Friday, August 29, 2008

Believe in him with me....

It's Friday night and my son has just finished crying himself to sleep. I am still trying not to cry. Those of you who know KC's sleep habits know that he rarely cries himself to sleep, but things are different now. KC cries a lot. He screams when I drop him off at daycare. He cries when he wakes up in the morning. He cries himself to sleep, and he cries if I insist that he eat his yogurt somewhere other than the couch. He cries if I won't let him have more than three macaroni and cheese microwave dinners, because I am truly afraid that he is going to make himself sick by eating so much. And I cry because over the past month or so KC has changed in some significant ways that have led me (and others) to believe that KC is regressing into autism. Asberger's Syndrome, to be exact. I have always known that this was possible, even likely. Kids with seizures, especially IS have a much higher instance of autism than others. KC has been seizing almost daily lately. Kids with autism tend to have seizures more often so it kinda works both ways. KC has always had a few autistic tendencies, but in and of themselves they were not enough for a diagnosis, or even more than taking note. I always knew that there was something slightly different about him, but that could be said about many people. I also knew that if this was going to happen, it would likely happen near his 2nd birthday, if it hadn't already. I was just so hopeful that with all of KC's good luck that he would be ok. I wanted so badly for him to just be ok. And he will be ok, just not the way I had hoped. He has a lot going for him. He is verbal, social, and can make emotional connections. He will never be severely autistic, but to say that it will be mild might be over simplifying things. Many argue that there is no such thing as mild autism. But there is high functioning autism, specifically asberger's which is what I believe KC has. KC is extremely intelligent. He can count to 5, he knows the letter E, he knows a circle when he sees one, he can recite a few of his favorite books my memory, he remembers the tune to songs and can sing the tune. But he can't eat with a fork. He has days that he can barely walk with out falling. Lately he can't seem to stop tilting his head, and walking on his tippy toes. He is terrified of crib toys that move. He is my sweet, perfect, beautiful angle baby and right now I have that terrified feeling of wanting to scoop him into my arms and run far away from this. Of course I cannot do that, so I will once again gather the pieces of myself and do what I have to do to save my baby. I have begun researching the cassien free gluten free diet that seems to work wonders on some autistic kids. If all goes as planned, I'll start transitioning him right away. I'm going to research some things I can do at home regarding his behavior, and if need be I'll get early intervention in again. I don't even have to have him go through the official diagnosis process since he qualifies for services based on the IS. Of course he will have to eventually go through the official process, but it doesn't have to happen this second. I may take him in for an EEG, just because he seems to be seizing more and more. I'm going to research DAN doctors (defeat autism now) and see what I need to do to learn about chelation therapy and ABA therapy. And I'm going to try to keep myself together even though I feel like my world is falling apart again. Please pray for my baby. He's such a good boy, so sweet and so loving. I believe in my heart that his spirit will break through anything that he comes up against...I really do believe that. Believe in him with me, and believe that once again KC will defy the odds and will rise above whatever comes his way.

Tuesday, August 26, 2008

Just thought you might like to know...

After a few emails back and forth, this is part of my response to someone whom I love dearly who likes to play "devil's advocate" with me on the vaccine issue. Some of you might be suprised at my feelings on this subject, but this is truly how I feel.

... Not for the point of arguing, but so you can understand why I cannot stop defending my position on this. This is not just "some cause" for me. This is about my child. IF KC never had IS, I can guarantee you that I would not have the views or knowledge that I do about vaccines. I wish I didn't have to argue this. I wish I was blissfully ignorant like most parents, but I don't have that option. I watched my son go through hell, and then learned that way to many other families have had the same experience, and I just cannot go backwards now. Unfortunately, most people who fight for this particular cause have experienced the horror of vaccinating their child, and watching them change. Weather it be seizing like KC, regressing into autism, or becoming permanently disabled, It's not like we pick and choose a cause or two out of a hat and say, well I think I'll fight for this. It's not like that. At least not with this. If that was the case I would take my choice and put it back in the hat and forget I ever heard the words "vaccine safety." But I can't do that, so I do what I can to share what I know with the people who want to hear it. But please don't ever think I chose this over what some might view as a more important cause. I'm just a mom who held down her screaming six month old baby so he could be given routine vaccines, and ended up with a living, breathing, nightmare. This is the only way I can find it in myself to live with what happened. I mean it when I say this...please forgive me for being less than kind in my response to you. My intention is never to offend, irritate, or hurt you. I am simply trying to deal with my own pain and move on in the only way I know how.


