AGE OF AUTISM

The Trouble with the ANTI “Anti-Vaccine” Movement: How They Hijack the Issue; Distort the Facts; and Totally Miss the Point

By Julie Obradovic

1. They believe there is an anti-vaccine movement.

This may surprise a lot of people, but there actually isn't an "anti-vaccine movement”. Although there are definitely people who believe no vaccine is a good vaccine, the controversy has never been solely about whether or not vaccines are good or bad; it's been about whether or not they are being used responsibly and have been properly investigated for their role in chronic health conditions.

The more appropriate term to describe people raising this important question would be consumer safety advocates, seeking informed consent, more research, product liability, and policy reform.

Only a few possibilities exist to explain why those who insist on using the "anti-vaccine" label anyway continue to do so: they erroneously assume anyone who questions a product's safety is automatically against it; they believe vaccines already are being used as responsibly as they possibly can be and have been properly investigated; or they choose to use a red herring label like "anti-vaccine" to manipulate people. 

2. Anyone who disagrees with them is an idiot.

If the first line of attack doesn't work it will almost always be followed by an insult. Not only are people who disagree portrayed as dangerous lunatics who want to see the world explode in infectious disease, supposedly they are also "flat-earthers" who can't accept the world is round. Certain journalists have gone so far as to suggest it's no wonder their children have problems.

Such commentary is breathtaking in its insensitivity, entirely unnecessary, and most troublesome once again, not true. Even the CDC has recognized for years, most recently in a study on Hepatitis B uptake, that the most common demographic of a person who questions vaccine safety or refuses them is a highly educated mother with a master's degree.

When faced with this unpleasant fact, anti “anti-vaxxers” are left with little place to go. Some have started calling these parents “superstitious”, “defenders of pseudo-science”, or “conspiracy theorist” instead.

3. They blame Dr. Wakefield for everything.

Dr. Wakefield has now become the scapegoat for the whole controversy. Supposedly this man and his team of researchers, who had the audacity to suggest there might be a problem with the MMR that warranted further study, is single-handedly responsible for the plummeting vaccine uptake throughout the country.

Do YOU Have Autism? Take This Survey to Find Out!

By Julie Obradovic

The LA Times in their series on Autism last week referenced a British study that appeared to have found 1% of adults with the disorder, the equivalent to the rate among children right now, as a way to convince the public Autism really isn't an epidemic after all. Millions of adults with the disorder have been with us forever they tell us, unfortunately either misdiagnosed, in prison, or worse. The quest to find them has begun, and in Britain, they've already started.

I forgot about that study from 2007 and decided to go back today and look at what it found and how. I remembered it being pretty ridiculous, and sure enough, I was right. 

Logic would dictate that if you were truly screening the adult population for Autism, you would subject them to the same DSM criteria children are, and that you would investigate as to whether or not they had those symptoms as children. Let's compare apples to apples, shall we? But no. That's not really what happened in this study. Instead, it starts with a survey, one that the adult answers themselves. (Think about that for a second.) Naturally, I decided to take it to see if I too would be flagged with possible Autism. 

Here is the actual survey, called the AQ20, and here are my answers. (It's quite obvious the survey is strictly trying to identify people with Asperger's Syndrome. Muddying the waters to say 1% of adults with Asperger's is the same as 1% of children with Asperger's and Classic Autism is pretty neat trick, eh? And for what it's worth, over 5,000 of the 7,000 plus interviewees in this study qualified as possibly being Autistic based on it, making them initially eligible to move on to phase two. Seriously.) 

Go ahead! Try it! Maybe you're Autistic too.

1. I prefer to do things over and over the same way. Yes. I like my laundry folded the same way all the time.

2. I often notice small sounds when others do not. Yes. Since being a mother, I can hear a whisper down the hall at midnight.

3. Other people often tell me what I've said is impolite, even though I think it is. Yes. When I talk about Autism with very little patience and creative curse words, this is usually the case.

