Review of The Dr. Oz Show "What Causes Autism?"

Preface:

Before we begin this review and debate, let's get my personal view on the issues forefront. I know without a doubt, Jadyne's autism has a genetic factor. My brother has PDD-NOS, my mother's brother spent his childhood bouncing in and out of hospitals for "problem behavior". The list goes down the line. I am very concerned of the genetic component to autism. I worry about my children's children. As far as environmental factors, and more specifically vaccines, I do NOT advocate that parents not vaccinate their children. However, I do find the debate relevant. I find the questions unanswered, the jury still out. Thus, I chose to be cautious vaccinating my last child, JJ. I delayed some of his vaccines in an alternative schedule. I do KNOW autism has a genetic component. I further believe strongly there is an environmental component unidentified as of yet. I do not know if vaccines is that element, but neither do the doctors or scientists! For that reason, the debate needs to continue, the research needs to continue, and parents need to remain informed and cautious with what toxins we introduce to our children's innocent systems. I choose to remain neutral and seek further investigation. My personal feeling is extremism towards either side would be disastrous be it the continuation of blindly vaccinating children without fully understanding the long-term effects of those vaccines or a pandemic of panic leading to a loss of our herd immunity from parents refusing vaccinations. Both will lead to the demise of our future generations. This is a very serious topic!

Staying in the middle isn't the popular approach. I've taken heat from one doctor but even more from other parents. Doctors frown upon their "expertise" being questioned. Some parents have made up their minds that these vaccines ARE the cause, and they discourage anyone vaccinating children. The bottom line is if the fact that I question doctors, that I demand more research, that I choose alternative solutions makes you think I'm a bad mother or don't care about my kids, well personally, I don't give a damn. I don't do this for your approval. Your approval won't make my daughter speak in sentences. Your approval won't ensure my neurotypical (to-date) son doesn't have a child with autism. Your approval or disapproval doesn't change this life for us at all. I do this for them, and as every parent out there, with or without a child with a disability, I do the best job I can with the information I have available.

On Thursday, February 17, 2011, The Dr. Oz Show aired a segment called "What Causes Autism?". The show did an amazing job of putting together a very diverse panel of physicians and scientists and parents. The result was a highly emotionally charged but very useful and informative debate. Even the audience itself was uniquely comprised half of parents of children with autism and half of parents that were concerned their child may have autism.

Click image to enlarge view.

The audience led the most interesting part of the show. These parents aren't rolling over when they seek help and the door slams shut on them. No, these parents all still believe the answer is still out there, and they're fighting with everything they've got to find it. There was a sadness and an anger that resonated with each of the parents' statements. This disorder is damn tough on families! I don't know how it can ever truly be conveyed through words, blogs, videos, or any other form of media. No parent ever wants to hear their child even has strep throat, and those that have to hear their child has a lifelong condition are crushed. The news for autism is presented with even more devastating words, however.

"Your child has a lifelong condition. There is no cure. We don't know what causes it. We don't even really know what it is. It presents differently in each child, so we just call it a spectrum, but that makes it hard to even tell you what to expect. We can't. There is no medicine to help her. Some are being used to treat symptoms but no medicine has been developed for this disorder itself. Your child will live but will not have the ability to interact with the world we live, a permanent emotional vegetative state per se (so the doctors tell you, more on that in a bit!), and while we can't tell you what to expect in your child, we can state that statistics show an overwhelming probability that your relationships will end and you will be financially bankrupt."

