Thursday, April 11, 2013

Autism and Seizure Service Dogs with Victoria JW Meyers and Terrific Tonya Heathco on Positively Autistic: The Poets Interest with Marilyn and Ryan

Come listen as Terrific Tonya Heathco; Founder and CEO of National Seizure Disorders Foundation and I talk about Autism and Seizure Service Dogs.

Have you ever wondered how an Autism Service Dog  can help someone with Autism?
Have you ever wanted to know more about service Dogs in general?

You will get information about Sunshine4Bear our own facebook page where I chronicle our experience training my son's Autism Service Dog, Sunshine at http://www.facebook.com/ASDog4Bear
You will also hear about the Doggy Dollars Campaign to raise funds for Autism and Seizure Service Dogs for individuals through National Seizure Disorders Foundation.

We will talk about some of the training organizations used as well as general information about how Autism and Seizure Service dogs benefit their handlers.

I can't wait to hear what you think, so be sure to leave me a comment below!


Listen to internet radio with Positively Autistic on Blog Talk Radio


-Peace!
Victoria

Friday, April 5, 2013

WIN! Enter our Coconut Oil Giveway

Tropical Traditions Gold Label Coconut Oil Giveaway Event


Hosted by: BearShirt.org
Prize: 32 oz. jar Tropical Traditions Gold label Coconut Oil
Event dates: 4/15 – 4/22



Gold Label Virgin Coconut Oil - 32 oz.


WIN 1 quart (32 oz) of Gold Label Virgin Coconut Oil!

Tropical Traditions is America’s source for coconut oil. Their Gold Label Virgin Coconut Oil is hand crafted in small batches by family producers, and it is the highest quality coconut oil they offer. You can read more about how virgin coconut oil is different from other coconut oils on their website: What is Virgin Coconut Oil?


Tropical Traditions also carries other varieties of affordable high quality coconut oil. Visit their website to check on current sales, to learn about the many uses of coconut oil, and to read about all the advantages of buying coconut oil online. Since the FDA does not want us to discuss the health benefits of coconut oil on a page where it is being sold or given away, here is the best website to read about the health benefits of coconut oil.


How to Use Coconut oil: There are hundreds of uses for coconut oil! http://www.youtube.com/watch?v=x28yuVzwrMk
We also have several very popular recipe videos on our YouTube channel that you are free to use:http://www.youtube.com/user/TropicalTraditions

"If you order by clicking on any of my links and have never ordered from Tropical Traditions in the past, you will receive a free book on Virgin Coconut Oil, and I will receive a discount coupon for referring you."

Disclaimer: Tropical Traditions provided me with a free sample of this product to review, and I was under no obligation to review it if I so chose.  Nor was I under any obligation to write a positive review or sponsor a product giveaway in return for the free product.

Virgin Coconut Oil, Gold Label - 1 quart

Thursday, April 4, 2013

Caregivers Perspective:Victoria Meyers 04/02 by NSDF Presents | Blog Talk Radio

Dear Reader:
Please join us on NSDF Presents! Tonya Heathco, President of the National Seizure Disorders Foundation and I will be discussing Autism, Seizures, Homeschooling and Diet.

I am very honored to be included as a guest on your show Terrific Tonya Heathco and excited to be able to share our experiences as well! Thank you so much for inviting me!

Caregivers Perspective:Victoria Meyers 04/02 by NSDF Presents | Blog Talk Radio

Listen to internet radio with NSDF Presents on Blog Talk Radio



April is Autism Awareness Month
National Seizure Disorders Foundation has chosen to honor Autism Awareness Month because 30% of those living with Autism will experience seizures of one type or another.
Tonight National Seizure Disorders Foundation invites Victoria Meyers, mother & caregiver to a young man living with autism and seizures, to share her perspective with our listeners. An advocate for autism&seizures,she is also VP Arkansas chapter of National Autism association &creator of the Bearshirt and BearShirt.org which qualifies her to empower our listeners to advocate for autism and seizure disorders in thier local communities. Brew something delicious to drink, settle into your favorite chair, and join NSDF Presents as Victoria shares her perspective on caregiving and advocacy in the area of Autism&Seizures.
We welcome comments and questions. So please feel free to "follow" NSDF Presents, comment in the appropriate area & connect with National Seizure Disorders Foundation on FaceBook and on our website http://nsdf.us

Wednesday, April 3, 2013

Autism Spectrum Disorder and Seizure Disorder of Epilepsy

National Seizure Disorders Foundation logo National Seizure Disorders Foundation continues to honor Autism Awareness month exploring the connection between Autism and seizures. Statistics show 30% of people living with Autism also experience seizures. Because NSDF believes this statistic to be outdated( from 2009), education brought to our readers is crucial. Are you aware children developing Autism can go on to develop the seizure disorder Epilepsy?

