My Daughter’s Story

Chris Aikman
23
3231

Like every parent of a newborn child, I thought my infant daughter was the most beautiful. And like every parent of a newborn, I was right. But I do remember, when she was a month or two old and out in her snuggly infant carrier, a woman came up to see her and exclaimed, “She has the most beautiful eyes I’ve ever seen.” I often thought of that incident in the years that followed, when the beauty of all that happened was harder to remember.

My daughter was born in 1977; she would be 40 years old if she were still alive today. Instead, she spent 32 and 1/2 of her 33 years on a continuous cocktail of powerful psychotropic medications that were intended to control her intractable seizures, and in the end she was killed by them.

Recently, a friend whose grandchild had just been diagnosed with seizures asked me to write down what I learned about epileptic medications from my daughter’s experience. I have done so because of her request, and because of the hope that others may learn from the mistakes that I made. Basically, I am now haunted by guilt that my daughter never really had a chance for anything like a normal life, because of the choices that were made for her. Choices made with the ‘best’ medical advice of the day, which I had never quite accepted as correct, but in the end largely complied with for lack of any clear alternative. The ensuing years have revealed some of the devastating long-term effects of those medications. This will not be an encouraging report, because today I wish we had avoided most of them.

You can find out more in what follows below by checking out the bolded terms on Wikipedia.

My daughter was exposed to benzodiazepines in utero, and also for the five and a half months that she was nursed. Her mother had been placed on diazepam at age 12, in the 1960s rush to exploit these new ‘miracle drugs’ to combat trauma. Her mother’s medication was all prescribed under the direction of some ‘leading’ doctors of her day. Though she tried many times to live without these medications, she was unable to stay off them, and took rather heavy doses at times, even when pregnant in her mid-twenties. It is very likely that my daughter was born drug-dependent and remained so in those early months of her life. It is almost certain that she would have felt the stress that caused those drugs to be taken in the first place. During those early months of her life, she sometimes appeared to have small, startling muscle spasms. I suspect that what followed may have been due, at least in part, to drug withdrawal from diazepam.

At the age of almost six months, just after being weaned, she had her first major seizure, which was quite terrifying. Doctors immediately put her on phenobarbital, a barbiturate she took from age six months, and which would continue to age 16. This medication did not stop the seizures, which became more frequent. Around eight months of age, her infantile spasms were diagnosed as West Syndrome. This was treated with prednisone and ACTH for a couple of months, plus nitrazepam, a benzodiazepine she took from nine months to age 25. For a matter of weeks she was seizure-free, but the seizures returned and intensified. Around age three, I tried briefly to taper off the nitrazepam, but in the end had to return to full dose levels. Around this time valproic acid (sodium valproate) was added to her regimen, which she continued taking for the rest of her life. So for a majority of her life, she was taking these three main drugs: phenobarbital, nitrazepam and valproate. All this time her seizures were intractable, with major seizures occurring more often than one a month, up to several per week. These seizures usually occurred in bed, during morning twilight periods, but occasionally also in the daytime.

Her development stalled around age three; at times her speech reached five-word sentences, but more usually consisted of single words or two-word phases. She could, however, sing several lines of a number of songs. The drowsing effect of her medications were a greater problem in her life than her seizures, which occurred but rarely in her awakened state. But at age seven, something else began which proved far more problematic than either her mental handicap, her drowsiness, or her seizures. It was at that age she had her first rage attack. Her mood would change in an instant from a smiling, happy girl to one of astonishing violence, with objects being thrown and profanities screamed. These attacks typically lasted 2-5 minutes, then subsided. It was never exactly clear whether she remembered these attacks afterwards, but sometimes she would later be remorseful. These paroxysms made her life, and the life of all who tried to care for her, a kind of living hell. I’m sure we went through more than a hundred caregivers over the years. Were these outbursts a paradoxical effect of her heavy medication? I am convinced they were.

At age 16, her new physician said that phenobarbital should never be given to children. We slowly tapered her phenobarbital over most of a year, and the frequency of her seizures actually decreased dramatically at that time. You can search online and find a number of famous people who used phenobarbital as adults, who ended by taking their own lives. Phenobarbital is most certainly not the de-stressor that doctors once believed it to be.

