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EEG says no seizure, What is he having?
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stumpednow posted:
My six-year ols son had an attack about six weeks ago. About 4 AM we heard weird noises frm his room. Rushed in to find him unresponsive, face twisted, with a rattling noise coming from his mouth. By the time it was over, he was drooling. Terrified since we have never seen anything like this before, I called 911. A battery of tests at children's ER came back all clear. EEG came back normal. But, the episodes continue. They come in two forms: The first is a terror attack during which he will run and hang unto mom or dad until all is well again (about 10-15 seconds). It happens without warning several times a day. The second is the face-twisting, noise-making and drooling type that I described above, and occurs about once a week. Neurologist admitted him to the hospital for a continuous EEG with video monitoring during which he had several of the terror attacks but none of the face-twisting type. After four days of around the clock EEG with video monitoring, neurologist sent us home assured that he wasn't having seizures. That was two days ago. Yesterday, he had three of the face-twisting type, one at night, two during the day along with some of the terror ones. So, what is wrong with my son who is otherwise normal and healthy? He has no other health issues. Any help will be appreciated
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phylisfeinerjohnson responded:
One possibility is that your son's terror attacks are seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It's a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.
Another possibility is that since his "contortions" didn't happen during the EEG, they might not have been picked up.

First of all, I would find a second consult with a Pediatric Neurologist. I have some pediatric recommendations from eforum members of the EFA, based upon positive personal experiences. Maybe, one of these might help you.

Pediatric Recommendations

Arizona
Dr. Kevin Chapman (Pediatric Epileptologist/Neurologist), Barrows Neurological Institue, Phoenix, AZ

California
Dr. Nutik, Kaiser-Redwood City, CA
Dr. Joyce Wu, UCLA Mattel Childrens Hospital Division of Ped. Neurology, CA

Georgia
Dr. Robert Flamini, Scottish Rite Children's Hospital, Atlanta, GA

Illinois
Dr. Marianne Larsen, Children's Memorial Hospital, Chicago, IL

Indiana
Dr. Vicenta Salanova, Riley Hospital for Children, Indianapolis, IN

Maryland
Dr. William R Leahy, Greenbelt, MD

Massachusetts
Dr. Adjani, UMassachusetts Medical Center, MA
Dr. Blaise Bourgeois, Children's Hospital of Boston, MA
Dr. Laurie Douglass, Boston, MA
Dr. Ronald Thibert, Massachusetts General Hospital

Michigan
Dr. Harry Chugani, Detroit Childrens Hospital, Detroit, MI
Dr. Eileen McCormick, Michigan Institute for Neurological Disorders (MIND), Farmington Hills, MI

Minnesota
Dr. Mary Dunn, St. Paul Children's, St. Paul, MN

Missouri
Dr. David Callahan, St. Luke's Hospital, West Chesterfield, MO
Dr. Richard Torkelson, Childrens Mercy, Kansas City, MO

New Jersey
Dr. Steven Kugler, Robert Wood Johnson, NJ
Dr. Wollack, Robert Wood Johnson Hospital, New Brunswick, NJ

New York
Dr. Claudia Chiriboga, Columbia Presbyterian, NY
Dr. Gail Solomon, NYU Comprehensive Epilepsy Center, NY

North Carolina
Dr. Darrell V. Lewis, Duke Children's, NC

Ohio
Dr. Kerry Crone, Children's Hospital Medical Center, Cincinnati, OH

Pennsylvania
Dr. Khurana, Pediatric St. Christopher's Hospital Philadelphia, PA

Tennessee
Dr. Barbara Olsen, Pediatric Neurology Associates, Nashville, TN
Dr. James Wheless, Le Bonheur Hospital, Memphis, TN

Texas
Dr. Imad T. Jarjour, Houston, TX
Dr. Anthony Riela, Texas Child Neurology, Plano, TX
Dr. Angus Wilfong, Texas Children's Hospital, Houston, TX

Wisconsin
Dr. Kurt Hecox, (spec. epilepsy) Children's Hospital of Wisconsin, WI
Dr. S. Anne Joseph, (pediatric neurology), Children's Hospital of Wisconsin, WI
Dr. Mary Zupanc, Childrens Hospital of Wisconsin, Milwaukee, WI

Also, there are other kinds of tests you might want to explore. Take a look at Beyond EEGs"026Diagnostic Tools for Epilepsy
http://epilepsytalk.com/2010/03/31/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy/

Hope this helps!
Phylis Feiner Johnson
www.epilepsytalk.com
 
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stumpednow replied to phylisfeinerjohnson's response:
Thank you phylisfeinerjohnson. We will pursue that avenue as well. His current neurologist is a board-certified pediatric neurologist who is associated with a major university hospital in this city. But, he is the only one around here. Before sending us home from the hospital, he did say that my son's problems may be emotional. But, he did not recommend what we should do next. My son has not had any serious trumatic or stressful issues that I can recall. We have asked my son's pediatrician to recommend another pediatric neurologist, obviously in another city. Mom and dad are prepared to do whatever it takes to find answers.
 