Wednesday, August 20, 2008

Heartbreak and Hope

Please take a few moments out of your day and watch this video. It was made by Angela Utely. For those of you who are already educating before you vaccinate, this will just reaffirm all of your dedication and hard work. For those of you who are scared not to look. I'm not saying don't vaccinate. Vaccinate, but EDUCATE before you do! The faces of children on this video are just a handful of the thousands who were at the green our vaccines rally. The second song in this video is the song that was playing as we all held up pictures of our vaccine injured children in Washington. I sobbed my heart out, and every seizure, every hospital visit, every time I had to hold KC down for tests as he screamed, every second of the months and months that I had to wonder if he would make it, and what his quality of life would be, flashed before my eyes in those few moments. This didn't have to happen to KC. If you think that what I went through was frightening, and don't want to see anyone else go through it, then watch.
And check out Angela's site which is listed below(www. myspace. com/preventvaccineinjury) It is nothing short of amazing. Educate yourself. Listen to your heart, always.

Love Karen

Sunday, August 10, 2008

A story that is close to my heart

I got this off of my friend, and fellow IS Mama's website, (thanks Danielle: ) and I hope everyone I know reads it. It is an amazing account of what it's like to have a child with IS. I remember all too well experiencing some of the same heartache and pain that this mother did.

Love and Instinct

By Paula Michaels,

This is a scary story, a cautionary tale.

It’s the kind of story that, a year ago, I would have turned away from because, after all, what did a story about a sick baby have to do with me?

When Zach was born, he was perfect. His Apgars were 9.9. He was 7 pounds, 4 ounces and 21 inches long. He had fine blond hair and those murky blue infant eyes that look like the bottom of the ocean. He breastfed easily, and he grew. He did all the things he was supposed to do, at all the right times. He smiled at 7 weeks. Rolled over at 12.

When we visited Zach’s pediatrician for his once-a-month well-baby visit, her favorite word, when asked any question, was normal. She’d say it in a singsong voice. It became a joke between my husband and me. Normal, normal, normal, David and I would sing as we left her office.

I can pinpoint the day we stopped singing normal so happily: It was a weekend afternoon in early fall. We were sitting at the kitchen table, interviewing a babysitter, and I had Zach, then 6 months old, in my arms. Suddenly he flung his arms up, and his eyes rolled back slightly. It looked like something I had read about in the baby books, the “Moro reflex” common in many infants, except that he repeated the gesture a half-dozen times. Something rumbled in my gut. I called the pediatrician the next day.

“He did something strange,” I said, describing the incident.

Normal, she said. Absolutely normal. She sounded rushed. But when I got off the phone, I felt relieved. That was exactly what I’d wanted to hear. She was a top-notch pediatrician, a graduate of one of the best medical schools in the country. She was affiliated with one of the top hospitals in our city and had a burgeoning practice. If she wasn’t worried about what I had described to her, why should I be?

But the little gestures continued. Not every few hours, not even every day, but once in a while. The jerk of the arms upward. The slight roll of the eyes. And although I didn’t notice it at the time, Zach was slowing down a bit. He had stopped rolling over as much, and he seemed nowhere near ready to sit up by himself. But these are not the kinds of things that necessarily worry you as a parent. They happen slowly, incrementally. You think, My baby is tired. He’s mastered that skill, so he’s not doing it anymore. He’s a chubby baby – maybe that’s why he isn’t sitting up.

A week went by. I had a sick feeling whenever I thought about the expression on Zach’s face when these incidents would happen. I called the doctor again. This time, when she called me back and heard that I was again reporting the same thing, her voice developed an edge, so slight that I thought I might be imagining it.

“I’m really not worried about this,” she said. “Look. If he’s still doing it when he’s eight months, we’ll check into it.”

The incidents became more frequent. Every day now. In the morning, on the changing table, he would fling his arms up 10, 20 times. David and I talked about it often. We tried to figure it out. Maybe it was a delayed Moro reflex. It seemed to happen when he was tired. Babies have immature nervous systems, we’d say. We comforted ourselves and attempted to think of answers.

And then one morning, on the changing table, it happened more intensely than ever before, and I shouted to David to grab the video camera. He ran and got it and began to film Zach as his arms raised themselves in a jerky motion and his eyes fluttered backward. I called the doctor, my heart pounding. I made up an excuse because I believed she wouldn’t make time to see us for this thing I had already called her about twice in the past two weeks, something that she – without examining our baby or asking a single question – had already dismissed. I said that I wanted to bring Zach in because he was running a fever and had a cough. She couldn’t very well say no to that.

We walked into the doctor’s office armed with our camcorder. She was young, with a frenzied manner; each time we had seen her since Zach’s birth, she had walked into the office and quickly glanced down at the open chart to see who we were and what our baby’s name was. There was no sense of memory or connection. I had noticed this but had attributed it to managed care and a busy practice.

“What’s this?” she asked, eyeing the camcorder and our baby.