However, her violent rage attacks continued: she was usually happy, but her mood could change in a instant. At age 19, she went to live in a wonderful group home, but these rage attacks were more than the compassionate staff and other residents could handle, and she had to move to private one-on-one care. At age 25 we slowly tapered her off nitrazepam, over a period of about a year. It might have been more successful had we done so over several years. Her seizures did not increase, and all went well until we stopped this drug altogether. Then, for the rest of her life, she suffered greatly from akathisia.

Valproate never had any significant benefit for her, nor significant side effects, as far as I could discern. However, its harmful side effects today are recognized, and are of concern for many people. Doctors always maintained that it was helpful as a ‘mood-stabilizer’. No such benefits were ever apparent to the rest of us.

After age 25, she went through a whole sequence of drugs, hoping to address her ceaseless akathisia: methylphenidate (Ritalin), lamotrigine and buspirone are the ones I remember, but there were many more. Nothing seemed to really help. Lamotrigine was a nightmare: her whole body became covered with skin rash.

She was taking gabapentin (Neurontin) at the time she stopped breathing in her sleep. It turns out this is a rather common experience (see also: “Government plans to classify gabapentinoids as class C drugs“).

I don’t remember hearing the acronym SUDEP before we lost her. Sudden Death in Epilepsy, SUDEP, has become a relatively recent topic. All of which is to say, the ‘cure’ is more dangerous than the ‘disease’, although strictly speaking epilepsy is a condition, not a disease.

In summary, all of these medications were bad. Having said that, benzodiazepines are amazingly effective for stopping seizures in the short term. They have no net benefit in the long term. Their lack of long-term benefit was known at least by 1980. But doctors insisted on prescribing their long-term use, even as their severe withdrawal effects were widely becoming recognized in the UK and Europe. In North America, doctors never let on that there was an extreme dependency problem with benzodiazepines until decades later.

What do I think can be learned from her story? Doctors tend to the viewpoint that children’s seizures represent a lifetime condition, requiring lifetime medication. That, I feel very strongly, is exactly the wrong viewpoint, especially for young children. Many children’s seizures can be a short-term condition; some even outgrow the intractable infantile spasms that characterize West Syndrome. I would propose that it is more productive to view seizures as something the child may and can outgrow. By imposing these horrendous medications indefinitely, a favorable outcome is precluded.

My daughter was a pioneer, or guinea pig if you like, in testing the long-term effects of some of these drugs from the earliest age. Since then we have learned something from the experiences of others. On the positive side, the occurrence of infantile spasms can often be arrested by administering pyridoxal phosphate, the active form of vitamin B6. There are even more encouraging stories about success in treating childhood epilepsies with medical cannabis. It seems to be effective without the destructive withdrawal symptoms of the other anticonvulsants. On the negative side, we now have hard numbers that show long-term benzodiazepine use is associated with increased mortality.

As a parent and scientist, but one who is neither a physician nor a pharmacologist, I have come in my own mind to see things this way: All psychoactive drugs to me represent a “borrowed happiness.” They may offer some short-term benefit, but it usually has to be paid back when you try to break the dependence. If you don’t pay back the happiness debt, things don’t get any better either. There may be nothing wrong with borrowing happiness if circumstance allows you to gradually pay it back. If you can never pay it back, a lot of suffering ensues.

Did her drugs cause the violent mood swings, now known as Intermittent Explosive Disorder, that marked her adolescent and adult life? I’m sure they did, although this might not always happen with others using the same drugs. I know of at least a few cases where the results of the same medicines were even more dramatic and tragic. If I may use what will seem to professionals to be a crude analogy, consider what happens with the most-frequently used drug, alcohol. People react to it differently, depending on their inner selves: some become quiet, some become happy, some become violent, some involve all three.

Forty years after her epilepsy started, I have come to believe I could have given my daughter a real chance to heal. I should have taken medical leave from my work, and concentrated all my effort on securing a safe, calm home life for her, 24/7. No child can prosper without an atmosphere where he or she can feel constantly safe, bonded and surrounded by love. Hospitals, wonderful as they may be, are not exactly that kind of environment. Had I followed that path, I might have been successful at gradually tapering her off her medications. As it was, I became a single parent, and she went through dozens and dozens of caregivers, none of whom could cope with her seizures, and later, her rages. With the insecurity of care she experienced, plus the damage of continued medication, she never really had a chance.