4. I am fascinated by dates. Yes. I live my life by the calendar, no doubt.

5. I find social situations easy. Not always. Depends on the situation.

6. I tend to notice the details others do not. Yes. I was raised to. 

7. I would rather go to a party than a library. Depends on the party. 

8. I find myself drawn more strongly to people than things. Depends on the things. Depends on the people.

9. When I talk, it isn't always easy for others to get a word in edgeways. Often, yes. I'm an Irish-Catholic woman from the midwest. This is surprising?

10. When I'm reading a story, I find it difficult to work out the characters intentions. Depends on the writer. Some people are terrible story tellers.

11. I particularly enjoy reading fiction. Not lately.

12. I find it easy to make new friends. Yes, but harder as I've gotten older. 

13. I know how to tell if someone listening to me is getting bored. Yes. This happens a lot with Autism talk.

14. I find it easy to do more than one thing at once. Easy? No. Can I? Yes.

15. When I talk on the phone, I'm not sure when it's my turn to speak. Cell phone? All the time. The delay kills me.

16. I find it easy to work out what someone is thinking or feeling just by looking at their face. Yes.

17. I like to collect information about categories of things (types of cars, etc.). Yes. I collect coffee mugs. And I really like coffee. Read a book about Starbucks.

18. I like to plan any activities I participate in carefully. Yes. I'm a control freak. Ask anyone.

19. I enjoy social occasions. Is my family there?

20. I am not very good at remembering people's date of birth. Thank goodness for Face Book.

Although this is sarcastic, the truth is that even without sarcasm, there were enough positive answers to move me to phase two. You? 

Julie Obradovic is a Contributing Editor to Age of Autism.

Stop. Sit. Play. Enjoy.

By Julie Obradovic

A few weeks ago I attended the Freshman parent night for my eldest. He will be attending high school next year, and it was our opportunity to check out the school. 

Thirteen years have gone by in a flash. It's been hard not to stop and stare at him just a little bit longer lately and think about how quickly he has grown up right before my eyes. My thoughts venture from t-ball games, piano lessons, soccer tournaments, Disney World, and so much more. It makes me teary, even though I am so excited about him moving on to the next stage of his life. As the mom of a child who has had a completely different experience than him, I, perhaps more so than many moms, do not take one ounce of his blessed abilities for granted. He's happy, kind, respectful, compassionate, smart, talented and has lots of really nice friends. The future will be whatever he wants it to be. It doesn't get any better than that.

My youngest is growing up just as quickly, if not more so. Seven going on seventeen, she has been like a tween-ager for the past three years. I don't know if that's how it is for all youngest children, but I just can't keep her from seeming much older than she actually is. She too is a blessed child, well-liked, brilliant, beautiful, athletic, and a real fireball. Passion and compassion run deep in her DNA. I don't take an ounce of her abilities for granted either.

It's painful to admit, but when I look at my middle child, who was not as lucky as her siblings, I don't have the same nostalgia for her youth as I do my others, or the same excitement for her future. The truth is, as I reflect on the last ten years of her life, my memories are overwhelmingly filled with anxiety, guilt, and pain. And as I look forward to the next ten, I am instantly shackled with sadness, fear, and worry. How horrible.

Strange then when I look through the photo albums of our family I see her adorable face beaming back at me. From them, no one could ever tell anything was ever wrong. She's smiling, happy, beautiful, and full of light. She's in Disney World, playing t-ball, swimming, making silly faces, ripping open birthday presents, and wrestling with her dad, exactly like her brother and sister. And yet, she was not like her brother and sister. 

Was she?

She'll Be a Good Worker

By Julie Obradovic

"She'll be a good worker," she said with a smile, not meaning to be insensitive in the slightest. I could tell she thought this was a good thing. "She'll be a really good worker."

She'll be a good worker?

My eyes fell to the table, the only place I could look, fixated on the phone in front of me. My husband had participated by phone. He had just hung up a minute before. Save me. Please save me. I sent telepathic thoughts through it to him. I've kept it together this long. I almost made it. Please, God. Not again. Not every year. Matt? Can you hear me? Save me.