Read the facts from TACA and NCBI:

Seizures in Autism Spectrum Disorder (ASD) Seizures are a significant concern and are relatively common in individuals with ASD. In fact seizures are the most prevalent neurological disorder associated with ASD. While 1-2% of children in the general population develop epilepsy, the prevalence of epilepsy in ASD is much higher with estimates varying widely from 5% to 38%. Some individuals with ASD develop seizures in childhood, some at puberty, and some at adulthood. Although the prevalence of seizures by age is not well studied, recent studies suggest the risk of seizure remains high into adulthood. Seizures are associated with increased mortality and morbidity in individuals with ASD and are the leading cause of mortality in adults with ASD. Certain subgroups of individuals with ASD have a higher risk for developing seizures and epilepsy; these subgroups include individuals with comorbid intellectual disabilities, genetic abnormalities and/or brain malformations. Diagnosis of seizures in children with autism spectrum disorder Sometimes it is clear that a person experienced a seizure. However, in children with ASD subtle symptoms of seizures are very difficult to differentiate from abnormal behaviors commonly associated with ASD and in other children with ASD behaviors that appear to be seizure-like are not seizures. For example, it is common for children with ASD to have staring episodes, motor tics and stereotyped movements which are not seizures. It is important to determine if these abnormalities are seizures or another neurological abnormality since they are treated very differently. Thus, in many cases where it is unclear whether the observed behavior is a seizure or not, an extended overnight electroencephalogram should be strongly considered in order to obtain a clear and accurate diagnosis and to capture the suspicious behavior. Read the entire article HERE (1) Autism and Epilepsy: What Has Regression Got to Do with It? The relationship among epilepsy, autism, and regression is a poorly understood and controversial subject. In this brief review, examples of epileptic encephalopathies associated with regression of language and behavior and their overlap with autistic regression are discussed. Epilepsy and autism are both heterogeneous clinical disorders associated with an array of etiologies and pathologies, many of which are common to both groups of disorders. There is a paucity of data on how many children with epilepsy have autism. Recent studies suggest that as many as one third of children with epilepsy are at risk of having an autism spectrum disorder and that this risk is highest in those children who have seizure onset at a younger age(2) There are several epilepsy syndromes in which regression of language, cognition, and behavior may lead to clinical manifestations that overlap with the behavioral syndrome of autism. In addition, for a subgroup of children with autism who have a history of regression in language and social behavior, the role of epilepsy has been a source of controversy, challenging both researchers and clinicians. Furthermore, there are many case reports demonstrating that epilepsy can directly affect cognition and behavior, and there are several epileptic disorders that may cause behavioral and language regression, with a behavioral phenotype similar to autism (3). Despite the importance of the relationship among autism, epilepsy, and regression, the subject remains poorly understood and controversial. Read the entire article HERE National Seizure Disorders Foundation invites you to comment: After reading this information and the articles mention, what is your view of the connection between Autism Spectrum Disorder and seizure disorder/Epilepsy? Your thoughts are important to National Seizure Disorders Foundation and your words matter to millions. Take a moment to speak up in the comment section below. Our mission is to provide the highest quality resources for your empowerment, enlightenment, inspiration and entertainment. tonya-signature1
    References (1)Richard E. Frye, M.D., Ph.D., Arkansas Children’s Hospital Research Institute, Little Rock, AR And TACA Physician Advisory Member http://www.tacanow.org/family-resources/seizures/ (2,3)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783438/
  • Steffenburg S, Gillberg C, Steffenburg U. Psychiatric disorders in children and adolescents with mental retardation and active epilepsy. Arch Neurol. 1996;53:904–912. [PubMed]
  • Clarke DF, Roberts W, Daraksan M, Dupuis A, McCabe J, Wood H, Snead OC, 3rd, Weiss SK. The prevalence of autistic spectrum disorder in children surveyed in a tertiary care epilepsy clinic. Epilepsia. 2005;46:1970–1977. [PubMed]
  • Deonna T, Roulet-Perez E. Cognitive and Behavioral Disorders of Epileptic Origin in Children. London, UK: Mac Keith Press, Cambridge University Press; 2005.
  National-Seizure-Disorders-Foundation-logo.jpg nationalseizuredisordersfoundation.org

Monday, April 1, 2013

Autism and Seizures, Epilepsy as a Co-morbid condition of ASD

Today is April 1st, 2013 - Happy Autism Awareness Month

..."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".
"But he latched on just fine as soon as he was born?" I queried.
"Oh, really?" She smiled. A perfect volley.
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.

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
Me-  Sigh

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."