Wednesday, February 24, 2010

My Son Doesn't Dream

Soon after my son began having seizures, my wife and I did what any doting parent would do; we sought a specialist. Admittedly, it was only after my wife's gentle urgings that I said to go ahead and do it; my distrust of doctors is that strong, especially after dealing with such morons like Dorkski and Novella. And as I mentioned in one of my previous posts (Here), I was pleasantly surprised by this Neurologist. He ordered the works for tests, including genetic testing (no fragile-x, no "autism" genes...color me unsurprised), EEG's and MRI's.

A few days ago, we got the results back. The EEG and MRI's were particularly interesting, to say the least. Apparently, he has been having seizures for some time, but we only just noticed them (believe me...a Grand Mal seizure is hard to miss). The EEG showed him having seizure activity when he's asleep, right before he slips into REM. As the Neuro said, these seizures are preventing his brain from actually getting true rest, and they are also preventing him from dreaming. This, of course, fascinated me to no end, and retrospectively, it made sense. My wife and I continually used to comment on how tired he always looked. The Neuro explained that because of all of this, Nate's brain wasn't growing or developing. Another thing the Neuro asked was if my son had suffered from a brain injury or encephalitis when he was younger, and my wife asked why. He said that what the MRI showed was something consistant with a brain injury of some type. My wife and I never mentioned to him that we believed he was vaccine injured, but when she told him that we believed that my son had developed an encephalitis after an adverse reaction to a vaccine, the doctor nodded his head knowingly.

For right now, the Neuro prescribed Nate Depakote for his seizures. We have to give him at least 10 days to see if it is working. The Neuro was extremely reluctant to do this, as there are absolutely no seizure medicines on the market that are without some pretty severe side effects. We're going to see how it goes, but it doesn't look promising so far (which is nothing against the Neuro...I understand that some people have different reactions to medication, which is something the medical and pharmaceutical industries do not grasp). If this doesn't work, we're looking at the Ketogenic diet; the poor little guy's brain needs fatty acids to help it grow and heal.

Tuesday, February 16, 2010

Uh oh...the Parents are right about something....yet again.

This just in:

Parents are right about yet another Autism treatment. According to this article (Here), the hormone Oxytocin is showing promising results as a treatment for Autism. After several autistic adults were given the spray, they were better able to differentiate social behaviors and facial features.

But parents have been using this for a while now. But we're just terrible, crazy parents for wanting to help our childrens' more severe symptoms.

What else have parents been off their rockers about? GI symptoms are common in Autistic children. Well, that's just crazy! But wait, the AAP has announced that pediatricians should start treating GI symptoms in autistic children because they acknowledge that GI symptoms are common in Autistic children.

So that means that parents of Autistic children who have been treating their children for these conditions with a controlled diet and with Oxytocin spray were right? Whoa!!! I'm shocked! Everyone knows that us curebies are nutters and don't know what we're talking about. And how dare we try to cure our children! How dare we try to stop them from hurting themselves and others! What's wrong with us?

Or maybe, just maybe, these idiot doctors and scientists and wannabes who mock and ridicule these parents should listen to them instead. Such a novel concept, that.

Monday, February 15, 2010

I'm Convinced

The past few years have been difficult for me. Indeed, they have been difficult for anyone with an autistic child, especially one as severe as my son. Many people wonder why I fight and argue the way I do. Sometimes, I even wonder.

Here's the deal. On one side of the fence, you have thousands of parents saying that their child or children had serious reactions to one or several vaccines, and then they lost speech, skills, and milestones. On the other side of the fence, you have people telling these parents that what they experienced didn't really happen. They are asking these parents to lie to themselves, to their families, and to their children. They are asking these people to accept their children as is and not try to cure them. Then, these people run off to their little blogsites or onto message boards and ridicule these parents. It's a game to them. They mockingly blame computers. Or cell phones. Or Star Trek. They make these sweeping claims that we believe in grand conspiracy theories that involve thousands of people from all over the world. But this is no different than their claim that thousands of parents from all over the world are involved in a grand conspiracy to fake their children's vaccine reactions in order to extort money from the NVICP. It's all funny to them, and they refuse to take into account how it feels for these parents to be ridiculed in this way. For these parents, this is a very real and very traumatic experience. This mockery diminishes and trivializes everything these children have gone through. If children like my son could understand it, it would offend them greatly. I can say that my oldest daughter does read these things, and it upsets her to no end how cruel and callous these people are to parents who believe that their children had adverse reactions to a vaccine.

By mocking these parents, you mock their children.

Oh, I know. Kathleen on CAoA will say that I'm making it about me, like she did when I wrote about my son's first word in 5 years. A parent celebrating their child's first word in 5 years is somehow wrong in her book.

It's not about me, you fucking moron; it's about my son.

It's about my son when I struggle to control his diet. But, I should just accept the fact that he smears shit on himself and everything around him because he's just expressing himself, right?

It's about my son when I sleep by the front door and set alarms around the house in order to prevent my son from trying to open the front door in the middle of the night and wander out into the wilderness, possibly getting lost and dying out in the elements. But, I should just accept the fact that he's being curious and wants to explore, right?