I know when Jadyne was diagnosed with epilepsy, there was a different tone with the diagnostic team. They were confident, definitive, and they laid out a whole set of resources and solutions. I left the hospital with a bag filled with pamphlets, brochures, and even charts on epilepsy. Within a week of research, I would know all I needed to with what it was, how to treat it, and felt comfortable that treatment would ensure a normal life for Jadyne. This was not good news for Jadyne but the science was. There were answers. There were medicines, lots of different ones to try even. The insurance companies paid for the treatments. There was even a test to state without doubt this is what she has and this is the TYPE she has. Autism isn't like that. There is no test, there are no medicines, and the literature is minimal. In fact, the list is endless of parents just like me that are out there finding some medium to present this information because even just five years ago it was a struggle to find small answers. The parents are on the front lines, but they must have armor made of kryptonite because they don't go down, no matter how hard the blows are along the way. They stand and fight.

The professionals panel was diverse and very informative. I was excited to see Alison Tepper Singer, the founder of the Autism Science Foundation and mother of Jodi, a now 13 year old girl with autism. (We first met them on "Autism Everyday" when Jodi was eight.) Dr. Bob Sears, author of "The Autism Book" led the debate for the alternative treatment side. The audience cheered him in a few spots of the show. Dr. Ari Brown, spokesperson for the American Academy of Pediatrics, however, was met with let's say a less than welcome response. Dr. Irva Hertz-Picciotto from UC Davis spoke on possible environmental causes of autism. In addition, Dr. Oz had a team of pediatricians present for additional views.

Dr. Hertz-Picciotto's input was unimpressive to me. Yes, autism COULD be caused by mothers living close to the highway, or it COULD be caused by blow-drying our hair or eating bananas or skinny-dipping for all we know. I'm sure if you did a study on millions of things, your results would show an "increased chance" for autism in many brackets. I'm glad she realizes the cause of autism won't be one smoking gun, but her research just didn't have the wow factor I'd hope for with all the funding she receives from the National Institute of Health.

Dr. Ari Brown was definitely in an uncomfortable position. She was met full force with opposition by the emotionally charged audience. Honestly, though, my pity doesn't go far for her. This disorder does not need doctors and associations that have closed their minds to possibilities of the causes. Just because Dr. Wakefield's research has been proven fraudulent does not mean that vaccines still don't attribute to autism. One audience member made a great point by stating that mercury has been extensively researched, but what about aluminum? What about all the other things besides mercury in our vaccines? Dr. Bob Sears offered an alternative to parents of spreading out their child's vaccinations. Dr. Oz stated that he did this for his children. I will admit, I did this for JJ. Instead of him getting his shots on the standard schedule, after consultation with a pediatrician comfortable with alternatives, we chose to delay additional vaccinations until JJ was "out of the water" so to speak with an autism diagnosis.  His doctor was comfortable with this, but warned before school-age we'd have to face the decision if the jury was still out regarding vaccines, but that this would at least give us some more time to "let the science catch up" as he said.  I can't tell you if that's why he doesn't have autism and his sister does, but I can say I'm not sitting here wondering now if the vaccines caused his autism. No, we don't want to lose our herd immunity and not vaccinate any child. However, parents need to know the risks and have the ability to both ensure their child's safety from preventable diseases while not putting them at risk for a lifelong condition.

I don't care what you hear or read. I don't care how the APA or AAP fluffs it up.

THEY CAN NOT (and do not if you listen carefully) SAY WITH ANY GUARANTEE THAT VACCINATIONS DO NOT ATTRIBUTE TO THE RISE IN AUTISM

They can say Dr. Wakefield's research is fraudulent. They can say over 20 studies have stated that vaccines don't cause autism, but as Dr. Sears pointed out, 18 of those studies were conducted by pharmaceutical companies. I was irate at Dr. Brown's response to Dr. Oz's question when he pointed out there are studies and campaigns on newborn HIV and so many other things, so where is the effort into autism?! Her response was the dodging response of any politician. "It's there. We do care about kids." If it's there, why aren't you more specific? Truth is it's not there in any capacity that will have an impact for our kids. It's not financially reasonable for the medical industry to spend money on research for a disorder and then lose money if a cause is found not to be treatable with their medicines and worse yet if the cause if found to BE their medicines. My response to that is simple. I don't care about the medical industry's finances anymore than they care about the financial bankruptcy of all these families with autism. Fix it!