“We’ve videotaped those gestures,” I said, my voice shaking. I wasn’t even sure whether she remembered what I was talking about. “I want you to see it for yourself.”

David turned on the camera, and he and the doctor squinted at the digital film of our baby on the small screen attached.

“That’s what you mean?” she asked, pointing. “I really think that’s nothing.”

Something in me snapped. Now I should say here that I am not a particularly forceful person. I tend to apologize for being in the way if someone pushes past me on the street. I am shy and soft-spoken. I blush easily and have been known to stammer. But at that moment, I stood up in the doctor’s office and said, “I’m not leaving here until you call a neurologist. I want Zach to be seen by a neurologist. Today.”

To this day I don’t know what possessed me. I suppose it was a kind of mother’s instinct. I’m not sure I had ever believed in it before, that old adage that mothers simply know.

“I’ll see what I can do,” she said with a sigh. I suppose it was the videotape that did it. In this age of malpractice paranoia, she couldn’t afford to take the chance that something was in fact wrong, because now we were armed with proof. So David and I waited in her office for a half hour. The whole time, he held me and I wept. It was as if I already knew that something awful was happening.

We were given an appointment with a pediatric neurologist for that afternoon. There’s nothing like a hysterical mother in a pediatrician’s waiting room to make things happen. She wanted to get rid of me – and fast. We had a few hours to kill, so we walked to Gymboree and bought Zach some onesies, socks, and a fleece outfit for the winter. A week before, I had been a normal mother of a normal child who would shop for infant clothes or take my baby to the playground with the sense that all was right with the world. But now I found myself in a fog. Socks seemed poignant. The onesies made me want to cry. I started bargaining with God. Please, let it be nothing. Let there be some logical explanation, I silently pleaded.

The moment I saw the pediatric neurologist – a man in his 50s with salt-and-pepper hair and thick glasses – poke his head around the corner and motion us into his office, I knew we were in good hands. “Let’s take a look at him,” he said, laying Zach down on the examining table. And whenever in my life, whatever moment in the future I wonder whether there’s a God, I will think back to this: Zach, who had been having these episodes once or twice a day, had an episode right there on the neurologist’s table. I watched the doctor’s kind face, his eyes, and whatever glimmer of hope I’d held on to that this would be nothing faded away.

“We’re going to do an EEG this evening,” he said, calling in his nurse, arranging for a technician to come into the office after-hours.

There is a transparent veil that separates the healthy from the sick, the good life from the one that goes suddenly and terribly wrong. In any given second, that veil can open up and swallow you. Of course, most of us never think about this, because if we did, we wouldn’t get out of bed. My little family and I went through that veil, like Alice through the looking glass, on that brisk fall evening.

After Zach was taken in for his EEG, a long time went by before the doctor called us back into his office. He wasn’t smiling. He pulled his chair around to the front of his desk so that he was sitting near us.

“Well, we’ve got our answer. And it isn’t the one we’d hoped for,” he said. And then he gave us the diagnosis: infantile spasms (I.S.). Something we’d never heard of, a rare seizure disorder that affects about seven out of a million babies. The statistics were impossible to comprehend. When you find yourself on the wrong side of a statistic like that, the whole world does a spin around the moon. Gravity shifts.

“What does this mean?” asked David. I was holding Zach. His hair was greasy from the goo they use to conduct the electricity for the EEG. He was sleeping, and he looked peaceful.

“We don’t know,” answered the doctor. “We know very little about this condition.”

“What’s the worst-case scenario?” asked David.

“Brain damage,” said the doctor.

David’s face seemed to disintegrate, caving in with terror and grief.

The doctor immediately turned to treatment options. There were basically two: His first choice was Vigabatrin, a drug that had not been approved by the FDA, even though it showed quite a bit of success in stopping the seizures. The doctor recommended Vigabatrin as the first line of attack because the only other option, a steroid given by injection three times a day, was a far worse choice. He described it to us as sheer hell for the parents.

Before we even knew what was happening, his nurse was on the phone to a pharmacy in Canada, which would send us the drug by Federal Express within a couple of days. In the meantime, the nurse had also called another family in our city who had a child on Vigabatrin. The parents agreed to lend us some, and we said we’d drive by to pick it up in an hour. We pulled up to their building, one I had passed a hundred times before, and David took the elevator up to their floor, where a woman met him at the door with an envelope containing a week’s worth of the drug.

That night, Zach started taking the Vigabatrin, which was a powder we sprinkled on his food. Within two days, his seizures were almost entirely gone. Within a week, they had ceased completely.

We went online and tried to find out everything we could about infantile spasms. There have been few studies on I.S., none in this country. The most comprehensive studies were in Finland and Norway. The information was bleak.

