra. The doctor replied that in very rare cases SUDEP does occur. He said it generally occurs at an age when kids begin taking (or not taking) their medication on their own and forget to do so. I was not sure what to think of his reply but upon seeing your post, I see it does happen.
I am very sorry for your loss. This is something I have feared since my son's first night seizure.
My daughter was diagnosed with intractible epilepsy (and had partial complex seizures) at Johns Hopkins when she was just a few months old. Since that time, we moved to Idaho, but continued to be followed by her neurologist there. After the failure of multiple drugs, some success with the ketogenic diet and watching our child go backward developmentally, we opted for surgery to remove the seizure focus when it finally showed on the MRI this past February. I am writing this note as a (now) well-rested, stress-reduced Mom and am thrilled to report that after removal of my daughter's right temporal lobe and hippocampus, she has been seizure-free since her surgery date of July 1 (nearly 2 months!). Our daughter started life by having 25- 40 seizures daily, then over time, 2-6 daily. We are singing the praises of the wonderful folks at Johns Hopkins! P.S. For the person who posted about seizures spiking with refined sugars and stress, our seizures did the same thing- as well as altitude changes. Strange, but true. I still can't give my daughter ice cream or cake without worrying.
Types of Seizures
-Generalized Seizures
Generalized seizures affect both cerebral hemispheres (sides of the brain) from the beginning of the seizure. They produce loss of consciousness, either briefly or for a longer period of time, and are sub-categorized into several major types: generalized tonic clonic; myoclonic; absence; and atonic.
-Partial Seizures
They are not dangerous to others. The movements produced by a seizure are almost always too vague, too unorganized and too confused to threaten the safety of anyone else.
In partial seizures the electrical disturbance is limited to a specific area of one cerebral hemisphere (side of the brain). Partial seizures are subdivided into simple partial seizures (in which consciousness is retained); and complex partial seizures (in which consciousness is impaired or lost). Partial seizures may spread to cause a generalized seizure, in which case the classification category is partial seizures secondarily generalized.
Partial seizures are the most common type of seizure experienced by people with epilepsy. Virtually any movement, sensory, or emotional symptom can occur as part of a partial seizure, including complex visual or auditory hallucinations.
www.epilepsyfoundation.org
To mchumel: I am sorry for your loss. Unfortunately, the cause(s) of SUDEP is(are) currently unknown, but heart arrhythmia is one of several theories under consideration. If you would like further information about SUDEP, or to be connected with other SUDEP-affected families, please contact us at SUDEP Aware (www.sudepaware.org).
Tamzin Jeffs (Executive Director/Co-founder who lost a sibling to SUDEP).
My daughter began having complex partial seizures at the age of 8. The seizures were intractable to medication, and she had a partial left temporal lobectomy one year after the seizures began. Approximately 2-1/2 years following her epilepsy surgery, a large ovarian teratoma was discovered and removed. Googling "complex partial seizures" and "teratoma," I discovered a link between the two: paraneoplastic limbic encephalopathy. At the University of Pennsylvania, a man named Josep Dalmau has done a lot of work on anti-NMDAR antibodies, which presumably are formed by the body in response to tumors (my daughter's, for example, had a large percentage of neural and brain tissue), but which then also work against the brain. Other antibodies have also been investigated. These antibodies lead to damage of brain tissue, which can then cause seizures, personality changes, and other problems...in extreme cases, even death.
I am wondering when it might be realistic to use some of the blood tests which have so far been developed, in an attempt to find, or rule out, tumors as a cause of epilepsy. I have found, as well, that a very limited number of people are aware of this phenomenon, which can, for some people, become quickly life-threatening, and wonder how more neurologists might become educated about it.