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dancer86442 responded:
Good Morning Mom,

I am glad you are seeking a second opinion. The more opinions the better.

Unfortunately, Video EEG's are not always correct, either. My daughter has been in an EMU 3 times over the past 10 yrs. Twice have been w/in the last yr. Why? Well, First time, numerous seizures over a 10 day period. 2nd time, (Nov '09) NONE over a 4 day period. 3rd time (Jan '10) 1 & a change in medications. Her seizures are controlled so far, but, she is having an adverse reaction to her new med.

Do you have a camcorder? If not beg, borrow or buy one. Keep it charged & available! Record your son's 'episode' yourself. Show THAT to the DRS &&&& Keep a Journal. More info on what to include located to the rite under Tips.

Info for you & Questions for the DR: http://www.nomoreseizures.com/

Note the stats for those w/ Epilepsy/seizure disorder & 'no cause known'.

Best Advice to parents: Learn ALL about seizures & seizure first aid. Remain calm, becuz, Your child can sense your concerns & could be stressed more. (Stress can induce seizures, too) Continue to treat your child as 'normal'. Educate him, too. Epilepsy Foundation.org has recommended books for all Ages. You mite ask your local "Research Librarian' about availability of these books, too.

Here is a description of various, common seizure types. I believe 'terror attacks' MITE be a symptom of seizure, too. But, the 'focal point' (origination) may be buried to deep in his brain to show on EEG. http://www.faqs.org/faqs/medicine/epilepsy-faq/

Hope this helps. Keep us posted. We're listening if you need to rant/rave/question or just wanna connect w/ ppl who understand.

Love Candi
 
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stumpednow replied to dancer86442's response:
Candi,

Thank you very much. Your suggestions make perfect sense. We will follow them. The advice of those who have been there is extremely important to us at this point.

God bless.
 
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terry456 replied to stumpednow's response:
my daughter had psychogenic seizures for nearly two years and she was in and out of three major hospitals on a regular basis as well as referred to multiple psychiatric, psychological, neurological sections as well as maintaining her on many different medications over those two years -none of which stopped the seizures. Finally, we tried cranial sacral and myofascial treatments and after just two treatments her seizures were gone. We went twice more to John James in Dallas who has done this for 19 years and he said she didn't have to come back. Apparently, part of the cause of the seizures was not just the emotional stressors that had been previously identified, but also some energy blockages in her back and neck from a wreck. The multiple CT scans and MRI's didn't show anything. It doesn't matter, she is high functioning and happy again and having no seizures after three months. A video example of cranial sacral technique can be seen at http://www.alternativehealthtreatments.org and probably on youtube as well. I hope this information helps as although it is not traditional medicine, it surely has helped us more than you can ever know.
 
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DUKE MEDICINE
Rodney A Radtke, MD responded:
It is rare for a child this age to have psychogenic seizures. The events you describe (although different during day vs. night) sound very stereotyped, in that the behavior and duration is the same each time. The fact that they are stereotyped suggests that these are epileptic seizures. Individuals with frontal lobe seizures can sometimes have EEGs that do not change during an epileptic seizure. Children this age can have sleep terrors that can resemble seizures, but would not have problems while awake. I agree with your plan to see another pediatric neurologist, ideally one that specializes in epilepsy.
 
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Amypapalia replied to terry456's response:
HI

I am hoping that 3 years on you will still receive this message. I'm from Australia and the same thing is happening to my sister in law. When you say 'wreck' do you mean a car accident? My sister in law has had seizures in the past and she was in a minor car accident and has been having seizures ever since (about a week now). Her EEG recording is normal so they are dosing her up on anti psychotic medication. She has never complained or exaggerated in her life and I'm sure they have it wrong. I'd be extremely grateful for any input. I am looking into the cranial and myofacial release as the first option. Thanks so much, Amy
 
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dancer86442 replied to Amypapalia's response:
Hello Amy, Yes, Terry was referring to a Car Wreck. She hasn't updated us, though. Normal EEG's can happen for various reasons. Most times, it's because no seizure activity is present at time of test. Then there is the possibility that the Origin (focal point) is buried to deep in the brain to detect w/ normal EEG. Was she diagnosed w/ Psychogenic/Psuedo seizures B4 the Wreck? Have you considered seeking a Chiropractic Specialist, also?

HUGS

Merry Christmas Love Candi


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