Nearly all babies with I.S. are diagnosed between 6 months and a year. The condition itself is finite – it goes away as suddenly as it came, provided that there’s no underlying cause. But the seizures themselves cause grave problems presumably because the resulting electrical activity damages the developing infant brain. The stories I read on the web were of babies who weren’t walking or talking by age 2. Who were blind or deaf. Almost all were mentally impaired. Ninety percent of infants with I.S. suffer some sort of developmental damage, ranging from mild retardation to a complete physical breakdown.

Every night I sat at the computer, willing the Internet to give me different, more hopeful information. I could not find one single story of a complete recovery. The most I could find out was that early diagnosis – along with a quick response to the medication – is the best indicator of recovery. The sooner the disorder is caught, the more likely the seizures will not have accrued to the point where they’re injuring the brain.

A few days into this, it occurred to me that Zach’s pediatrician had never called. No phone call to see how he was doing. No phone call of commiseration, just simply to say that she was thinking of us. This was a doctor who had examined him on the day he was born and who had seen him probably ten times since then. And she just simply vanished. I suppose she was afraid we might be angry with her. I suppose she was afraid we would sue.

As I write this, it’s six months later, Zach has just turned 1, and I am a believer in miracles. Zach has been seizure-free since going on the Vigabatrin. He is crawling, pulling up, cruising, and saying “Dada” and “Mama”; he’s a smiling, perfect handful of a baby boy. He is still on the medicine, which we give him five times a day, but he will be weaned off it slowly, starting soon.
His neurologist has called this a “save.” He believes that Zach is going to be one of the rare lucky ones. All underlying causes have been ruled out. Zach has had an MRI and a huge amount of blood work done. There is simply nothing wrong with him. We will never know why he got infantile spasms. There are theories ranging from the DPT vaccination to pesticides to something congenital. The truth is, nobody knows.

There are a lot of factors that have to do with Zach’s recovery – and even as I think “recovery,” I catch my breath. It will probably be years before I am truly able to rejoin the world of “normal mothers.” Will I ever sit on a park bench next to other mothers, watching our children play in the sandbox, and feel that I am one of them? I don’t know. I certainly hope so. But there will probably always be a part of me that will shiver over Zach.

He was responsive to the medicine, which was a piece of luck. And apparently we caught it early. But when I think of those two weeks when I was calling his pediatrician and listening to her dismiss my concerns – clearly she thought I was a hysterical mother, that all mothers are hysterical mothers – I am filled with rage. On the one hand, this is a rare condition, and it’s understandable that she would have deemed it unlikely that a baby in her practice would have I.S. After all, the odds are about seven in a million.

But on the other hand, Zach’s symptoms – slightly slowed development, the seizures themselves at precisely the right age for the onset – should never have been dismissed. And she dismissed them. With a wave of the hand, she nearly relegated my son to a life of pain and profound difficulty. If I saw her on the street, I don’t know what I would do.

So I am doing what I can by telling my story. Trust your instincts. If you believe something is wrong with your child, get it checked out. Don’t be polite. Make a fuss. Do whatever you need to do to be heard. Doctors do not like to make referrals. It isn’t good for their standing with their HMOs. I can only put it this plainly: If I had listened to my doctor, if I had waited until Zach was 8 months old before looking deeper into his condition, he most likely would be braindamaged. This beautiful, curious, intelligent little boy would have had his life forever compromised.

I was raised to be a good girl, to be polite and accommodating, especially to authority figures like doctors. But of all the things I have ever done in my life, the thing of which I am most proud is standing in the middle of that doctor’s waiting room with tears streaming down my face, demanding that my baby be seen by a specialist. I may have looked like a lunatic. I may have appeared to be hysterical.

But on that day, I saved my baby’s life.

Paula Michaels is a pseudonym. The writer is a novelist and an essayist.

Saturday, August 9, 2008

Sometimes I really get weary inside, fighting this war that I have waged against...well, everyone, or so it seems like sometimes. I have knowledge of things that sometimes I wish I could forget. I have information that I want to scream outloud to everyone, and I try, but sometimes it feels like my voice gets caught up in a big gust of wind, and I go unheard. Jenny said it best: "I have figured out what happened. I have answers, and I am running around pounding on doors yelling that I have figured it out, but no one is listening because they don't believe me." But Jenny is still fighting, and so am I. And it's worth it. Each and every parent that takes another look at vaccine info after reading my blog, makes it worth it. If you are someone who is still in doubt about what I am saying, I have a simple challenge for you. Google the word Simpsonwood. That's not a tough request. It's one word. A mere eleven strokes of your keyboard. After that, visit the link that I have posted at the top of this page. No matter what you do, please look at this page. It's inspiring, to say the least. Moving, heartfelt, and educational.