I have a beautiful grand niece of kindergarten age, now recovering from seizures and from medication. Her prognosis looks very good.

To close on a positive note, I believe there many good reasons for hope. But it won’t be found in medication alone.

I loved my daughter very deeply, and an incredible amount of care was given to her by a host of caregivers, with the best of intentions. It saddens me deeply that we ever believed that medications alone would provide a ‘cure’. There are some promising therapies out there, yet I doubt that any medication alone can suffice to resolve intractable childhood epilepsies. The real cure must lie elsewhere. The foundation of that must lie in providing the warmth and security that all children require and deserve.

Postscript: I suggest checking out these hashtags on Twitter:

#epilepsy #lamotrigine #gabapentin #sudep

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23 COMMENTS

  1. Your story leaves me speechless. I believe it could help so many people if they get the chance to read it. I can relate to being haunted by guilt by decisions made. In retrospect, the right thing to do often seemed so much different to me than what it seemed at the time.

  2. I think this is a very good analysis of the medications from the perspective of a scientist and first hand observation of his own daughter. A medical degree or a pharmacology degree does not always guarantee an ability to link drugs to their side effects. Some doctors are not very good scientists. I’ve seen countless doctors overlook adverse drug events that were pretty obvious. I think it’s quite possible his daughters seizures were induced by the benzodiazepines taken by her mother while pregnant and that his daughter had a dependence on the drugs from the outset. Any effort to get off them resulted in increased synaptic firing and ultimately seizure activity. The knee jerk response by doctors is more drugs. If we could go back in time, I think a different outcome could have been possible. Although the dangers of benzodiazepines is more apparent now, these drugs don’t get the attention that opioids do. I believe they are more dangerous and addictive than opioids. I think the father is spot on in his analysis.

    • Icagee, this story truly is tragic. But what I don’t understand, and I’ve experienced this first hand, that if we are undereducated, non-professional, ‘no bodies’ we are rarely ever listened to concerning the mental torture we experience while taking our cocktail of psychiatric drugs. If I, with a 10th grade education can research psychiatric drugs only to discover exactly how dangerous & deadly they are then why can’t Doctor’s, Psychiatrists, Pediatricians, ect? And yes, I did uncover that Klonopin, used to treat seizures can cause Status Epilepticus Seizures during withdrawals. It’s why I suffered them when I’m not even epileptic. But, do you think anyone in the Medical field could tell me this? No. When is enough suffering – enough? This poor man who mistakenly believed his doctors, as I did too, sadly and tragically, with devastating results.

  3. I am so terribly sorry about what happened to your daughter, and to you. It seems to me that the old treatment of using leeches to draw out poisons was actually quite humane by comparison. Simply awful, and all because of our pervasive fear of emotional pain. Any poison, apparently, is okay so long as it maintains the illusion that pain and death can be eradicated. My greatest sympathies, and appreciation for writing this.

  4. I’ve seen expectant mothers on neuroleptics (and possibly other drugs). People need to know, taking drugs while you are pregnant is something you need to think about, and more than twice. You are not the only person taking the drug when you’ve got a fetus, the fetus is being drugged, too. It’s one thing to talk about ‘trade offs’, say, some sort of long term stability for periodic frenzy, but when you’re with child, the child shouldn’t be dosed. The problem here is though less with the patient than with the doctors, and often the family, of the patient. People can, and should, go without some of these substances when they are able to do so. Anti-depressants are also dangerous to unborn infants, and think how many parents must be treating the issue as if it was of no consequence. Psychiatric drugs are not good prenatal care, and represent one of those things expectant mothers should very seriously consider, for the sake of their child, doing without.

    • We know this now. However, 20 years ago, when I was pregnant, I was assured by the medical profession that this was a safe option. I have tremendous guilt over this and daily wonder if my child is suffering because of that use. Risks of anti-depressant use then were not talked about and still aren’t. As a society, we have been had by the drug industry who cares only about it’s profit and stakeholders.
      Parents treat the issue as if it weren’t a problem because they are told it isn’t and they trust medical professionals in an old school way. The trust in medicine has ended for me. I take nothing they say at face value and I hope that my son is able to prove my concerns wrong.

