If you read my last post, you know that fall break weekend was a rough one at our house. A week after her TDaP vaccine, Haylie had three seizures in two days, with long dysfunctional postictal periods that left her wiped out and cognitively impaired for most of the weekend. She headed into midterms feeling like a blank slate, which didn’t fare so well for her grades. But, she’s tough. She’s smart. She’s good at making connections, advocating for herself, and working hard to catch up. After all, her entire early life was a game of catch up, to grow faster neurologically than her peers so she would eventually have the same abilities and opportunities in life. She did that like a champ. And, she weathered this situation with the same resolve.
For me, it’s easy to see the connection between the vaccine and the seizure reaction. Haylie is at risk for seizures anyway, yes. But they were so different than her usual pattern. Much more intense. Does that mean I am advocating against vaccines? Not at all. But, I do think it’s prudent to weigh the risks and benefits carefully for every situation.
And, it’s easy to understand why so many people ask me why Haylie doesn’t take medications to control her seizures. This will take a little longer to explain, but here goes…
When Haylie was just a twelve-day old baby, she got terribly sick with a case of bacterial spinal meningitis. To stop the status epilepticus, a dangerously long period of seizing, the doctors used high doses of Phenobarbital. When she finally recovered and was sent home from the hospital a few weeks later, she left with a prescription for this strong barbiturate to prevent the seizures that she would always be, according to the doctors, at high risk for. Seizures, they told me, that could cause her further brain damage.
So, Haylie spent the first two years of her life downing a shot of Phenobarbital each morning and night, bathing her developing brain in its sedative effects. This was for her own good, they said.
But, at two years old, I noticed how much slower she was than her friends at daycare in trying to focus and speak. How she couldn’t walk and run the same way they could. How she got easily confused. How she held on with a death grip to my elbow as she tried to fall asleep (it wasn’t until many years later that she said to me one night, “Mom, the room doesn’t spin anymore.”). And, even though I became quite used to the smell of alcohol on her breath all the time, I couldn’t help but feel distressed at the large amount of drugs going into such a small girl.
I asked our pediatrician, the local seizure expert, about weaning her from the medications, expressing my concern about her dependence on these addictive substances from such a young age and their effects on her development. For months my concerns were waved away but, eventually, my persistence won out and the doctor agreed to do the wean. It was fast. Two weeks later, Haylie took no meds. The week after that, she had a huge “breakthrough” seizure, as they call them, and ended up hospitalized after a midnight ambulance ride. We left with a new prescription for an even larger dose of Phenobarbital.
Over the next two years, as Haylie grew, her seizures became more frequent, though it was difficult to know at the time just how many she was having. At that point, because she was on so many anticonvulsant medications that depress all the functions of the brain, her seizures were more mild and hard to identify. Some of them were “absence seizures” where she would just look away and seem to lose focus and concentration for a few moments. Others were more unusual – intense turning of her head and eyes in one direction with a bit of a twitch to it, unable to respond or break the spell. Sometimes she would just sit up and vomit at nap time or bed time (remember those beta to theta wave transitions?). We never knew for sure. Neither did the seizure expert pediatrician, whose office I burst into many a time with my eye rolling, head turning, tongue clicking toddler on my lap. She was hesitant to diagnose those episodes at all, to give them a name. I didn’t really care what they were called, I just wanted them to stop. I wanted my daughter back. So, the solution came in another bottle, another pill.
By the time Haylie was four years old, she was on four different anti-convulsant medications that we used in combination to try to control and limit the number of seizures she was having each week. This doesn’t count the handful of medications we had tried that she had had bad reactions to. The one that caused bright red spots to appear all over her torso. The one that gave her a fever. The one that made her too dizzy to walk and caused her words to slur. So, I settled for the lesser of the evils and gave her the ones that only made her lips and gums swell, caused excess hair to grow on her back and face, made her eyes cross. One she could drink, another that she was willing to chew up, and one that tasted so bitter we had to hide it in a heaping spoonful of ketchup to get it down, hoping the amount she spit back up wasn’t too much. I took her to the hospital regularly to check her blood levels and liver enzymes, to monitor the toxic effects of these potent pharmaceuticals and what they were doing to the other systems of her tiny body.
And what about what they were doing to her brain? We already knew that Haylie was brain injured, so it was hard to tell the difference between the symptoms of that and the complications caused by the chemical cocktail aimed, quite unsuccessfully, at eliminating her weekly seizures. That is, until she was successfully weaned from them.
Once we were on The Intensive Treatment Program at IAHP, and once Haylie was on a solid nutritional program to support her growth and development, the doctors there began a very slow, very careful detoxification of all her anticonvulsant medications. They knew just how powerful and destructive these drugs were to the overall wellbeing of a child’s growing brain and body. But they also knew just how dependent her brain and body had become on these pharmaceutical substances and how dangerous and counterproductive a quick wean can be. It took us more than two years of slow, steady elimination to remove all these drugs from Haylie’s system. And, as the process went on, she became more and more intellectually capable, more coordinated, more vibrant, less frustrated, irritable, and confused. She began to thrive and to shine in ways I hadn’t ever seen before. And, as the detoxification came to a conclusion, Haylie taking only part of a dose of the last medication two days out of a week, the effects became startlingly clear. She would be energetic, clear, and sharp all the time, except on the days I gave her that little yellow part of a tablet in the morning. On those days, she couldn’t focus, had crossed eyes, and felt sick to her stomach, with no appetite for all the healthy foods she usually loved.
So, I made a call to our supervising physician at IAHP and told her what I was noticing. She told me to flush the rest of those darn pills. Haylie was eight years old. She’s never had another drug since that day.
We celebrated with a big party, inviting all our friends and family over. We all shared a juice “toast” out of the little plastic cups I had used to measure her daily phenobarbital dose in. We cheered in unison, tossed down the shot of juice, and then tossed those damn cups in the trash.
A few years later, Haylie still thriving physiologically and making steady improvements on all other aspects of her neurological rehabilitation, including a drastic reduction in the number of seizures she had, she went to have an EEG as part of the updates required by insurance coverage for her condition. When the results of that sleep-deprived brain wave assessment came back as abnormal, the neurologist wanted to prescribe a new anticonvulsant medication for her that had just been approved for use in children. I explained to her the treatment method we were following and how it was working so well for Haylie. I explained Haylie’s history, how far she had come, and that we intended to stay on this path, drug free. That neurologist called me criminal. She told me that I was being a delinquent mother by not treating my child with the protocol so strongly recommended by the mainstream establishment. I thanked her for her advice and took my daughter, whose liver enzymes were no longer in the danger zone, home with me. After all, we had a lot of creeping, and crawling, and brachiating, and oxygen enrichment still to accomplish that day.
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.