He could not.

The typing on the lap top continued quietly, the shuffling of papers all around. I'm certain they were all still talking, although I could hear nothing. 

She'll be a good worker? 

Tears swelled in my eyes, my heart stuck in my throat. If I blinked, there would be no hiding it, so I didn't. I just stared at my phone, and then eventually pressed the weather app in the hopes it would distract me. For a moment it did. And then, a question.

"So I wanted to ask you something," the new speech therapist asked strangely. Instinctively, I knew what it was going to be. She was new to our case, new to me. This happens every time.

She thumbed through her case history and came upon the highlighted sentence. Pondering it, she looked at it, looked at me, and then looked back at it. I was right.

"It says here that Eve was evaluated in 2007," she paused now looking at me again, "and that they consider her 95% recovered from Autism?"

"Yes," I looked her dead in the eyes with a suggestion of "...and your point is?" I have gone from intense pain to intense pain-in-the-ass in ten seconds.

"I don't understand," she responded flatly.

"I don't understand what you don't understand," I carefully answered back. It was still hard to tell if she was being sincere or not. Knowing how defensive I was feeling, I chose to give her the benefit of the doubt.

"Well, explain to me what that means. Recover from Autism?" She was actually sincere. 

The More Things Change...

By Julie Obradovic

A few Saturdays ago was my twentieth high school reunion. I had a ton of things to do that day, not the least of which was running three different children to three different activities before noon. After that was over, there were errands to run, and of course, time needed to get ready. The day was planned out carefully in advance, my parents being nice enough to help out.

My dad came into the house with his huge, "hell-OOOO" which sounds like "yell-OWWWW" and a smile. He's a busy man, my father, and often times when you are talking to him you get the feeling there's a mental clock ticking letting him know your time is almost up. You have to talk fast. I could tell from his demeanor this was one of those times. There was a checklist of items he needed to make sure he communicated before he would be out the door. After getting through the first few items or so, he remembered something not on the list. This has happened about, oh, ten times.

"Oh, yeah, so I wanted to tell you," he remembered suddenly. "I wore that pin the other day. I know I tell you this all the time, but man, any time I wear that pin, at least five people start a conversation with me about it. I ended up talking to a bunch of nice people, several whom want your web site and email address. Would you mind writing that down for me again? And you know," he continued, implying somehow this was my fault, "you should really have a card."

My father talks with easily thousands of people a year and has for over thirty years. The pin he is referring to is a blue Autism Speaks puzzle piece he puts on his suit lapel. No matter how many times I have told him I don't have a web site but that I write for Age of Autism, he doesn't remember. And no matter how many times I explain to him that I don't support the blue puzzle piece organization, he doesn't pay attention. He doesn't support them either, he says when I bust him,"but it always starts a conversation." Okay, whatever. Anyway, dad.

I wrote down the information and listened to him describe the same conversation he has had multiple times. I know because many of these people email me or friend me on facebook. This one's grandchild has Autism, and they want to make sure he's taken care of. This one was a teacher for forty years and never saw sick kids like her grandchildren. This one is a young couple that is trying to buy a house but just got the bad news and don't want one by a lake anymore. Regardless, it always ends the same. "You should really talk to my daughter..." And so they do.

We spoke briefly and soon he was back in check with his internal clock. Dad gave me a kiss, told me how proud he is of me, and yelled out a collective good bye that reverberated through the house so all the kids could hear. I love my dad dearly.

The day continued as planned, and by 5:30, I was ready to head out. One of my best friends picked me up right on time. We snapped photos like we were going to homecoming and giggled in excitement as we tore out of the driveway. We pulled up in time to help our other friend, the coordinator, finish up with the last minute touches. Shortly afterwards, our classmates began to come in. (All names have been changed.)

Hi, Jayson! How are you? It's so good to see you! Really? That's fantastic! Gosh, you look the same! Oh, thanks! No, really, thanks! You, too!