Dr. Bob Sears gives us all hope that some doctors still seek truth. He offers patients alternative vaccination schedules. He encourages a gluten-free/casein-free diet. I'd take any of my kids to him with confidence! I love doctors that say, "We just don't know." How about it? We just don't know. That's the truth. The truth is not a doctor trying to strong-arm a parent into a decision by stating results of studies that suit their viewpoint. The jury is still out. That's the truth. So while we continue research, let's err on the side of caution.

Alison Tepper Singer was my favorite part of the show. I can't say I disagree with one thing she said. She respects the science, studies the science, works for new science, and she also lives this life every single day. She has a unique position of seeing both sides of the debate with a clarity we could all only dream. I feel confident her research will lead to answers. I urge anyone to donate to the Autism Research Foundation.

Autism Speaks declined to go on the show because they wanted to talk about insurance reform and treatments for those that have autism. I will say, while I am tremendously grateful for Autism Speaks, I found this disturbing. I'd have to agree with Dr. Oz, "How do we get there unless we start here?" Autism Speaks's position reminded me of Jadyne's pediatrician when her tests results first started coming back, "Don't worry about why, just worry about treatment." If I had followed his advice, she still wouldn't have a diagnosis. Please understand the tremendous positive impact Autism Speaks has day in and day out. I in no way am bashing this amazing organization or their focus. However, I didn't find their response appropriate in this one instance. I believe Autism Speaks is a priceless resource for the Autism Community, and I would have liked to hear their part in this debate.

All in all, thank you Dr. Oz for leading this very balanced debate. The more exposure we have to these topics, the more people will care, the more people will act.

Click here to watch Part 1: Three families share their stories and their struggles.

Click here to watch Part 2: Are vaccines to blame?

Click here to watch Part 3: Pediatricians discuss where they stand on vaccines.

Click here to watch Part 4: Dr. Oz reveals what he did for his own children.

Click here to watch Part 5: The role of environmental risk factors.

Click here to watch Part 6: Older mothers and autism – is there a link?

Click here to watch Part 7: Warning signs every parent should know.

(All links will open a new window on http://www.doctoroz.com)

Our Journey with Epilepsy

One of Jadyne's 24hr+ EEGs over the years. She's a trooper.

I know when I first heard the doctors tell me my daughter had epilepsy I thought of a child flailing uncontrollably possibly dying from swallowing her tongue. I'm not quite sure where these myths started, but they simply aren't true.

Jadyne's first seizure was at seven months old. There are many types of seizures, and her first one was an absence seizure. During an absence seizure, the child just stares right through you. They are unresponsive to any stimulation. It is quite scary. I rushed her to the ER, but the ER told me she just had a night terror. A night terror? She's seven months old? What has she possibly experienced in her life so frightening it would even manifest itself as a night terror. From having two other children already, I knew night terrors were more of a toddler stage occurrence. Therefore, I followed-up with her pediatrician. He had performed a neurology residency during his education and knew immediately from the symptoms we described this was indeed an absence seizure. No one in my family had seizures. This frightened me. Shouldn't we do some type of work-up? His answer was that everyone is entitled to one seizure in their lifetime, that it was probably just stimulated by lights or some other type of over-stimulation, and if she had another, then we'd do a work-up. This didn't set right with me, considering she was getting ready for bed when the seizure occurred. The lights were dimmed. The house was quiet. Still I was too new into this lifestyle of a parent of a disabled child to realize I could question and even fight the doctors when needed for her care.