It's about my son when I have to take my son to the floor and restrain him for hitting himself, biting himself, or trying to hit his mom or his sisters. But I should just accept that because he's angry and needs an outlet, right?

It's about my son when I or my wife stands out in the yard with him, running after him when he dashes for the street with no concept of the danger to himself. But I should just accept the fact that he just wants to play, right?

It's about my son when I want him to have the fullest and richest life possible. But, I should just accept the fact that after my wife and I are gone, he will likely be forced into a mental institution, drugged into oblivion, and promptly forgotten by the very same people who did this to him.

I'm convinced that these people are the most horrible people in the world. I have no words to describe my disgust. I have no words to describe my contempt for their actions. I'm convinced that these people just barely qualify as human beings, and that they are no longer worthy of my time and effort. I'm convinced that nothing anyone can ever say will convince them that they could be wrong; that they haven't even accepted that possibility. So why should I continue trying? I will no longer spend my time responding to their idiotic hypocrisy.

Oh no, don't take it that I'm stopping the fight. No. Like everything, you have to read the fine print. I'm focusing my efforts elsewhere. I'll still blog when the mood suits me. I'll still comment on something that I find intriguing. But my sarcastic and snarky retorts to these idiots on HuffPo and AoA will no longer be seen. Instead, I will start work on another endeavor that I'll keep quiet about, for now. It will take considerable time and effort on my part, but I think that those that I deem the Quackosphere (tm) will never see it coming.

Some words of advice to these idiots. It isn't a game. It never has been a game. It isn't funny. Your mockery isn't making any friends, and it does absolutely nothing to win people to your cause. In fact, it likely convinces them that the parents of vaccine injured children may just be right. And relying on substandard studies from companies that have been caught repeatedly lying about the safety of their products does absolutely nothing to add any credibility to your cause. And lastly, celebrating about when a study that could show something that opposes your viewpoint is pulled for some reason only shows that you are not interested in the welfare of these children; you're only interested in being right.

One last thing. Kim Wombles made a comment on her site CAoA that I find troubling (Here);
"And somebody explain to me why three of the most prominent male commenters on there have damn near identical stories? And no one over there can clue in on this?"

Is she saying that there is a commentor over there who is signing on with 3 different names? If so, that accusation is hysterical, especially considering how many of the Quackosphere (tm) sign in under several monikers. Is she talking about how our stories are so similar? Is it really hard to believe that these circumstances coincidentally mirror each other? I mean, after all, the Quackosphere (tm) expects us to believe that thousands of adverse reactions to vaccines are coincidental and didn't actually happen. Or, is she saying that we're making all of it up?

I'll allow her the courtesy to clarify this statement, as she is one of the people on the other side of the fence who I have a healthy respect for. If she is talking about me (and I have a feeling she is), then I am highly offended, and she has lost all respect I've had for her. Her posts and comments of late have been very angry, and she is starting to sound like a female version of Orac, which I find very sad. So Kim, if you read this, please take the time to clarify. If you weren't talking about me, then please accept my apologies. If you were, well, we'll talk about that when we come to it.

To Ken Reibel

Since I've gotten my letter returned twice now (I may have the wrong address; I'm unsure), I think it fitting that I place the contents of this letter here. This is legally sufficient to qualify as a Cease and Desist and will be adequate for legal purposes if you continue to contact me. I've also copied all of your continued correspondence to me and given it to my lawyer.

Farewell and good riddance.


January 14, 2010

Ken Reibel:

This Cease and Desist Order is to inform you that your harassing and intimidating actions against me have become unbearable. Your actions have caused distress and embarrassment to me and my family. Such anti-social behavior is completely unacceptable and will not be tolerated in any way, shape or form. This letter is to demand that your continuing involvement in information gathering, harassment, antagonism and intimidation must cease and desist immediately. Should you continue to pursue these activities in violation of this Cease and Desist Order, I will not hesitate to pursue further legal action against you, including, but not limited to, civil action and/or criminal complaints.

Your continued information gathering, harassment, antagonism and intimidation of me includes, but is not limited to, your posting of libelous remarks on a public internet message board about me, including allegations that I am a jihadist. Additionally, you publically noted on this same message board that you knew the location of my place of residence, which I have not publically revealed. You continued to post this information even after I asked politely that you not do so. This will no longer be tolerated.

Note that this letter is admissible as evidence in a court of law and will be used as such if need be in the future.

This Cease and Desist Order demands that you immediately discontinue and do not at any point in the future under any circumstances do the following to me: speak to, contact, pursue, harass, threaten, antagonize, respond to messages by me on internet message boards, telephone (via cellular or landline), instant message, page, fax, email, stalk, or gather information about me. All future correspondence between you and I must cease.

Violation of the above demands will result in prosecution under Texas Penal code 42.07 Harassment and 42.072 Stalking.

Note that this letter does not in any way mean that you will not be allowed to post to the same internet message boards that I post to, just that you will not respond to me or make defamatory comments about me. In deference to the spirit of this letter, I will also refrain from speaking to you, responding to any of your posts, or making defamatory, inflammatory, or intimidating comments toward you.

Craig Willoughby