And so it went for the first half hour or so. It was genuinely good to see everyone doing so well. I had some wine and made my way around the room. There's Mike! Oh, gosh, I wonder what's up with him? 

Hi, Mike! And then it started.

Mike got cancer last year. He had surgery and appears to be doing well. 

No, they have no idea why it happened, but life is good and my two children are growing up fast. You have a child with special needs right, Julie? I thought I heard about that. Did you use Early Intervention Services? What did you think of them?...Well, no, they seem okay. One of mine has a pretty bad speech delay, and the other, well, he has this thing about insisting on walking on his toes. He has sensory, sensory, sensory something...Sensory Processing Disorder?...Yes! Sensory Processing Disorder, but they think his toe walking is just a habit now, not a real problem...Mike, it's a problem. You need to trust me on this...Oh, no, Julie, I'm making it sound worse than it is. It's fine....No, Mike, it's not fine.

The Terrible Logic of Supposedly Smart People

By Julie Obradovic

More and more lately I have read articles and editorials that call for stricter vaccine mandates using the same analogies. It's almost as if someone issued talking points to the all-vaccines-are-always-good-for-everyone-at-all-times-no-exceptions brigade and unleashed them on the media. Maybe you have seen them too.

There's the car seat analogy. We have never done a double blind placebo study on car seats, and yet, we know they are safe and save lives. This is why we mandate them and why we should mandate vaccines too. 

There's the smoking analogy. People can no longer smoke in public because it endangers the lives of others, ergo vaccines should be mandated too.

And there's the drinking and driving analogy. For similar reasons as smoking, we have strict laws about drinking and then driving, and we have very serious consequences (like jail time) for those who disobey them. Ergo again, vaccines should be mandated (and if not accepted, punishable by jail time).

Interestingly, I have seen all three of these analogies touted by people who boast their Harvard education. Harvard, we all know, is reserved for the elite, the best of the best; therefore, the label implies, if a Harvard graduate says it, it must have merit. 

To be sure, I agree Harvard is an impressive institution. You do have to be pretty intelligent to go there, of that I have no doubt. But it is precisely for that reason that I am left wondering how these supposedly smart people do not recognize the error of their logic. Contrary to what they would like to believe, car seat mandates, public smoking bans, and drinking and driving laws are not analogous with vaccine mandates. Here's why.

When crafting legislation a law may fit into one of the following categories: 

1. A law that forces an individual to take action to protect themselves or their children that has no impact on someone else and that has no potential to harm the individual by doing it. 

An example of this would be mandating the use of motorcycle helmets, seat belts, or car seats. (A person may not like being forced to wear a helmet or use a seat belt or car seat, but no physical harm will come to them from doing so.) 

2. A law that forces an individual to protect themselves or their children that could have an impact on someone else, but still has no potential to harm the individual by doing it. 

An example of this would be establishing a minimum driving age. (A person may not like being forced to wait until they are 16 to be able to legally drive, but no physical harm will come to them from not driving until then, and more so, no physical harm can come to society by the delay. In fact, it likely prevents harm to the driver and others given the immaturity and lack of experience of a 16 year old.)

3. A law that prevents an individual from taking action that could harm themselves or their children that has no impact on someone else and that has no potential to harm the individual by not doing the activity.

The Environment of Medical Intervention

By Julie Obradovic

As we learned last week, a new study released by the NIMH has determined that the environment plays a larger role than genetics in Autism than previously thought. Combined with a study released the same day that shows a correlation between anti-depressant usage among pregnant women and Autism diagnoses in their children, it's been a breath of fresh air. 

That said, I can't exhale just yet.

The environment as a cause of Autism, although a welcome relief to a genetic one, leaves me nervous. Why? It is completely subject to interpretation, and I believe, leaves the door open to literally thousands, if not an infinite amount of possibilities of causation. We've already seen some examples of how researchers interpret it, and frankly, it's been more often than not less than helpful research.

There's the angle of the actual environment, like the climate, being the problem. One study showed us that Autism rates are higher where it rains more.