What became the focus soon after as Jadyne turned a year old is that she has missed so many milestones. The formal testing began, and all the tests showed "something" was wrong, but nothing showed exactly what. Therefore, therapy began when she was 14 mos old. Jadyne did all kinds of "quirky" things. She would flap her fingers (later to be discovered to be a stereotypical autistic behavior of atypical handflapping), bang her head, pull hear hair, and more (again all stereotypical autistic behaviors). I had noticed she began to flutter her eyes and bob her head a bit once in awhile, but I just thought this was another "quirk" of hers. Luckily, it was one of her therapists, when she was 2 1/2 that said, "You know, I work with another little boy who has seizures and his seizures look very similar to that eye fluttering she's doing."

Soon after we were at Children's Hospital of Pittsburgh; Jadyne was admitted. They kept her for three days and ran every test possible within those three days. The developmental team and neurology team worked together. The conclusion was Jadyne was having so many seizures in a day that it was impossible to count. The possibility lied that her developmental issues were related to the seizures, and the developmental team would continue to rule out possible diagnoses as time went on. The chromosome for autism and epilepsy are closely related, so a single depletion could cause both in theory. As we left, it was confirmed Jadyne had a Generalized Seizure Disorder, also known as Epilepsy. The doctor's put her on Topamax, but she didn't get better, she got worse. For a year the doctor's upped the dosage until finally giving up that this medication, although effective for many and carrying very low side effects, just was not going to be effective for Jadyne.

Currently Jadyne is diagnosed with Generalized Nonconvulsive Epilepsy. We do suspect due to the progression of the manifestation of her seizures and the increase in frequency of her seizures over the years that she will eventually have Generalized Convulsive Epilepsy, as she has already begun to present with some of the criteria for that diagnosis. Fortunately, we were able to find a wonderful pediatric neurologist, Maggi Jaynes, out of WVU Pediatric Neurology. She took Jadyne off the Topamax, knowing immediately that drug would never have proven effective for Jadyne's type of epilepsy and put her on what has proven to be a miracle drug for her, Lamictal. You'll notice if you click that link, the generic form is lamotrogine, which of course, Jadyne was first put on. It worked for about a year. However, she grew a tolerance. The drug must be titrated very slowly due to a very rare side effect. Thus, once the generic form no longer worked, we had to completely retitrate her to the brand necessary form. It takes approximately six months to get to a workable dose. However, Jadyne always showed great results much sooner. She's tolerated the drug very well. Approximately every 6-9 months she'll begin to have seizure breakthroughs, and we'll up the dosage. However, we're still far below the maximum dosage per kilo. I can't say enough about this drug. Thank you, GlaxoSmithKline.

Jadyne still has seizures. She's unaware that she has them. Most are only a few seconds long, just an eye flutter and a head bop. As her tolerance to the medication ensues, she begins to have drop attacks. These have caused injuries to her face and body, and they are what concern us. She will most likely never be seizure free. However, as long as we can keep the seizures to a minimum through miracle medications like Lamictal, she can lead a normal life. Unfortunately not enough of the public is trained in epilepsy that works with children. The term epilepsy is often frightening to many. Jadyne has been needlessly pulled out of class many many times over a few second seizure. There is not a reason a child with epilepsy can't lead a normal life like any other kid.

The term Lennox-Gastaut Syndrome has been thrown around over the years with Jadyne's specialists. However, it can only be diagnosed by a specific spike and wave pattern on an EEG, and it isn't worth taking her off her medication to see if the pattern exists because treatment for that disorder is the same as the treatment regiment she is already using. Regardless of whether she has that disorder or not, her seizures have progressed in manifestation and frequency over the years. This isn't over yet. It isn't unreasonable to believe eventually Jadyne's seizures will manifest into Grand Mal Seizures. In fact there is no difference on an EEG from a Grand Mal Seizure to any other of the Generalized Seizures she has. The only difference is the manifestation in what the body does during the seizure. Our hope is that through the medication and advancement of research and improvement of medications, we can continue to prevent these seizures from occurring for her. So far, we have been very fortunate to find an amazing specialist and a miracle medication, and Jadyne leads a life like any other kid without epilepsy. =)

What is Autism?

