..."derived from the Greek word "epilambanein", which means "to seize upon", "to attack". Thus epilepsy is a seizure or rather a disease which causes seizures to occur."
Growing up as the only child of a single mom in the Air Force, I had the experience of living a great part of my childhood in Sacramento, California from the age of about 4 until I was 11. During my elementary school years I was always on the go, on my bike exploring my community. It was a different world then. One day when I was about 10 or 11 years old I had gone into a nearby grocery store to get a snack and while I was waiting in line at the checkout the elderly man ahead of me was trying to buy some beer but apparently he didn't have enough money. He seemed confused and angry, and I thought "I need to back up a bit". When suddenly he began to bang his fist on the counter and then fell on the floor at my feet locked in convulsions! I stood there in shock, mouth agape, while he convulsed. The smell came to me then as he involuntarily evacuated his bladder. I was even more stunned that not one of the adults in the vicinity did ANYTHING to help. Everyone just stood there staring at him. I, having just taken a CPR class at school that very month, remember thinking I have no idea what this man needs. No one even reached for the phone. Thinking back; I seem to remember a look of revulsion on their faces, rather than concern or even pity. Eventually after a few moments, the spasm relaxed and the man lay there breathing. I thought "Good, I don't need to help him breathe." As a young girl, I was happy about that- for me. Finally the man got up off the floor on his own and I watched him limp out of the store, swaying a bit but unaided. Then all the air came back into the room when the cashier suddenly asked me, "You want to pay for that Coke?" The moment ended, and I remember it still.
Until recently I had believed it was the only time I had ever seen a real seizure up close.
Before my son was born, I was a mother to three daughters, a Navy wife. I was living a different life then. One I thought was fairly settled. I assumed my life would go on pretty much the same as my girls grew up, eventually I would retire, there would be grand children. And that would be that. Then my marriage ended and after a while I remarried. A different husband, and more children. A whole new life.
When my son was born we named him Sidney- after his dad. We called him Bear. I remember him as bright, alert, cuddly. There were those unpleasant moments right after they brought him back to me- after they had given him his shots and circumcised him when he seemed unable to figure out how to suck; but the lactation nurse explained to me,
"Some babies just have a little trouble".We brought him home, and he was perfect. He was about 6 months old when we were moving into a bigger house. To keep him safe and out from underfoot while we traipsed back and forth with boxes and furniture he had to spend a few days in the playpen. He was not happy about that. He had been running a bit of a fever ever since he had his 6 month shots. That was when - for attention we thought- he started banging his head on the rail of the playpen. It was only because we weren't holding him, he would stop soon. He won't need to wear the bicycle helmet long. But he didn't stop.
"But he latched on just fine as soon as he was born?" I queried.
"Oh, really?" She smiled. A perfect volley.
After that, everything I thought I had learned about being a mom began to change. This baby would not be transitioned to a sippy cup at 9 months, like my girls. He screamed in a way that I could not get through. His babbling talk did not go away entirely, but it did not progress into words either. Soon our family was held hostage to frequent screaming fits. Baby food always thrown in the floor. His rage seemed immeasurable and always relentless. We learned which cup, which plate he preferred to eat from. I learned to cook a perfect UN "broken" fried egg- or face the Bear.
I would take him to his pediatrician and I would ask- at every well visit,
"Isn't this Autism?"
"No-no," She would soothe me, "See he KNOWS he is banging his head, I can prove it."
"But his forehead, his bruises?"
"I can prove it. Take his helmet off in the gravel driveway... I guarantee he won't try to bang his head in gravel." She smiled - so confident.
And she was correct. When we got home, I saw he was cranky in his car seat. He had just had his shots, so that was "normal" the fever was getting higher. I let the girls go inside and took him out of his seat standing him in the gravel driveway. I took off the helmet. He didn't even look at me, just dropped to his knees but just as he was about to bang his head in the gravel, he stopped, got up and moved over to the grass. Then he dropped again, and started slamming his head into the ground. I picked him up and put the helmet back on his head while he screamed and kicked. Time for more acetaminophen.
It wasn't until years later that I accidentally learned that artificial food dyes might be responsible for my husbands frequent fits of rage. I began eliminating dyes and other chemical additives from our diet and saw the results. My eldest daughter stopped having so many migraines. My two middle girls weren't so hyper and my littlest girl was less moody. So my Bear began to change too.
Today Bear is 16. He is very different. his occasional meltdowns are much less violent. Today I know he seems to have two different kinds of meltdowns, one that is accompanied by screaming and slamming doors, and slapping his own face and sometimes the head banging. and another that I have always thought of a "Shutdown". The meltdown you can usually see coming. The frustration wells up, faster then anything you track in a so-called neuro-typical person- but my battle trained eye can see it. I can't stop it, but I can see it coming; like a grenade whistling towards you.
The Shutdown on the other hand, is different. it comes without apparent warning. Sometimes in the middle of a lively conversation. My question falls flat as his lips purse, then his chin hits his chest. He's gone. He will stay like that now for anywhere from 5 to 20 minutes or more. If we are at home, I have learned to simply stop talking and go on to something else. If necessary sometimes I can pull him into a standing position and walk him to his bedroom where he will lie down and sleep it off. Other times he will eventually slump over and sleep right where he is.
I used to try to ask him questions afterward, when he looked "normal" again.
Me- "Bear, what went wrong today?"
Bear- Blank stare
Me- "Remember, when we were talking about _________ and you wouldn't answer me?"