There's the angle of the environment of parental stimulation, like how a child is interacted with, being the problem. One study suggested parents who talk to their children less will more likely have a child with Autism.  

Admittedly more helpful, there's the angle of the environment of pollution being the problem. One study showed Autism rates are higher near coal burning plants, and another showed living close to freeways having the same effect.

And then there's been the angle of the environment of contact, like what a child is touching in their own home. One study suggested pet shampoo may be implicated in Autism, and many speculate it could even be their flame retardant pajamas or household pesticides. Likewise, multiple studies have shown lead, which is unfortunately found in many of our children's toys in alarming amounts, can also lower IQ and cause developmental problems.

I suppose in the bigger picture, these do point us in a helpful direction: environmental toxins are a problem. But again, given there are an infinite amount of combinations of them, I'm concerned this area may quickly become another vast wasteland of time, money, and effort for our children. For me, it's imperative we define exactly what environmental research means moving forward, as well as how it needs to be prioritized, in order to most effectively and immediately help our kids. The good news? Our most promising research fits neatly under one umbrella.

AAP Calls For Better Chemical Risk Management. Now That's Funny.

 
By Julie Obradovic

In a slap yourself on the forehead, jaw-dropping, eye-popping, breath-taking, head-shaking, make-you-laugh-in-disgust hypocritical move, the American Academy of Pediatrics has issued a press release (HERE) accusing the U.S. of being too lax with managing and identifying the dangers of hazardous chemicals for children. 

Yes. The AAP. 

The same organization that I blogged about (HERE) that shared an internal email (HERE) among their leadership about how to handle the fact that they didn't realize there was more mercury being injected into kids than they thought (their words) (or how it manifested as poisoning, or how much of it actually caused poisoning, or how much of it could even be called "safe"), and rather than screaming from the roof-tops for an urgent recall and assessment of damage to the children overly exposed because of their oversight, decided to go along with the PHS (Public Health Service) and quietly try to get themselves out of the mess without hurting themselves, their doctors, or the vaccination program.

Yes. Them. That AAP. The people who put themselves and the vaccination program at more of a priority than the very children they serve. First, they threw them under the bus. Then they left them there. Then they failed to call an ambulance. Then they blamed more and more parents for not teaching their kids how to cross the street. And now they want the US Government to put up better road signs.

Are you kidding me?

If I weren't so disgusted by this hypocrisy, I would be thrilled. It is a good thing after all, that they find the toxic world in which are children are being raised a problem. It is a good thing after all, that they would like those with the authority to do something about it to do something. I suppose I should applaud.

But I can't. Because I think it takes a hell of a lot of nerve to accuse the US Government of failing to protect children from hazardous chemicals when they haven't even bothered yet to do the same thing themselves. (Chemicals, mind you, that they INJECT into children every day.) And given their track record of how they handled the situation when they had the opportunity to, they ought to be ashamed. 

Now, don't get me wrong; I don't have the US government's back on this either. They failed and continue to fail our children equally. But perhaps the AAP would be better served by first assessing their own failure to protect our kids and take their own advice about how to do that. A bite of humble pie might serve them well.

For example, when they suggest to the US Government...

"The regulation of chemicals must be based on evidence, but decisions to ban chemicals should be based on reasonable levels of concern rather than demonstrated harm."... I'm curious. Why doesn't that apply to Thimerosal? Because to date, no one has banned this chemical for children or pregnant women, and there's a very reasonable level of concern that they should. See, it's poison. It's a neurotoxin. And no amount of it has ever been found safe. And the studies you site to try and tell us it is; they're all over the place. Some say it's good. Some say it's bad. Some say it makes you smart. Some imply it prevents Autism. (And now, some were done by a man indicted by the US Department of Justice for fraud (HERE.) Go ahead anyone reading this and look for yourselves (HERE). They're ridiculous! And yet, you still inject it into kids every day in combination with aluminum, the one thing it's not supposed to be combined with HERE (HERE). 