Best video I've ever seen describing a life with an autistic child. "Autism Everyday" created by Autism Speaks

http://www.veoh.com/browse/videos/category/educational/watch/e133765ejW4nXnh

The simplest answer is that autism is a neurological condition that affects social, communication, and behavioral areas with stereotypical behaviors presenting. However, no one child with autism is the same as another. Therefore, I can only speak for what autism is like for Jadyne.

For Jadyne, the symptoms were clear early. At 8 weeks old, she still was not tracking objects with her eyes. Worse yet, her pupils were continuously dilated. My first concern was she was blind. Preliminary tests would rule this out but not explain this anomaly in her development. This continued for years, milestone after milestone not being met on time or not at all, test after test proving the milestone had not been met but without explanation as to why.

Probably the most notable and memorable of all this testing was pathology and audiology. Formal testing done at Children's Hospital of Columbus, OH showed Jadyne could indeed hear, but she had no level of receptive or expressive language. I asked both the specialist and her pediatrician how this was possible. How can she hear but not understand nor express, not even repeat, not gesture, nothing? It was clear to me, even then, even in my complete lack of understanding at that time of neurological processes, her brain simply wasn't processing what was entering it through her ears. Still yet, I was faced by impasse after impasse from doctors with the ever wonderful statement "We don't know. Let's just get her into therapy. Don't worry about a diagnosis. Just worry about treatment."

In treatment, the therapists begged for a diagnosis, while the doctors just wanted therapy. I was caught in the middle of a debate, unknown to me, had been ongoing for many many years. I fought to get Jadyne this elusive diagnosis, as the therapists were quite convincing that the earlier Jadyne was diagnosed, the higher her potential would be placed. Finally, after almost five years, Jadyne received her Autism Spectrum Diagnosis (first just PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified), and that launched us into the ASD community. Just a month later the American Pediatric Association announced screening would be mandatory for all children at the ages of one and two years old for............autism.

For Jadyne, the biggest challenge has been communication. She does present with stereotypical autistic behaviors such as hand-flapping, self-injury (hers manifesting in the form of pulling her hair, biting her hand, or banging her head), and both vocal and tactile "stimming". However, these stereotypical behaviors present most frequently when she is frustrated from her inability to communicate her thoughts, wants, and needs. She has a fully functioning brain for all the thought processes we have, thinks in complete sentences (proven by use of dynamic assistive communication devices such as the Dynavox), and yet somehow the words get stuck between thought and speech.

In essence, Dr. A. Jean Ayres, Ph.D., OTR, may have described it better than any of us ever can: "a traffic jam of the senses in the brain." Just as if you were blind, the rest of your senses would become hypersensitive, in autism, you are not blind, but your brain doesn't know that. The senses become either hyper or hyposensitive, a varying combination of the two. The DSM-IV describes the criteria for an Autism Diagnosis here.

For Jadyne, she can hear and now process what she hears, but she can't speak even on the same level as her three year old brother, and she is 7 1/2, although she is now considered verbal, however once was considered non-verbal. This in and of itself is progress, but as in everything, in Jadyne's time. She craves visual stimulation, such as a disco ball lit up in a dark room. She can't feel touch as much, although much more than before (once upon a time she couldn't even feel pain at all), and so she craves tactile stimulation through means of water play, massage therapy, and joint compression. She has never turned down any food, thus I must assume, without her words, she cannot taste or smell. However, that little girl LOVES to eat.

Communication remains our focus. Jadyne is blasted with a speech therapy technique of "waiting" daily: unless she makes at least an approximation of the word, she cannot have what she wants. This may seem cruel to those that don't live this life, but it has been indeed the only thing that has forced her into progress. She can sign, she can approximate, and for some things she can talk, but an absence of communication has become unacceptable. Everyday she fights to get her words out, and everyday, she gets just a little more accessible.

For more information on the sensory aspect of autism, visit:

http://www.incrediblehorizons.com/sensory-integration.htm