I just wanted to publicly thank Dr. Kossoff and the Johns Hopkins staff for being there for our 6-year-old daughter who has epilepsy. After she failed about four medicines, we discussed the ketogenic diet with her local neurologist who said, "It will work, but you'll never be able to stick to it. It's too hard." Well, guess what? Under Dr. K's care, she has had her life restored thanks to the ketogenic diet. Is it easy? No, it's not (but it is do-able). How easy is it to watch a child fall over unexpectedly 30 times a day from seizures? Or to head to the ER every month? Or to teach a drugged up zombie the alphabet? So two vegetarian parents now proudly feed their beautiful child pork rinds with butter each and every day for lunch! :)
My 13 year old daughter recently experienced a generalized seizure while at school (she had no history of seizures or epilepsy). She was immediately diagnosed with Tuberous Sclerosis, a genetic disease, that often causes epilepsy. She does have brain tumors as well. First, as part of Tuberous Sclerosis she fell into the few who develop giant subependymal astrocytomas (large tumors in the ventrical of the brain that develop beneath the brain tissue). She also has many tubors on the cortical region of her brain. At first we (her parents) figured the seizure was caused by the growing brain tumors that caused pressure (the giant subependymal astrocytomas) and were removed. But then it was explained to us that the large tumors did not cause the seizures, rather it was the smaller tubers on the cortical region of the brain. An EEG was done and confirmed this finding and indicated that she is likely to suffer more seizures. Thus, she is now on a good dose of Keppra and has been seizure free since we left the hospital (Duke) in late April of this year. My question is - is it possible that the seizures will never occur again even though she is diagnosed with Epilepsy? She was seizure free for 13 years prior to brain surgery and discovery of her large ventrical tumors. How long do you have to be seizure free before you attempt to go off Keppra and other anti-seizure meds? I read the sad story above about the young man who lost his life during a night seizure and now I am scared to ever take her off the medication.
First to mchumel, I have imagined in my nightmares what you have experienced with the death of your son. I am so sorry. You must miss him very much.
I too have a son with intractible epilepsy. He is now 7 years old but developmentally about 2 years old likely due to his brain being injured from the repeated seizures. We adopted him from China when he was almost 4 years old. We have no genetic/birth/medical history from before he was adopted. We are at the end of the pharmaceutical options. We've tried every medicine approved for treatment. He had an MEG test done in January and the results showed too much seizure activity in both lobes of the brain to qualify for the surgical option we were so hopeful would work. He had a Vegus Nerve Stimulator (VNS) implanted last week and will have it turned on next week.
Has anyone here have experience with the VNS?
http://www.nytimes.com/2010/07/27/health/27epil.html
Loved the show- wish I had caught it live...Our 13 month old developed infanitile spasms at 6 months. We noticed the spasms-head drops and involuntary arm raises. It scared us thoroughly. We did what parents do-went to pediatrician, scheduled EEG to prove out. It did. Then we had "see a neurologist" Thank goodness, we contacted Hopkins, they treated this swiftly and effectively. Dr. Kossoff and team are the best! After reviewing Tyler's (brief) medical history, a second EEG and witnessing the spasms and a thorough examination by the team, we were provided choices: Drugs, Steroids or Diet- the Ketogenic Diet. Dr. Kossoff recommended Diet. We did. Long story short- within 6-9 days of being on the Ketogenic Diet, the spasms decreased to ZERO. It is amazing- miraculous... The diet requires some involvement, but the folks we work with at Hopkin's Epilepsy Center are tremendous- there is technology- Keto calculating websites etc which makes the diet much easier than what we understand it used to be like. For young children, especially infants- this diet is the BEST choice-in our eyes. There is a formula which is easy to use, and our little boy drank it with out issue or hesitancy. This past Tuesday-the 24th, our 13 month old returned to normal food intake.
Dr. Kossoff and team are the best- case closed. What a Blessing to have Johns Hopkins University Hospital in our backyard. What an amazing journey this has been. I'll stop here, but I/we owe these professionals and this diet our non-stop gratitude.
Is there any way to download the shows so I can upload them to my ipod? I know some shows are already available on itunes, but not all (including this one). Any advice would be greatly appreciated!
If you know anyone struggling with epilepsy in the Southern California area, please visit www.epilepsysupportnet.org. We are a 501 c 3 non profit dedicated to building a community of support for indidviduals with epilepsy through education, programs and advocacy. We offer expert guest speakers ad our educational meetings and Epilepsy 101 classes as well as community presentations. We can answer many of the posted questions.
I to am also epileptic, I feel it is great when neurosurgery is an option & keep hope for the one's that don't have it.