Furthermore, AAP, not only have you not banned it based on a reasonable level of concern, you have actively fought parents who have tried! You have thwarted every effort on our behalf to do so! You're PREVENTING a mercury-based neurotoxin from being banned! Good God, AAP! Do you not see a problem here?

And when you suggest this to the US Government...

"Any testing of chemicals should include the impact on women and children,  including potential effects on reproduction and development".... I'm also curious. Any chance you want to do those studies on Thimerosal? With BIOLOGICAL tests, not epidemiological ones that look backwards at selective populations and are subject to statistical manipulation?

And when you say,

"Chemicals should meet safety standards similar to those met by pharmaceuticals or pesticide residues on food."... Do you realize there is no safety standard for Thimerosal? That the FDA has never provided one, and that you have never demanded of them that they do?

And do you really mean it when you say,

Paging Dr. Ruth: Autism & Mercury More than a Decade Ago

By Julie Obradovic

Recent events surrounding the US indictment of researcher Poul Thorsen inspired me to revisit the time when he became involved in the effort to examine (and it appears, exonerate) the potential role of vaccines in Autism. An easy place to do so, and one I encourage everyone to visit, is the Put Children First website. It clearly documents the events that took place leading us to where we are today.

While navigating the site, I came across an old email written by  Dr. Ruth Etzel that  I had forgotten about.  (See pdf of email here) It seems more appropriate than ever to share it now, as it accurately and eerily predicts what has happened to the public's confidence in the vaccine program. But to put it in the proper context, let's remind everybody about what was happening right before it was shared. 

The FDA issued a directive called the FDA Modernization Act of 1997 to assess all mercury in food and drugs. This included vaccines, and in December of 1998 and April of 1999, vaccine manufacturers had no choice but to respond to their request for more information. Panic set in as it became obvious there was a serious oversight problem, (even though Merck knew back in 1991 there was a problem) and behind the scenes members of the different agencies of the Department of Health and Human Services, such as the FDA and CDC, joined forces with organizations like the AAP and Public Heath Service to come up with a plan. Collectively, however, they couldn't agree. To begin with, there were no specific guidelines for the safety for ethyl mercury (the kind used in vaccines). And as for coordinating a message to calm the American public? Well, there wasn't much agreement there either. 

Think about it. They had to admit they had no idea what the definition of safety was for injected ethyl mercury exposure in children; that they had no idea how much of it was going into children anyway; that they had no idea what health consequences their oversight could have caused; and they had to find a way to still save the immunization program (as if any of them had any right to be in charge of it anymore anyway). Not exactly an easy task. And like I said, there was a lot of debate over how to do it.

As such, the AAP grew impatient, and on July 7, 1999 at 4:15 PM, a summer Friday afternoon when they hoped no one would be watching television or paying attention, a joint health statement between themselves and the Public Health Service was issued. In confusing and calming language that tried to be reassuring, they admitted to a potential problem that no one should worry about. Mercury was bad, but it wasn't. They forgot to assess the health risk, but it was fine. They would take precaution but not make a recall. You should be concerned, but not really. It was a mixed message to say the least, and not everyone behind the scenes thought it was a good idea. One of them was a doctor named Dr. Ruth Etzel.

On July 2, 1999 at 10:36 AM, she wrote these words to her colleagues:

"The Committee on Environmental Health and the Committee on Infectious Diseases may want to look at the way Johnson and Johnson handled the poisoned Tylenol affair in 1982. It followed three basic rules:

1. act quickly to recall the affected product

2. be open with consumers about what went wrong

3. show contrition

Seventeen years ago, when an extortionist tried to wring money out of Johnson & Johnson by lacing capsules of Tylenol with cyanide, 7 people died. While the government was still considering what to do (sound familiar?), and before the media had time to put the company on the defensive, Johnson & Johnson recalled all Tylenol products. That cost about $100-million and it lost short term sales. But it emerged from the episode with consumer confidence at a higher level than ever, and quickly regained its leadership of the painkiller market.