    • I attended a meeting a year ago where a psychiatrist who is supposedly the expert on use of neuroleptics during pregnancy stated that all of these drugs used by psychiatry are perfectly safe for pregnant mothers to take. He is employed by a university medical center so he teaches this to the new doctors and med students. He hinted that, even if there might be bad effects that these effects are better than letting the mother live in the delusions of schizophrenia, the schizophrenia would be worse than the drugs’ effects. I couldn’t believe I’d heard him say this. I walked out of the meeting.

  5. There are two movies about two different children that had constant seizures and the cures their families found. One is “Lorenzo’s Oil” and the other is “First do no harm” http://www.charliefoundation.org details ketogenic therapies and originates from the boy in the second movie.
    There is a young girl whose family moved from Texas to Colorado so they could give her a drop of CBD oil morning and evening. Apparently she has been seizure free since she started using CBD oil (Marijuana derivative) I read that she is also part of a group suing U.S. Attorney General Jeff Sessions in an effort to legalize Marijuana.
    Today from mercola.com is the article “Big Pharma Tries to Monopolize CBD Oil Market”.

    • I loved “Lorenzo’s Oil.” In his case he became totally paralyzed as his nerves deteriorated. Bitter sweet ending. His dad (played in the movie by Nick Nolte) wasn’t a doctor or scientist. But his love for his son motivated him to find a solution for Lorenzo’s problem. And he saved many other children.

  6. My heart aches for you and your family. That the medical profession caused this and continues to cause it is simply criminal. Yet, the marriage between the health maintenance industry and legal drug dealers makes so much money that it will go on and on until the profits end. We see glimmers of hope here and there, but the power of the corrupt is far stronger, at this time, than our ability to end it.
    I too feel guild about trusting these people with my precious children. Please find peace in how much you did to try and make the best life for her. They exploited your fear and your pain. Shame on them!

  7. Yes, a million times yes to what you have said here. My own son was exposed to Ambien in utero while i was on bed rest. After his birth we went home from the hospital and cold turkeyed. I know this was the cause of so many of his problems then and since. I advocate for benzo victims everywhere, but the stories that hurt the most are the children. Far too many have been permanently altered in their demeanor, cognition, etc. It’s heart breaking especially considering there are so many safer alternatives that can and should be implemented before or in conjunction with these medications. Benzos are for emergency use, not daily use. If the medical profession could just get that through their heads this world would be better for it. Bless you and your family. Thanks for sharing your story.

  8. It’s my impression that the use of benzodiazepines in epilepsy is increasing. Often they’re actually prescribed not for controlling seizures but for anxiety, which many people with epilepsy experience. Whenever I encounter someone with epilepsy asking about these drugs I warn them of the dangers, but these drugs have a strong allure.

    I also appreciate your comments about epilepsy “for life”. Many neurologists have a poor knowledge of the natural history of epilepsy, which does indeed spontaneously remit in many cases, and tell their patients that they’ll need to take medication for the rest of their lives. This is unfair and inaccurate. Each patient should be assessed individually rather than subject to a blanket conservative approach. Moreover, even people with active epilepsy should be allowed to decline or discontinue medication if that’s their preference.

  9. This man’s story should be posted to the NAMI website, so people could see what a CARING father thinks of #killerquacks . I am so, so sorry for your loss, man. Thank God your daughter had you in her life. Because of you, your daughter’s life wasn’t a total hell.

  10. Dear Chris,
    Please accept my condolences on the death of your daughter. Losing a child is just the worst, for whatever reason, but to lose one in this way just compounds the grief, in my experience – having lost my only son to profound hyperglycemia from Zyprexa ( a side effect hidden by the company – Eli Lilly – for the sake of profit).
    Though these executives were never tried in a court of law, perhaps they will carry the burden of guilt in their hearts – if they have hearts, that is – forever.

  11. My heart breaks for your story and for all you have gone through. I was just reading about benzodiazepines and know from personal experience how very potent they are. I can’t believe that doctors remain extremely ignorant and STILL CONTINUE prescribing them past two weeks. Imagine, this has been going on for over 50 years after Valium came out. These terrible drugs need to come out of the woodwork as one of the worst pills taken past two weeks due to the dependency issue. I’m so sorry that your wife became dependent and couldn’t get off. It seems that that’s what started the domino effect of your child’s life. It is very sad.