Bear- Blank stare
Then one day something changed. During our family Bible study in a "typical" fashion when asked to read a scripture Bear suddenly and without warning "Shutdown". We waited a moment to see if this would pass then moved on without him. After a few minutes he slumped over and went to sleep. We finished our Bible study and went on with our day. Later, I noticed he had gotten up at some point and gone to his room, still sleeping. Not unusual. About 3 hours later he came from his room, looking sleepy. I gave him his dinner and looked to see if he seemed content, un-stressed and he did so I broached the subject.
Me- "Bear, what went wrong today?"
Bear- "What do you mean?"
Me- (Surprised) "When we were having our Bible study and we asked you to read a scripture? Did you just not want to read?"
Bear- "What are you talking about?"
Me- "You remember when Margie was here, and we were having our Bible study- she asked you to read?" I prompted him.
Bear- (Surprised) "Margie was here today?"
Me- Blank stare
After some more questions I ascertained that Bear had no memory of the morning at all. I told him that it was almost 5:00 pm and he was surprised. I called my friend Tonya Heathco, the President of the National Seizure Disorders Foundation that evening and told her what happened. That was the first time I learned about "Absence Seizures".
According to the Mayo Clinic website
"Absence seizure — also known as petit mal — involves a brief, sudden lapse of consciousness. Absence seizures are more common in children than adults. Someone having an absence seizure may look like he or she is staring into space for a few seconds." -http://www.mayoclinic.com/health/petit-mal-seizure/DS00216
She also told me about Atonic Seizures. According to the information on her website during Atonic Seizures,
"Muscle 'tone' is the muscle’s normal tension. 'Atonic' (a-TON-ik) means 'without tone,' so in an atonic seizure, an epileptic seizure characterized by sudden loss of muscle tone; may cause the head to drop suddenly, objects to fall from the hands, or the legs to lose strength, with falling and potential injury; usually not associated with loss of consciousness. Close muscles suddenly lose strength. The eyelids may droop, the head may nod, and the person may drop things and often falls to the ground. These seizures are also called 'drop attacks' or 'drop seizures.' The person usually remains conscious. Another name for this type of seizure is 'akinetic' (a-kin-ET-ik), which means 'without movement.'" -http://nationalseizuredisordersfoundation.org
That day was an epiphany several months ago. Since then I have begun the long and laborious process of trying to have my son evaluated by a qualified doctor. Tonya explained to me that an Epileptologist is a more appropriate choice for a good evaluation of seizures then a Neurologist. If you Google Epileptologist you will find this definition on Wikipedia.org:
EpileptologistFrom Wikipedia, the free encyclopedia
An epileptologist is a neurologist who specializes in the treatment of epilepsy. Epileptologists are experts in seizures and seizure disorders, anticonvulsants, and special situations involving seizures, such as cases in which all treatment intended to stop seizures has failed and epilepsy (especially poorly controlled epilepsy) in pregnant women. Some epileptologists specialize in treatment of epilepsy in children."
Until recently I had never considered that my Bear could be having seizures. I always thought, like we hear everyday from our allopathic doctors and therapists, "that's just Autism". The thought that I have missed this for all these years just makes a cold chill run down my spine. My stomach just drops down into my feet. If you are a mom you know what I mean.
My son is 16. There are people who have had the answers I need to make my son better. Those people are unfortunately NOT the doctors with whom I have trusted my son's health all these years; or my own for that matter but more about that later. It hurts me deeply that the information we need is not handed to us on the day we get the diagnosis. Why is it so hard to get the diagnosis in the first place? There is a culture of lies surrounding this and a stigma as well and since the new figures have recently come out that 1 in 50 school age kids have Autism it's time that if the doctors and the government and the people who are supposed to have our backs DON'T have our backs then we have to at the very least stick together on this.
It is well known that Autism and Epilepsy can be co-morbid according to the National Autism Association website
"Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more."Talk About Curing Autism Now or TACA Now has this to say about it.
"Seizures and epilepsy are fairly common in childhood. Many children will experience a seizure during childhood and a type of seizure known as a febrile seizure is very common during early childhood. Epilepsy is simply defined are having two seizures without an obvious cause and approximately 1-2% of children are diagnosed with epilepsy."Hippocrates said,
"Let thy food be thy medicine."So with that in mind I went searching for such "medicine".
I am affiliated with Dr. Peter Osborn's Gluten Free Society. When I want to know the science behind a gluten sensitivity and the disease it produces I always turn to his informative articles. Would it surprise you to learn that the exact same diets that parents report as "miracle" for their kids with Autism, are also being hailed by epileptic patients? I don't know why it did, but it sort of surprised me. Especially the reported link to vitamin B deficiency. I have long used B vitamins to control mood swings, panic attacks and depression in my self and my youngest daughter. I first learned about it when I was reading The Kid-Friendly ADHD & Autism Cookbook, Updated and Revised: The Ultimate Guide to the Gluten-Free, Casein-Free Diet by Pamela Compart M.D., & Dana Laake R.D.H. M.S. L.D.N.
Back in 1941 refined grains were "enriched" with iron and b vitamins because it was thought to be contributing to the incidence of Pellegra disease and Beriberi disease, both of which are caused by a B vitamin deficiency.
According to Dr. Osborne's article Gluten, Leaky Brain, and Epilepsy even the "the medications used for epilepsy lead to B-vitamin deficiency... and B-vitamin deficiency can cause neurological disease, contribute to seizures, neuropathy, and so on and so on and so on…" https://peterosborne.infusionsoft.com/go/LBE/BearShir
If you are interested in trying a gluten free diet and think maybe it is too expensive or too difficult or just would like to read about my families experience with eating Gluten and Casein Free and the Paleo Diet then refer back to my earlier post
|From Left top around to the Right and back again... DeSere` (14), Grandma, Jocelynn (9), Victoria (Mom), Alexandra (7), Maxine (4) & Bear (5). Taken in October 2002. (c) All Rights Reserved.|