The AAP should be dedicated to promptly providing truthful information about this situation to pediatricians. We must follow the three basic rules:

The Bruising Reality of Autism and Lack of Preparedness and Medical Knowledge

Managing Editor's Note: We learned that Billy is back in the hospital, hobbled by his agonizing GI pain. Share your own story in the comments please. Or send us your submission to KimStagliano@gmail.com for review.

By Julie Obradovic

Over the last six years I have been privileged to meet some of the most outstanding human beings on the planet. One of them is a woman I'll call Jane Doe.  Jane is a warrior mother in the truest form, a leader in the advocacy community and a parent of a severely affected child. No matter what comes her way, she faces it with grace, dignity, and love. I am lucky to call her a friend.

I have wanted to write about Jane and her son, Billy (not his real name), for a long time. Autism truly is a spectrum, and the severity with which it affects some children is often too casually dismissed. Billy is one of those children who is profoundly affected, now a teenager. Over the years since I have gotten to know Jane, her plight to help him has always hit me hard. I asked her to share a recent traumatic episode with Age of Autism to put a name and face on the children and parents who are fighting this fight everyday. To those of you going through the same thing, this story is also for you. To those of you in a position of power to do something about it, I beg you to do so. This is the reality of Autism for far too many families. Here is the story in Jane's own words....

The Medical Story

Billy is fifteen-years old and nonverbal with a long history of GI disease, immune deficiency, and more recently headaches. When not in pain, he is sweet, engaging and affectionate. He has not been doing very well since the end of September, mostly battling headaches on top of the usual GI issues. For the two weeks prior to this recent hospitalization, the topic of this story, Billy was very edgy, noncompliant, self injurious, and at times aggressive. In the last week before, he became more self injurious and aggressive; I was talking to his DAN physician or the staff almost every day. 

Billy had a little congested cough (very unusual for him) in the two weeks prior, and when the cough ended, the aggression/self-injurious behavior increased. He kept biting/gnawing on his upper arms. He wanted me near him, but he wanted to dig his nails into me and scratch me almost constantly. At this point he would not wear clothes, and he would not get off the couch. 

Billy has epic constipation (he is suppository dependent), reflux and chronic headaches. I know the behaviors associated with all of those things, and I know how to handle them and relieve his pain. This time I knew he was in pain; I just could not figure out what it was. Then he stopped drinking his elemental formula and water. So by Friday I knew there was no avoiding ER, because he was dehydrating. 

We could not even get Billy to the car. He refused to dress and refused to leave the couch, let alone the house. I thought I'd never see anything more frightening than Billly's grand mal seizure in 2006, but this night was worse. The more I talked to him and explained to him that we had to get in the car and get help, the more upset and self injurious he became. He bit up his arms badly, and he gave himself two black eyes in the process. 

I had to call 911. It took five paramedics to get him on a gurney, in restraints, and in an ambulance to get to our local hospital. At this point I thought the poor kid had appendicitis or something. I'd never seen him so out of control. The hospital got IV fluids going and ruled out a  lot of things. CT scan finally showed that his small and large bowel were full of air, even though he did not look any more distended than usual. Soon after the CT scan, however, his belly grew very large and became very hard. 

The local hospital transported us to Children's Memorial in Chicago, which is where we were for five days. Billy was in loose restraints Friday through mid-day Monday. He was just too aggressive and self injurious because of the pain in his belly. Diagnosis was ileus (bowel shut down) due to virus (the cold in the last two weeks).

Since Billy was not vomiting and began passing the air in his belly on his own, the hospital doctors decided not to intervene other than to give IV fluids and a little Tylenol for the pain. So you sit and wait for that air to pass; even with medication on board, it's pretty damn painful. Thankfully, the distention went down, and he seemed more comfortable on Sunday, but then suddenly his belly blew up again and we had to start over. That was pretty disheartening. The doctors at the hospital said that while passing all that air, another pocket of virus can open up in the intestine and cause you to distend again. By mid-day Monday Billy had a soft belly, was much calmer and back to drinking water and elemental formula again. So they took him out of restraints, and on Tuesday they removed his IV.